Patient Support

I've been single for most of my adult life and have even developed a bit of a writing platform regarding the single life with a book (How to Date in a Post-Dating World), an anthology of essays (Single State of the Union) and a humor column (Single Shot), published by the now-defunct Seattle P-I.

For me, singledom is a natural state. Instead of being cloistered away as one half of a couple, I have a huge circle of friends -- people I've worked with, people I've gone to school with, fellow writers, gal pals, neighborhood buddies, drinking buddies, old boyfriends, sources that turned into friends, the list goes on and on. I also have four sisters, all of whom I'm close with. I had so many people I needed to tell about the breast cancer, in fact, I eventually started an email newsletter (the Cancertown Gazette). And then a blog (www.doublewhammied.com).

My sisters probably did most of the heavy lifting when it came to day-to-day support during my breast cancer treatment. They were there for me before and after surgery, even helping me with drain duty (and an apartment makeover). They also went to some of the early doctors' appointments (when things were still very dark and raw and scary), talked with me daily via phone, sat through a couple of sessions of chemo (and chemo recovery) with me and prepared a ton of meals for my freezer. My friends were equally supportive, doing everything from bringing me food (pie! lasagna! homemade soup!) to giving me lifts to radiation to sending flowers and other gifts to taking me on weekend getaways. Friends and family both chipped in financially to help me pay for a wig made from my own hair (and those are not cheap). They also stayed in contact with me regularly, took me for walks when the chemo knocked the legs out from under me, and in general, made me feel loved and appreciated and cared for at all times.

In addition to friends and family, I got a lot of support and info from other breast cancer survivors, including one woman (a friend of a friend) who gave me her prostheses (she'd only used them for about two weeks before she went through reconstruction) and my first pocketed bra. The breast cancer community on Twitter was another great place to connect with men and women going through the same (or similar) experiences. As a single person (and a journalist), I'm used to reaching out to others and the people on Twitter have been incredible. Ditto for my Facebook friends (although I didn't officially "come out" on Facebook until I was almost through with treatment).

To be honest, I don't think I would have received as much support and love and help if I were married. That's a tremendous burden for one person to shoulder which is why so many marriages buckle and break under the pressure of a cancer diagnosis. If anything, I feel like I grew closer to my friends and family (and even some heretofore casual acquaintances) after going through this cancer crap together. And if any of them ever has to go through something similar, I'm there (even if it means drain duty).

One last thing ... I can't help but feel that the fact that I've been single and self-sufficient for a long time was a huge boon to my recovery. While I did receive a lot of support from friends and family and Twitter buddies, etc., most of the strength/support came from within. I was the one who got myself up off the couch to go for walks and runs after surgery and during chemo and rads. I was the one who showed up for tap dance class while still wearing my drains. Not having one person to lean on made me lean on myself, which is what all of us -- ultimately -- need to do. I tried to be my own best friend and my own best advocate and I think it made a big difference with regard to kicking cancer's sorry ass. I've been single for most of my adult life and have even developed a bit of a writing platform regarding the single life with a book (How to Date in a Post-Dating World), an anthology of essays (Single State of the Union) and a humor column (Single Shot), published by the now-defunct Seattle P-I.

For me, singledom is a natural state. Instead of being cloistered away as one half of a couple, I have a huge circle of friends -- people I've worked with, people I've gone to school with, fellow writers, gal pals, neighborhood buddies, drinking buddies, old boyfriends, sources that turned into friends, the list goes on and on. I also have four sisters, all of whom I'm close with. I had so many people I needed to tell about the breast cancer, in fact, I eventually started an email newsletter (the Cancertown Gazette). And then a blog (www.doublewhammied.com).

My sisters probably did most of the heavy lifting when it came to day-to-day support during my breast cancer treatment. They were there for me before and after surgery, even helping me with drain duty (and an apartment makeover). They also went to some of the early doctors' appointments (when things were still very dark and raw and scary), talked with me daily via phone, sat through a couple of sessions of chemo (and chemo recovery) with me and prepared a ton of meals for my freezer. My friends were equally supportive, doing everything from bringing me food (pie! lasagna! homemade soup!) to giving me lifts to radiation to sending flowers and other gifts to taking me on weekend getaways. Friends and family both chipped in financially to help me pay for a wig made from my own hair (and those are not cheap). They also stayed in contact with me regularly, took me for walks when the chemo knocked the legs out from under me, and in general, made me feel loved and appreciated and cared for at all times.

In addition to friends and family, I got a lot of support and info from other breast cancer survivors, including one woman (a friend of a friend) who gave me her prostheses (she'd only used them for about two weeks before she went through reconstruction) and my first pocketed bra. The breast cancer community on Twitter was another great place to connect with men and women going through the same (or similar) experiences. As a single person (and a journalist), I'm used to reaching out to others and the people on Twitter have been incredible. Ditto for my Facebook friends (although I didn't officially "come out" on Facebook until I was almost through with treatment).

To be honest, I don't think I would have received as much support and love and help if I were married. That's a tremendous burden for one person to shoulder which is why so many marriages buckle and break under the pressure of a cancer diagnosis. If anything, I feel like I grew closer to my friends and family (and even some heretofore casual acquaintances) after going through this cancer crap together. And if any of them ever has to go through something similar, I'm there (even if it means drain duty).

One last thing ... I can't help but feel that the fact that I've been single and self-sufficient for a long time was a huge boon to my recovery. While I did receive a lot of support from friends and family and Twitter buddies, etc., most of the strength/support came from within. I was the one who got myself up off the couch to go for walks and runs after surgery and during chemo and rads. I was the one who showed up for tap dance class while still wearing my drains. Not having one person to lean on made me lean on myself, which is what all of us -- ultimately -- need to do. I tried to be my own best friend and my own best advocate and I think it made a big difference with regard to kicking cancer's sorry ass.

There's a Certified Mastectomy Fitter in Chicago, Pattie Cagney Sheehan, owner of Second Act. While the prostheses are not low-cost, many insurance providers cover them. Here's the information for Second Act:

3020 N. Lincoln Avenue

Chicago, IL 60657-4208

phone: 773.525.2228

mobile: 312.560.3076

fax: 773.348.2228

pattie@secondactchicago.com

www.secondactchicago.com

The following are resources that provide free breast prostheses:

Breast Cancer Network of Strength , formally known as Y-ME helps breast cancer patients and survivors regain their sense of well-being and self-confidence by providing bras, wigs, and/or prostheses at no cost to those with limited financial resources. www.y-me.org or 1-800-221-2141

CancerCare under their Women's Cancer Program, offers financial assistance and counseling, support groups, and patient education. They also provide free wigs and breast prostheses to women who have lost their hair or a breast as a result of their cancer treatment. 1-800-813-HOPE (4673)

Crickett's Answer for Cancer 1-301-935-4411 provides free wigs, mastectomy products, mastectomy and lymphedema massage, facials, and other pampering services, as a way to keep a woman feeling feminine and beautiful despite losing her hair and/or breasts.

There are many different Breast Cancer organisations in New Zealand. The largest is the New Zealand Breast Cancer Foundation which does a lot of work around education and awareness. All the organisations try to work together and there is overlap of funding. For example NZBCF helps fund Sweet Louise (for women with metastatic disease), Pink Pilates and Encore programs (exercise programs for women recovering from surgery and chemotherapy treatment. There is Breast Cancer Support that provides local suppor groups for women with Breast Cancer. I am involved with, and on the committee of, Breast Cancer Aotearoa Coalition who has many member groups, including those mentioned and we take on a more pro-active, advocacy type role. There are also organisations such as the Breast Cancer Research Trust which concentrate on raising money to help fund research. There are many different Breast Cancer organisations in New Zealand. The largest is the New Zealand Breast Cancer Foundation which does a lot of work around education and awareness. All the organisations try to work together and there is overlap of funding. For example NZBCF helps fund Sweet Louise (for women with metastatic disease), Pink Pilates and Encore programs (exercise programs for women recovering from surgery and chemotherapy treatment. There is Breast Cancer Support that provides local suppor groups for women with Breast Cancer. I am involved with, and on the committee of, Breast Cancer Aotearoa Coalition who has many member groups, including those mentioned and we take on a more pro-active, advocacy type role. There are also organisations such as the Breast Cancer Research Trust which concentrate on raising money to help fund research.

We are very lucky to have the Sweet Louise organisation here in New Zealand. It was founded by the Louise Perkins Foundation in memory of Louise,a young woman who died of metastatic breast cancer after a long illness. The foundation was founded to support other women going through similar circumstances.
Some of the support services it provides are a private closed online forum for members to talk to each other, monthly meetings in 3 of our main cities and support co-ordinators that can help woman in a variety of ways. There is also a voucher system that gives each women a certain amount of vouchers to spend every 6 months on services to help them. They may be used on a variety of services such as home handyman work around the house, complementary therapies or pampering as a special treat.
The opportunity to meet with other women dealing with the same issues of metastatic disease is invaluable, and recently we banded together to contribute to a book of short stories and poems about what it was like living with secondary breast cancer. This has been published under the title 'Oysters for Lunch' and is available from the Sweet Louise website.
Sweet Louise has been a great support to me in dealing with ongoing treatment, the support from both the organisation itself and the other women with metastatic disease who are members is wonderful and I am very grateful for it We are very lucky to have the Sweet Louise organisation here in New Zealand. It was founded by the Louise Perkins Foundation in memory of Louise,a young woman who died of metastatic breast cancer after a long illness. The foundation was founded to support other women going through similar circumstances.
Some of the support services it provides are a private closed online forum for members to talk to each other, monthly meetings in 3 of our main cities and support co-ordinators that can help woman in a variety of ways. There is also a voucher system that gives each women a certain amount of vouchers to spend every 6 months on services to help them. They may be used on a variety of services such as home handyman work around the house, complementary therapies or pampering as a special treat.
The opportunity to meet with other women dealing with the same issues of metastatic disease is invaluable, and recently we banded together to contribute to a book of short stories and poems about what it was like living with secondary breast cancer. This has been published under the title 'Oysters for Lunch' and is available from the Sweet Louise website.
Sweet Louise has been a great support to me in dealing with ongoing treatment, the support from both the organisation itself and the other women with metastatic disease who are members is wonderful and I am very grateful for it

I personally have specialty-level training in the field of Pain Medicine, having completed a fellowship in Pain and Palliative Care, so I have an understanding of the varied options and multifaceted approaches to pain management. With my background in psychiatry, I additionally have an understanding about the importance of the interdisciplinary approach, as its roots stem from psychiatric care is best applied to treating any psychiatric or medical condition, including quite substantially the treatment of pain, particularly when chronic, as well as in the cancer patient. For better or worse, the experience of pain is a complex and multidimensional phenomenon, so its management also requires utilizing an array of techniques. In addition to the continuing advances in interventional pain medicine, which include nerve blocks and injections and infusions or continuous delivery of medications including anesthetic agents and opioid pain medications as well as corticosteroids which have potent anti-inflammatory properties, as well as electrical stimulation, delivered to or around the central nervous system; and the use of medications in a variety of classes – opioid pain medications which can be administered in pill form and via host of other routes, corticosteroids, NSAIDs (non-steroidal anti-inflammatory drugs) many of which are available over the counter but present a host of potential medical risks, what are called muscle relaxants, anesthetic agents, and other classes called “adjuvants” which include some antidepressants, anti-seizure medications also used in psychiatry, and other channel blockers; there are other somatic treatments that involve electrical stimulation as well as the delivery of other types of energy – thermal, mechanical, or chemical – across the surface of the body, such as Transcutaneous Electric Nerve Stimulation or Cranial Electric Stimulation – and physical therapy – key to most types of persistent pain to improve functional status, as well as psychotherapeutic techniques, ranging from supportive psychotherapy and cognitive behavioral therapy, to incorporating mindfulness-based, relaxation, and hypnosis/ hypnotherapy techniques, to biofeedback, and support groups, along with non-medical treatments such as massage, acupuncture, and other mind-body approaches.

I am not an interventionalist, so I basically do nothing with a needle. That rules out a fair amount of the mainstream approach to pain management as it exists in practice today. Psychiatry happens to be one of four medical fields in which there is formal sub-specialization in Pain Medicine, the others being Neurology, Physical Medicine and Rehabilitation (PM&R or Physiatry), and Anesthesiology which is the most common. Since training generally entails the same program regardless of specialty, anyone completing a fellowship program in the field can pursue expertise in the main existing approaches. The involvement of psychiatry comes from an understanding, which certainly needs much further characterization, that psychiatric factors are indelibly and complicatedly interwoven with the experience of pain, both driving and exacerbating or, for that matter, ameliorating, pain and resulting from it. While people, particularly those who suffer from the very real experience of pain, are troubled when they perceive others think that “it is all in their head”, and, conversely, family, friends, lay people, or even clinicians, can become distraught when dealing with someone who is debilitated from that which does not present with a clear physical manifestation or appearance, there is no truth more useful to recognize in dealing with the mysteries of pain than the fact that “pain is in the brain”. While it is a controversial and weighted statement, there can be nothing closer to the truth. In dealing with psychiatric problems, psychiatrists and their patients, alike, are used to confronting stigma, and dealing with uncertainty, complexity, and compound logic which may involve, and typically expects, more than one explanation for things, so that dealing with the, at times elusive, problem of pain is something which we may be particularly adept and uniquely skilled to pursue, though one might argue that the trouble with pain is even greater due to the expectation of a physical explanation that often escapes the understanding of what is typically framed as a physical problem. However, a distinction must be made from the term “nociception” which is specifically defined as the ‘neural processing of noxious stimuli’ and is that which is specifically at play when we think about the sensation from the physically harmful effects of tissue injury. "Pain", on the other hand, the end product of nociception, if you will, is a perceptual phenomenon and, as such, is nothing other than a brain phenomenon. With this in mind (no pun intended) how could one’s emotions and thoughts, also perceived and processed, respectively, in the brain, not affect and interact with the experience of pain? This is such a simple concept that is unfortunately lost on so many, because it is, at the same time, somewhat difficult to grasp with respect to our expectations.

This all goes to explain the underpinnings of the multidimensional approach to pain, and the richness and importance of the psychiatric understanding, support, and treatment for someone with pain, and the value added by the involvement of a psychiatrist, with expertise in medical pain management, in the approach to the patient with pain. What is called ‘needle-jockeying’ involves highly technical procedures which would not be conducive to a psychotherapeutic encounter. Assessment of non-interventional pharmacologic approaches to pain is within my practice, as my input with potentially overlapping psychiatric medication can be helpful, but, without being able to give details depending on the case and the setting, I generally do so in the context of multidisciplinary pain management. In addition to medication evaluation for juxtaposed pain and psychiatric issues, psychotherapy is a main focus of all of my practice, on some level. In addition to psychopharmacology, I have expertise in psychotherapy which incorporates basic training in hypnosis, an evidence-based intervention for pain. The meaning of pain to a given individual, and the dramatic effects it has in changing one’s life when it enters, calls for such work. I personally have specialty-level training in the field of Pain Medicine, having completed a fellowship in Pain and Palliative Care, so I have an understanding of the varied options and multifaceted approaches to pain management. With my background in psychiatry, I additionally have an understanding about the importance of the interdisciplinary approach, as its roots stem from psychiatric care is best applied to treating any psychiatric or medical condition, including quite substantially the treatment of pain, particularly when chronic, as well as in the cancer patient. For better or worse, the experience of pain is a complex and multidimensional phenomenon, so its management also requires utilizing an array of techniques. In addition to the continuing advances in interventional pain medicine, which include nerve blocks and injections and infusions or continuous delivery of medications including anesthetic agents and opioid pain medications as well as corticosteroids which have potent anti-inflammatory properties, as well as electrical stimulation, delivered to or around the central nervous system; and the use of medications in a variety of classes – opioid pain medications which can be administered in pill form and via host of other routes, corticosteroids, NSAIDs (non-steroidal anti-inflammatory drugs) many of which are available over the counter but present a host of potential medical risks, what are called muscle relaxants, anesthetic agents, and other classes called “adjuvants” which include some antidepressants, anti-seizure medications also used in psychiatry, and other channel blockers; there are other somatic treatments that involve electrical stimulation as well as the delivery of other types of energy – thermal, mechanical, or chemical – across the surface of the body, such as Transcutaneous Electric Nerve Stimulation or Cranial Electric Stimulation – and physical therapy – key to most types of persistent pain to improve functional status, as well as psychotherapeutic techniques, ranging from supportive psychotherapy and cognitive behavioral therapy, to incorporating mindfulness-based, relaxation, and hypnosis/ hypnotherapy techniques, to biofeedback, and support groups, along with non-medical treatments such as massage, acupuncture, and other mind-body approaches.

I am not an interventionalist, so I basically do nothing with a needle. That rules out a fair amount of the mainstream approach to pain management as it exists in practice today. Psychiatry happens to be one of four medical fields in which there is formal sub-specialization in Pain Medicine, the others being Neurology, Physical Medicine and Rehabilitation (PM&R or Physiatry), and Anesthesiology which is the most common. Since training generally entails the same program regardless of specialty, anyone completing a fellowship program in the field can pursue expertise in the main existing approaches. The involvement of psychiatry comes from an understanding, which certainly needs much further characterization, that psychiatric factors are indelibly and complicatedly interwoven with the experience of pain, both driving and exacerbating or, for that matter, ameliorating, pain and resulting from it. While people, particularly those who suffer from the very real experience of pain, are troubled when they perceive others think that “it is all in their head”, and, conversely, family, friends, lay people, or even clinicians, can become distraught when dealing with someone who is debilitated from that which does not present with a clear physical manifestation or appearance, there is no truth more useful to recognize in dealing with the mysteries of pain than the fact that “pain is in the brain”. While it is a controversial and weighted statement, there can be nothing closer to the truth. In dealing with psychiatric problems, psychiatrists and their patients, alike, are used to confronting stigma, and dealing with uncertainty, complexity, and compound logic which may involve, and typically expects, more than one explanation for things, so that dealing with the, at times elusive, problem of pain is something which we may be particularly adept and uniquely skilled to pursue, though one might argue that the trouble with pain is even greater due to the expectation of a physical explanation that often escapes the understanding of what is typically framed as a physical problem. However, a distinction must be made from the term “nociception” which is specifically defined as the ‘neural processing of noxious stimuli’ and is that which is specifically at play when we think about the sensation from the physically harmful effects of tissue injury. "Pain", on the other hand, the end product of nociception, if you will, is a perceptual phenomenon and, as such, is nothing other than a brain phenomenon. With this in mind (no pun intended) how could one’s emotions and thoughts, also perceived and processed, respectively, in the brain, not affect and interact with the experience of pain? This is such a simple concept that is unfortunately lost on so many, because it is, at the same time, somewhat difficult to grasp with respect to our expectations.

This all goes to explain the underpinnings of the multidimensional approach to pain, and the richness and importance of the psychiatric understanding, support, and treatment for someone with pain, and the value added by the involvement of a psychiatrist, with expertise in medical pain management, in the approach to the patient with pain. What is called ‘needle-jockeying’ involves highly technical procedures which would not be conducive to a psychotherapeutic encounter. Assessment of non-interventional pharmacologic approaches to pain is within my practice, as my input with potentially overlapping psychiatric medication can be helpful, but, without being able to give details depending on the case and the setting, I generally do so in the context of multidisciplinary pain management. In addition to medication evaluation for juxtaposed pain and psychiatric issues, psychotherapy is a main focus of all of my practice, on some level. In addition to psychopharmacology, I have expertise in psychotherapy which incorporates basic training in hypnosis, an evidence-based intervention for pain. The meaning of pain to a given individual, and the dramatic effects it has in changing one’s life when it enters, calls for such work.

The Visiting Nurses Association in your area are also very helpful. They come right to the home and help with medical as well as day-day, life issues. The first place to look would be the social work department in the hospital you are being treated at. If you are a breast cancer patient you have many of organizations that help....SHARE, the American Cancer Society, Gilda Club ect.

Online support is a great option too....TalkAboutHealth is a great place to start!!

At Columbia Presbyterian I work with Women At Risk, an organization that supports women with breast cancer. I run a support group and we also have a volunteer library staffed by survivors.

This is such a good, important question.

What I had found during my routine monthly breast self exam was actually a very subtle dimple. I found this after a mammogram and a gynecologist missed it. It took me two weeks to gather up the courage to make an appointment to see my gynecologist to point out the problem.

I was really scared and didn't want to seek out medical help, but I forced myself to speak up and tell my doctor that something was wrong. He listened to me and ordered a diagnostic mammogram, which then found the abnormality.

One of the keys is having a good general doctor in place because a quality general doctor knows great specialists. The saying that birds of a feather flock together is so true.

The key to seeking out the medical care I needed was to act in spite of my fears and to speak up when I didn't like the way I was treated by a medical staff member, including doctors. The key to obtaining quality care was my perseverence. No matter how much a person is frustrated, scared, or feels like shying away from the medical situation, he/she has no choice but to see it through and keep persevering until he/she gets the medical help he/she wants and needs.

It was not easy for me to stay strong and adament about my own care. But I thought of what was at stake here, and it was my life. That was all the motivation I had to keep going toward my goal of quality care.



This is such a good, important question.

What I had found during my routine monthly breast self exam was actually a very subtle dimple. I found this after a mammogram and a gynecologist missed it. It took me two weeks to gather up the courage to make an appointment to see my gynecologist to point out the problem.

I was really scared and didn't want to seek out medical help, but I forced myself to speak up and tell my doctor that something was wrong. He listened to me and ordered a diagnostic mammogram, which then found the abnormality.

One of the keys is having a good general doctor in place because a quality general doctor knows great specialists. The saying that birds of a feather flock together is so true.

The key to seeking out the medical care I needed was to act in spite of my fears and to speak up when I didn't like the way I was treated by a medical staff member, including doctors. The key to obtaining quality care was my perseverence. No matter how much a person is frustrated, scared, or feels like shying away from the medical situation, he/she has no choice but to see it through and keep persevering until he/she gets the medical help he/she wants and needs.

It was not easy for me to stay strong and adament about my own care. But I thought of what was at stake here, and it was my life. That was all the motivation I had to keep going toward my goal of quality care.

I agree too, I went to a support group for 5 years. Was not a pity party but a lot of supportive women who are good friends now. We laughed a lot and there was crying but not nearly as much of that as the laughter.

I also think patients helping patients help doctors. You get suggestions on questions to ask and that could help the doctor patient relationship. The patients can be more focused on what they should talk to their doctor about. I think support groups area great because you talk to real people about the issues they experience. NO doctor, not even a concerned nurse can fully understand the many physical, emotional, and mental issues that arise from diagnosis, treatment and just living on. I love to be with a group of women. It balances out. I was part of SHARE in NYC which uses peeer faciitators. I liked that. It was rarely a 'pity' party. And one makes long-term friends.

I think this is a difficult choice for many women faced with this decision. Historically, mastectomy was the only operation available for breast cancer, and when the early clinical trials were conducted comparing mastectomy to lumpectomy, the surgeons and researchers faced a lot of criticism as it was a widely held belief that a radical operation was necessary if there was any chance of cure.

We now know thanks to that research, that there is no difference in the overall survival if a woman undergoes a mastectomy or a lumpectomy. However lumpectomy alone will result in a higher rate of the cancer returning in the breast, so radiation therapy after lumpectomy is necessary.

Absolute contraindications to breast conservation are multifocal cancer (cancer in multiple quadrants of the breast), inability to achieve an acceptable cosmetic result, and contraindications to radiation therapy (certain collagen-vascular diseases such as scleroderma). A history of prior radiation therapy to the breast is often a contraindication to breast conservation as well, but several clinical trials are examining the safety and effectiveness of limited radiation therapy in patients who have previously undergone whole-breast radiation.

Other than that, for most women with early-stage breast cancer, they do have choices. We tend to think having options is a good thing, but many women do struggle tremendously with this decision. I think this is a difficult choice for many women faced with this decision. Historically, mastectomy was the only operation available for breast cancer, and when the early clinical trials were conducted comparing mastectomy to lumpectomy, the surgeons and researchers faced a lot of criticism as it was a widely held belief that a radical operation was necessary if there was any chance of cure.

We now know thanks to that research, that there is no difference in the overall survival if a woman undergoes a mastectomy or a lumpectomy. However lumpectomy alone will result in a higher rate of the cancer returning in the breast, so radiation therapy after lumpectomy is necessary.

Absolute contraindications to breast conservation are multifocal cancer (cancer in multiple quadrants of the breast), inability to achieve an acceptable cosmetic result, and contraindications to radiation therapy (certain collagen-vascular diseases such as scleroderma). A history of prior radiation therapy to the breast is often a contraindication to breast conservation as well, but several clinical trials are examining the safety and effectiveness of limited radiation therapy in patients who have previously undergone whole-breast radiation.

Other than that, for most women with early-stage breast cancer, they do have choices. We tend to think having options is a good thing, but many women do struggle tremendously with this decision.

I was diagnosed with triple negative which is a grade 3. Although no one likes the diagnosis of cancer, grade 1 of course is not as aggressive as some. My personal belief is to try to conserve the breast whenever possible. The statistics for re occurrence are no different whether you have a lumpectomy or a mastectomy. However, there may be circumstances when a mastectomy may be advisable. Some people may think a mastectomy may guarantee them to be cancer free which may not be the case at all. This is a personal decision and you will need to weigh your options very carefully. Take into advisement what you surgeon and other doctors recommend, think about it, research what you can, and then make a decision that is good for you. I, myself did just that-my surgeon advised me to have a mastectomy after a second lump was discovered, I researched, thought about it, got several opinions and decided against it. And I am glad I did since on the third surgery which was exploratory there was no cancer found. Each person is different so just try to decide what you really feel in your heart is the best way for you to go. My heart goes out to you. What a tough, tough day it must be for you. I remember walking around in a shocked limbo state for a few days.

I was diagnosed with a grade 3/stage 1 tumour in October of 2009. Given my age (30) and my BRCA1 gene mutation, my doctors recommended that I start with a lumpectomy and four rounds of chemotherapy, but also suggested a follow up bilateral mastectomy and reconstruction as a precaution against a second breast cancer diagnosis (either in the same or the other breast). All of this being said, my aunt who has the same genetic mutation had breast cancer (stage 2) 18 years ago and opted to have a lumpectomy instead of a mastectomy. She still gets screened regularly, but has been cancer free ever since. It was not an easy decision, but I went through the double mastectomy in May of 2010 and had my final stage of the reconstruction in January of this year. I won't lie and tell you it was easy (physically or emotionally), but I am so relieved to never have to get another mammogram or MRI again. The results don't look as good as I imagined, but I am alive and cancer free. For this, I will always be grateful.

Know that there is no right answer because what might be right for me; might not be right for you. Although so many of us have been through breast cancer, we all have a unique story. Thank you for reaching out to the community and please let me know if you have any follow up questions or just need an ear. Big hugs, Terri

The first thing a loved one needs to realize is that they are no longer dealing with the same person they have known and loved their whole relationship. Once someone has been diagnosed with a life-threatening illness, their entire personification can change. They are no longer able to sort information as before. I am sure it is a coping mechanism, but the brain seems to check out. So everyone involved will have to relearn how to relate to this new person.

If you are the main caregiver, you need to be prepared to take over the role of eyes and ears. Bring a notebook with you to doctor's appointments. If you don't understand what is being said to you or your loved one, don't hesitate to ask for clarification. Write down everything because what your loved one hears and what you hear will be totally different. Patients really can only process bits and pieces and because most people are going to be dealing with terms they have never heard before, it is extremely important in those first few visitations with physicians to understand what is being said. Again, write it down and then you will always have it as a reference.

Also, a caregiver is going to find that their loved one will be more irritable than before. They will probably take their frustration out on you because you are their safety net. They know you will be there for them no matter what, so you are going to get the brunt of the emotions. When you feel that you are being overly put upon, give yourself permission to retreat. Bring in a friend to help for a day and take some time off. You can't be of help to the patient if you are too stressed too. All this lashing out comes from fear of the unknown. There are emotional stages to a cancer diagnosis, just as in a death, because in a lot of ways, it is like a death in that the patient has lost their reality as they knew it. You have too and there will be no time to categorize how to deal with it. I strongly recommend Elizabeth Kubler's "The Five Stages of Grief." It will be a roadmap to the emotional journey everyone involved will be taking.

If you are not the main caregiver, there are still plenty of ways to help. First, be a support system for the main caregiver. They are going through as many emotions as the patient and they are asked to carry the sometimes impossible burden of juggling their own responsibilities with the newfound ones from the diagnosis. They also need to vent and if they do, sometimes it seems like they are unfeeling or unsympathetic, but nothing is further from the truth. They are human and need to express their frustration, just as the patient does. Be that shoulder for them and let them know they have a safe place to fall if they need to.

Additionally, and I can't stress this enough, be supportive of whatever decision a patient may make about their care. You have not walked in their shoes and so you cannot say what is the right or wrong thing to do. Whatever you feel about it, unless it is supportive, keep it to yourself.
The first thing a loved one needs to realize is that they are no longer dealing with the same person they have known and loved their whole relationship. Once someone has been diagnosed with a life-threatening illness, their entire personification can change. They are no longer able to sort information as before. I am sure it is a coping mechanism, but the brain seems to check out. So everyone involved will have to relearn how to relate to this new person.

If you are the main caregiver, you need to be prepared to take over the role of eyes and ears. Bring a notebook with you to doctor's appointments. If you don't understand what is being said to you or your loved one, don't hesitate to ask for clarification. Write down everything because what your loved one hears and what you hear will be totally different. Patients really can only process bits and pieces and because most people are going to be dealing with terms they have never heard before, it is extremely important in those first few visitations with physicians to understand what is being said. Again, write it down and then you will always have it as a reference.

Also, a caregiver is going to find that their loved one will be more irritable than before. They will probably take their frustration out on you because you are their safety net. They know you will be there for them no matter what, so you are going to get the brunt of the emotions. When you feel that you are being overly put upon, give yourself permission to retreat. Bring in a friend to help for a day and take some time off. You can't be of help to the patient if you are too stressed too. All this lashing out comes from fear of the unknown. There are emotional stages to a cancer diagnosis, just as in a death, because in a lot of ways, it is like a death in that the patient has lost their reality as they knew it. You have too and there will be no time to categorize how to deal with it. I strongly recommend Elizabeth Kubler's "The Five Stages of Grief." It will be a roadmap to the emotional journey everyone involved will be taking.

If you are not the main caregiver, there are still plenty of ways to help. First, be a support system for the main caregiver. They are going through as many emotions as the patient and they are asked to carry the sometimes impossible burden of juggling their own responsibilities with the newfound ones from the diagnosis. They also need to vent and if they do, sometimes it seems like they are unfeeling or unsympathetic, but nothing is further from the truth. They are human and need to express their frustration, just as the patient does. Be that shoulder for them and let them know they have a safe place to fall if they need to.

Additionally, and I can't stress this enough, be supportive of whatever decision a patient may make about their care. You have not walked in their shoes and so you cannot say what is the right or wrong thing to do. Whatever you feel about it, unless it is supportive, keep it to yourself.

It's a great question! To address first the issues of having lobular, I'm not sure I ever did find anyone else with it, nor do I think it mattered much since the treatment protocols are similar to those of patients with invasive ductal carcinoma. (Today they are often classified together as Luminal A, Luminal B, and so on anyway.)

As for where I turned, I think the most significant issues for me related to having been diagnosed at a relatively young age. My first concern was helping my son understand what was going on, and that took resources with particular knowledge, that frankly I did not find early enough. Today things are much better in that regard!!

As for my own support...my friends and family stepped up in truly moving and inspiring ways. In addition to a husband who never left my side, I had a tight circle of friends who were there for me each step of the way. That said, sometimes we need people who have "been there" when it comes to cancer...

One of the very best resources I found was the online community at the Young Survival Coalition (http://www.youngsurvival.org/). In addition to being a great place to ask questions (Talk About Health wasn't around!), the women there fully understood the complexity of parenting through cancer, feeling "too young," facing fertility issues, the limited treatment options for pre-menopausal women, building a career through cancer and so on.

Sometimes, after treatment, there is a drop that patients experience, and that was when I sought a local support group at weSPARK (http://wespark.org/). It was as inviting as walking into someone's living room, with services that ranged from traditional support groups to reiki, tai chi, meditation and reflexology, to support groups for my husband and son. They even have a gym next door that helps support women thought treatment and recovery! They also gave me the chance to "pay it forward" though support groups and scrapbooking classes I was able to lead.

Unfortunately they can be hard to find, but there are some amazing resources out there...and the online community makes them accessible, even for people in the most remote of areas. It's not always easy, especially as women, to acknowledge that we can't do it all alone. I try to remind women that in this, like it most things, we do best when we are in community...that seeking support is not "taking" but a process of give AND take. It's a great question! To address first the issues of having lobular, I'm not sure I ever did find anyone else with it, nor do I think it mattered much since the treatment protocols are similar to those of patients with invasive ductal carcinoma. (Today they are often classified together as Luminal A, Luminal B, and so on anyway.)

As for where I turned, I think the most significant issues for me related to having been diagnosed at a relatively young age. My first concern was helping my son understand what was going on, and that took resources with particular knowledge, that frankly I did not find early enough. Today things are much better in that regard!!

As for my own support...my friends and family stepped up in truly moving and inspiring ways. In addition to a husband who never left my side, I had a tight circle of friends who were there for me each step of the way. That said, sometimes we need people who have "been there" when it comes to cancer...

One of the very best resources I found was the online community at the Young Survival Coalition (http://www.youngsurvival.org/). In addition to being a great place to ask questions (Talk About Health wasn't around!), the women there fully understood the complexity of parenting through cancer, feeling "too young," facing fertility issues, the limited treatment options for pre-menopausal women, building a career through cancer and so on.

Sometimes, after treatment, there is a drop that patients experience, and that was when I sought a local support group at weSPARK (http://wespark.org/). It was as inviting as walking into someone's living room, with services that ranged from traditional support groups to reiki, tai chi, meditation and reflexology, to support groups for my husband and son. They even have a gym next door that helps support women thought treatment and recovery! They also gave me the chance to "pay it forward" though support groups and scrapbooking classes I was able to lead.

Unfortunately they can be hard to find, but there are some amazing resources out there...and the online community makes them accessible, even for people in the most remote of areas. It's not always easy, especially as women, to acknowledge that we can't do it all alone. I try to remind women that in this, like it most things, we do best when we are in community...that seeking support is not "taking" but a process of give AND take.

A caregiver can provide research, present options and assist the patient in getting what the patient thinks will get them well. One option could be presented to the patient is to see a therapist. After that it's up to the patient to the side on the course of their treatment.

I know it's difficult for caregivers to watch the patient take what the caregiver believes is the wrong course of treatment, or not rest enough, or eat the "wrong" food.
Respect that the patient is in control of their life and ask what you can do to be helpful. Faina. Both therapy and coaching are client-centered which means it must be the choice of the cancer patient to seek therapy or coaching. As a caregiver, loved one or friend of someone with cancer if you notice they are struggling with issues, if you are involved with the medical team and aren't comfortable bringing up the subject yourself, you could privately speak to someone on the team (clinical director, oncology nurse or oncologist).

Let them know you feel your loved one may benefit from having a coach or therapist to speak to and why - what you've noticed may be coming up for that person where they need extra support. The medical team can then assess and possibly offer referrals or recommendations.

I often had sidebar conversations with my late husband's team however I was empowered by him to do so when we created our plan of how we would work together on his healing journey. If you don't have this kind of role defined first, the cancer patient can feel betrayed so be clear that this is part of your role in the process.

(The caveat to all of this is that if you ever feel like the cancer patient is so impacted emotionally, depressed or distraught that they may harm themselves you need to communicate this right away to a medical professional.)

If you want to have the conversation yourself, let them know that you have some concerns and you want their permission to have a conversation about whether they may need some extra support. We can't assume we know what is going on for the other person but you can check in with them. Something as simple as "I just want to check in to see how you're doing with everything that has been going on since you started treatment?" shows caring and concern on your part. Often people will say fine to avoid bringing others down so following up with something like, "what are your two biggest challenges right now?" can be a door opener. If they walk through the door, then you can share if therapy or coaching has helped you or someone you know and how it can help (you need to do your research first and have some resources ready to offer up - or offer to help them find information they need). "I've talked to some friends who found coaching or therapy to deal with those challenges can be really effective. What would it be like for you to have this kind of support?" If they say, great...you can go from there. If they say no, then ask them what else might help them with their challenges.

Be sure you are doing this at an appropriate time and in a way that keeps it private and confidential, not in front of a group of people. Finally, leave it up to them and if they become defensive at any time, just let them know you brought it up because you care.

I just answered the question, "Why Every Cancer Survivor Should Have Access to a Patient Navigator" on my website, WhereWeGoNow.com, (http://ht.ly/5kBqI) I'll reprint it here:

How do I love my patient navigator? Let me count the ways. I’ve sung the praises of my breast nurse navigator, Sarah Mandel, RN, LSW, CBPN-C, many times in various posts. She came into my life the day after my mastectomy – and with her came the slow bloom of emotional recouperation. I’d like to share what a patient navigator, and specifically a breast nurse navigator does, and why that person will become your absolute best friend in the world.

According to the Carol G. Simon Cancer Center at Overlook Hospital, the breast nurse navigator “is a dedicated, trained professional with extensive knowledge of breast disease and the resources for women with breast cancer. As an advocate for the patient, she will:

1.Provide individualized attention to the patient to respond to her unique needs.
2.Provide medical information and education, as well as share knowledge regarding support services and resources
3.Schedule and coordinate appointments and follow up care, as well as track patients to ensure completion of the recommended treatment plan
4.Assist in eliminating barriers by identifying and referring patients to appropriate medical, social and community resources
5.Help explain medical terms and processes to the patient and her caregivers throughout the course of treatment and post treatment
6.Locate services that can help the patient and her caregivers deal with the stress of a cancer diagnosis
Sarah was the first person I met who understood what I was going through and with whom I could be totally honest. I was able to rely on her completely, without worrying about how that would affect her, as I did with family and friends. It was so comforting to know I didn’t have to carry that burden alone anymore.

Sarah gave me her cell phone number! I didn’t call it everyday, mind you. But when I needed her, she was literally there for me. One day she answered her phone and I launched into my problem. After a few minutes, I realized I wasn’t being considerate and asked if she was busy. She admitted she was eating lunch! We agreed she would call me back, which she quickly did and we laughed about how she was trying to listen to me while quietly chewing her pizza.

Each time I discussed a medical issue with Sarah, she surprised me with the question “Do you want me to make a call for you?” I never called her for that reason. I guess I’m so used to doing things myself that, even after the first time she called a doctor’s office for me, I was still surprised when she offered to do it again. But feeling surprised was the least of it – mostly I was relieved that I could hand the issue over to her capable hands and have one less burden to carry.

Sarah called me too, on a regular basis, just to check up on me. Hearing her voice, I always knew she truly cared. And she didn’t limit her assistance to what she alone brought to the table. She showered me with reading material, resources and other support services. She is a one-woman resource library.

Every cancer patient should have access to a patient navigator. I liken it to bobbing up and down in a tiny boat while the troubled waters of cancer threaten your very survival. Shouldn’t every person who has to sit in that boat have a navigator to help guide them over those waters and into safe harbor? Sarah is that person for me, and I am truly grateful to her and Overlook Hospital for being there every time I need it.

The term patient navigator is new. It was started by Dr. Harold Freeman after a study showed racial disparities in breast cancer outcomes. Navigators should be able to offer guidence through the health system.

There are different types of navigators, some have experience in the financial end while others like myself have experience with providing general and emotional support.

Well I can only speak to my position at NYP. We are hippa trained and understand the need for confidentiality. This is the same level of privacy held by the doctors and nurses. Well I can only speak to my position at NYP. We are hippa trained and understand the need for confidentiality. This is the same level of privacy held by the doctors and nurses.

The hardest part of being a patient navigator is not being able to give patients what that need ....the recession has affected the hospital too.

Some examples of this would be that I do not have enough wigs and prosthesis to give to patients.

The second hardest part of my job is working with people at such an emotional time....being a survivor helps me deal with this. The hardest part of being a patient navigator is not being able to give patients what that need ....the recession has affected the hospital too.

Some examples of this would be that I do not have enough wigs and prosthesis to give to patients.

The second hardest part of my job is working with people at such an emotional time....being a survivor helps me deal with this.