Support

1. I most likely will not die.

2. You can finish final while I have surgery, it's ok.

3. You can cut my hair before it fall out. You can't catch cancer; nothing you did or said caused your mom's cancer; you can help your mom while she's going through cancer!

Thank you, this is very helpful. I just believe that things become less scary when you aren't alone and you have someone you can talk to that can actually relate, not just sympatize.

Mary So you want to offer this person support but don't know her that well. It's a very nice thought, to help someone else get through the tough times in the early phases of diagnosis and treatment. Perhaps since you don't know her that well, if the opportunity presents itself with other mutual friends around, when she mentions it or someone asks how she is doing, you could speak up then. Or if you'd rather it be private, you could send her a card with a short note offering support and giving her the option to follow up with you. No loss if she never calls, no embarrassment in public etc.. Either way, you offered and that is very touching. People react in strange ways to bad news, be it illness or death in the family or whatever. Some rally, some retreat. The newly diagnosed can feel terribly lonely and overwhelmed, so your offer may be welcomed. If not, pat yourself on the back anyway. You are awesome!

Just the other day, a woman in my chiropractor's office said to me after overhearing that I was just diagnosed with breastcancer and had just had a double mastectomy: "Well, you can forget about the breast cancer because there are so many good things for that. What you really need to worry about NOW is this (pointing to and circling her pointer finger over her ovaries)! Shouldn't you to take those out too? There's a test for that you know"

Silence.... with the 'Are you Kidding me?' stare.....

"Well, for now, I think I'll just concentrate on my recovery from breast cancer, a double mastectomy and the beginning stages of breast reconstruction. And yes, I had THAT test and am BRCA 1 & 2 negative, ER/PR positive and lymph node negative and Oncotype DX test recurrence score 22"

Silence....on her part.

"So, if you'll excuse me now..." For some reason NUMEROUS people, upon hearing of my diagnosis, felt I should hear about their friend, parent, or neighbor who passed from breast cancer. Thankfully being a nurse, I know cancer is a word, not a sentence. Still, it did little for my morale.

I would say that this is very normal to have these difficulties, but would also say that with time most of my patients are very happy with their reconstructions, and these emotional difficulties usually go away with time. I also have a number of patients who have finished the reconstruction process and have volunteered to speak with new patients, and this can often be very helpful for new patients. Additionally, having a very understanding spouse or significant other, as well as family and/or friends, is usually very helpful. I would say that this is very normal to have these difficulties, but would also say that with time most of my patients are very happy with their reconstructions, and these emotional difficulties usually go away with time. I also have a number of patients who have finished the reconstruction process and have volunteered to speak with new patients, and this can often be very helpful for new patients. Additionally, having a very understanding spouse or significant other, as well as family and/or friends, is usually very helpful.

First of all, I would like to say that - of course - every patient has the right to choose her own treatment for breast cancer. And, furthermore, stopping in the middle of treatment is a personal decision. However, with that said, I fully understand why your radiation oncologist was frustrated by your choice.

Because you work in a cancer hospital, I assume that you are aware of the fact that if a woman chooses mastectomy, she does NOT require radiation after tumor removal. However, with lumpectomy, radiation is indeed the standard of care, and for good reason: no matter what the surgical margins are, no doctor can guarantee that microscopic cancer cells do NOT remain at the site. For this reason, without radiation therapy to kill any remaining cancer cells, local recurrence becomes a significantly higher risk.

As a survivor of invasive breast cancer-not DCIS-I chose to complete all recommended treatment to minimize my chances for local OR distant recurrences. And, knowing that I completed treatment has given me peace of mind as I have moved forward in my life after my diagnosis. Without that knowledge, I don't feel my emotional/psychological well-being could be where it is today.

Since you made a different choice, I would advise you to continue screening your breasts with regularity since local recurrence will always be a possibility. Also, please make sure your current gynecologist and internist are aware of your history so they can follow you closely to catch anything irregular before it is too late.
First of all, I would like to say that - of course - every patient has the right to choose her own treatment for breast cancer. And, furthermore, stopping in the middle of treatment is a personal decision. However, with that said, I fully understand why your radiation oncologist was frustrated by your choice.

Because you work in a cancer hospital, I assume that you are aware of the fact that if a woman chooses mastectomy, she does NOT require radiation after tumor removal. However, with lumpectomy, radiation is indeed the standard of care, and for good reason: no matter what the surgical margins are, no doctor can guarantee that microscopic cancer cells do NOT remain at the site. For this reason, without radiation therapy to kill any remaining cancer cells, local recurrence becomes a significantly higher risk.

As a survivor of invasive breast cancer-not DCIS-I chose to complete all recommended treatment to minimize my chances for local OR distant recurrences. And, knowing that I completed treatment has given me peace of mind as I have moved forward in my life after my diagnosis. Without that knowledge, I don't feel my emotional/psychological well-being could be where it is today.

Since you made a different choice, I would advise you to continue screening your breasts with regularity since local recurrence will always be a possibility. Also, please make sure your current gynecologist and internist are aware of your history so they can follow you closely to catch anything irregular before it is too late.

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.

I completely agree with the answer above--start small. Some writers are able to pound out page after page but that is clearly not you. So go with a smaller goal. I think you will find that crafting a single sentence that makes sense and speaks of your experience is highly rewarding. Hi! Personally, I think that when you write for yourself, there is no such thing as being a ‘good or bad’ writer. Often times it comes down to just doing it – getting those words onto the page. That’s really the first major hurdle. After that it’s so much easier to write something to make yourself happy. Here are a couple exercises you might like:

For poetry – choose a situation, emotion, memory you’d like to explore. Then begin to write down a list of words or phrases that you connect with the experience. Once that’s done, take a look at your list and see how these words fit together. See if you can piece together a ‘story’ 20 lines or so with the written list. Do not worry about rhyming, or structure- just really try and tap into the emotion of that experience.

Here’s one more exercise you can try. Starting small: Google search the painting by Edward Hopper called Nighthawks and choose one of the characters in the piece. Then set a timer for two minutes and just begin to write that character’s story – don’t worry about the details or whether it makes sense, just try and dive into how that person feels and what brought them to the diner.

Little drips of creativity can turn into big crashing waves, so just start small. Good luck!

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

My favorite thing so far was to experience how loving and supportive people all around me have been... so different from day to day life pre-cancer! My favorite thing so far was to experience how loving and supportive people all around me have been... so different from day to day life pre-cancer!

The following are resources that provide free wigs as well as other items you may find of benefit:

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. The Luminous Breast Cancer Foundation offers custom-made wigs for underserved women at no charge. Contact http://LuminousFoundation.org

I knew I had no choice but to keep going. One day at a time. The hardest part for me was not so much the cancer treatment, but what happened after the chemotherapy and radiation were over. I had emotional problems coping with life after cancer and trying to pick up the pieces and go on.

Therapy, art, music, guided imagery, and exercise have all helped me immensely. When I was actually going through the diagnostic and treatment phases, I kept going by sheer force of will. I just needed to get through it, especially for my husband and children. After my mastectomy, however, the emotional fallout was overwhelming. Luckily, my cancer center offered free oncology therapy, which I committed to on a weekly basis for approximately a year. I don’t know how I could have processed it all without the help of my wonderful therapists. Without their help dealing with cancer’s losses, I never could have eventually recognized cancer’s gifts. It was that therapy, in conjunction with the support of my family and friends, that brought me to a better place of healing.

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 with the above answers. Statistics only tell part of the story. Medicine is a science, but it is also an art, and people overcome insurmountable odds. Feel free to tell him that you don't work well with statistics and that you cannot deal with pessimism.

You can also get a second opinion from a doctor who is hopefully more optimistic. Sometimes hearing another doctor's opinion can be healing to the soul.

you are not a statistic. you have potential. tell him you will bet him $10,000 you will live longer than he predicts and see if he is willing to bet. there is survival behavior read on my web site immune competent personality. doctors are not trained to teach people survival behavior. they do not know how to deal with loss and so predict everything to keep control.

I post depending on how I see the blog. Here’s a little breakdown (cause I am oozing with blogs).

With Bumpyboobs.com (a venting, laughing, sharing – just for me and who ever reads it – space) I post whenever inspiration or ridiculousness hits. However, I do try and write at least twice a week despite not having a specific schedule.

With Facingcancer.ca I post once a week on Wednesday, in some exceptional circumstances (like this week) I might post on Thursday. For me, this schedule is important because this is a support site and the readership might be looking for my post.

Narrativenipple.com is a literary e-zine and therefore gets updated about every 1.5 months with a whole new batch of submissions – though I haven’t hammered out a specific schedule yet.

Basically, frequency of posting depends on the blog’s purpose. If it’s personal and just for pleasure, then post whenever you want and send a note out on twitter if you’d like it shared & people will drop by to read. If you want to blog for any other reason (develop a reputation, become known online, promote yourself or project, etc) then make sure to follow an actual schedule.

In terms of writing – it’s whenever I have time to cram in a post. My brain is at its peak around 11.30 – 3.pm and maybe most creative around 8.00 to 9.00pm, so if I can catch either window of mental power, it’s better for everyone.

Thanks for your question! Do you have a favourite time to write? What about your blogging frequency?
I post depending on how I see the blog. Here’s a little breakdown (cause I am oozing with blogs).

With Bumpyboobs.com (a venting, laughing, sharing – just for me and who ever reads it – space) I post whenever inspiration or ridiculousness hits. However, I do try and write at least twice a week despite not having a specific schedule.

With Facingcancer.ca I post once a week on Wednesday, in some exceptional circumstances (like this week) I might post on Thursday. For me, this schedule is important because this is a support site and the readership might be looking for my post.

Narrativenipple.com is a literary e-zine and therefore gets updated about every 1.5 months with a whole new batch of submissions – though I haven’t hammered out a specific schedule yet.

Basically, frequency of posting depends on the blog’s purpose. If it’s personal and just for pleasure, then post whenever you want and send a note out on twitter if you’d like it shared & people will drop by to read. If you want to blog for any other reason (develop a reputation, become known online, promote yourself or project, etc) then make sure to follow an actual schedule.

In terms of writing – it’s whenever I have time to cram in a post. My brain is at its peak around 11.30 – 3.pm and maybe most creative around 8.00 to 9.00pm, so if I can catch either window of mental power, it’s better for everyone.

Thanks for your question! Do you have a favourite time to write? What about your blogging frequency?

Blogging was a huge assets as I coped with cancer treatment, and now with that all over, it’s still one of my top outlets for creativity and conversation. Here’s a short list of how blogging can help (i.e. ways it helped me)

Connections: A blog is borderless – family and friends from around the world can check on your progress.

Outlet: This is the place you can be far more honest than an in person exchange. People used to see me and say, ‘how are you coping.’ And I’d say fine. But then on my blog I never had any problem talking about the exhaustion, frustration and fear. I think socially we’re programmed to say everything is okay – but blogs don’t work like that. If everything ways always, ‘just fine’ there’d be little to write about in a breast cancer blog.

Courage: Admitting online about an illness is huge. Basically anyone, anywhere can know my story, but because of this I’ve come to embrace my experience and use it as a strength. If someone wants to talk about the cancer, that’s no problem. I don’t shrink from an honest conversation.

Creativity: What a fantastic way to get creative. From the design (it’s like home decorating but free) to the content to the art work – my blog screams: “Catherine was here! And she’s gone nuts with the crayons again.” Drawing and writing combined gave me different perspectives on how I felt, and it was only due to my blog that I was doing either so often.

Community: When first diagnosed I asked about support groups and was told that for a young woman with breast cancer, there really wasn’t a good support group. So instead I looked online (Narrative Nipple, Bumpyboobs, Facing Cancer, Twitter, Talk About Health, Facebook). Often I meet the same survivors again and again, and I love it. There are amazing people online, and blogging is a great way to introduce yourself to the community.

Thanks for the question! Hope I haven’t overwhelmed you with this seriously long answer :)
Blogging was a huge assets as I coped with cancer treatment, and now with that all over, it’s still one of my top outlets for creativity and conversation. Here’s a short list of how blogging can help (i.e. ways it helped me)

Connections: A blog is borderless – family and friends from around the world can check on your progress.

Outlet: This is the place you can be far more honest than an in person exchange. People used to see me and say, ‘how are you coping.’ And I’d say fine. But then on my blog I never had any problem talking about the exhaustion, frustration and fear. I think socially we’re programmed to say everything is okay – but blogs don’t work like that. If everything ways always, ‘just fine’ there’d be little to write about in a breast cancer blog.

Courage: Admitting online about an illness is huge. Basically anyone, anywhere can know my story, but because of this I’ve come to embrace my experience and use it as a strength. If someone wants to talk about the cancer, that’s no problem. I don’t shrink from an honest conversation.

Creativity: What a fantastic way to get creative. From the design (it’s like home decorating but free) to the content to the art work – my blog screams: “Catherine was here! And she’s gone nuts with the crayons again.” Drawing and writing combined gave me different perspectives on how I felt, and it was only due to my blog that I was doing either so often.

Community: When first diagnosed I asked about support groups and was told that for a young woman with breast cancer, there really wasn’t a good support group. So instead I looked online (Narrative Nipple, Bumpyboobs, Facing Cancer, Twitter, Talk About Health, Facebook). Often I meet the same survivors again and again, and I love it. There are amazing people online, and blogging is a great way to introduce yourself to the community.

Thanks for the question! Hope I haven’t overwhelmed you with this seriously long answer :)

This question really resonates. I find we are surrounded by expectations that now that we are out of active treatment (not counting Tamoxifen) we are able to "move on"and that the cancer episode is over.

Firstly I guess we have to validate our own feelings, particularly if we are living without relapse (to date). There is a huge difference between "cured" and "no relapse" - the reality is that no recurrence is not the same as a cure. The difference is probably far more subtle if cancer has not touched your life. I know I can speak from my own pre-cancer lack of knowledge and understanding and would never have seen the difference. We need to be clear in our own minds about the rationale of why we are afraid. We should also acknowledge the emotional and psychological toll of a breast cancer diagnosis and its after effects. It is real and it is valid.

All too often, however, it is hard to convey this message to those around us. And I am sure they fatigue of hearing us talk about cancer. It probably also brings a discomfort; those around us have been confronted with the possibility and fear that we could die when first diagnosed. It is natural to put that to the background where there is no immediacy of active treatment. I can understand and respect that.

So that brings us to the fact that with the breast cancer community we have a space where we can talk openly about our fears, concerns, successes. We can laugh and cry together about what often appears superficial or "too much information" in a non breast cancer context. I remember very detailed discussions about chemo side effects, laughing and agonising about constipation and other chemo induced delights!

A key benefit of remaining part of the breast cancer community is that those in the community "get it" when we vent or share. For example, if we have a worrisome sign then sharing with a fellow breast cancer friend brings responses which both validate our worries and offer wishes for it not to be sinister and unconditional support for us to vent. Similarly, our mixed feelings and emotional exhaustion are understood at times of good results when there is otherwise an expectation for us to be leaping with joy. And what may seem tiny steps forward, our fellow breast cancer friends understand as giant leaps of progress.

A further benefit is that there is a lively and passionate debate about the issues surrounding breast cancer. Look at the variety of blog posts and articles discussing Breast Cancer Awareness Month and commercialisation of the pink ribbon.

So there are considerable benefits and opportunities for us to engage in the breast cancer community. If we want to, that is. It is very much an individual choice about the level of engagement with the breast cancer community. It is also something which can fluctuate over time too, depending on where we are emotionally and physically. They key is that we must respect the choices others make. For instance, a close friend of mine deliberately disengages from breast cancer discussions and activities. She prefers to remain private and finds it unhelpful to have a constant reminder of breast cancer. That is what works for her and I totally respect that.

As a final observation, I think it is important to recognise how much access we have nowadays to support thanks to the internet. Even 5 years ago my breast cancer experience would have been very different, and I believe it would have been much more difficult. I am inordinately thankful for that and for the worldwide support I have. This question really resonates. I find we are surrounded by expectations that now that we are out of active treatment (not counting Tamoxifen) we are able to "move on"and that the cancer episode is over.

Firstly I guess we have to validate our own feelings, particularly if we are living without relapse (to date). There is a huge difference between "cured" and "no relapse" - the reality is that no recurrence is not the same as a cure. The difference is probably far more subtle if cancer has not touched your life. I know I can speak from my own pre-cancer lack of knowledge and understanding and would never have seen the difference. We need to be clear in our own minds about the rationale of why we are afraid. We should also acknowledge the emotional and psychological toll of a breast cancer diagnosis and its after effects. It is real and it is valid.

All too often, however, it is hard to convey this message to those around us. And I am sure they fatigue of hearing us talk about cancer. It probably also brings a discomfort; those around us have been confronted with the possibility and fear that we could die when first diagnosed. It is natural to put that to the background where there is no immediacy of active treatment. I can understand and respect that.

So that brings us to the fact that with the breast cancer community we have a space where we can talk openly about our fears, concerns, successes. We can laugh and cry together about what often appears superficial or "too much information" in a non breast cancer context. I remember very detailed discussions about chemo side effects, laughing and agonising about constipation and other chemo induced delights!

A key benefit of remaining part of the breast cancer community is that those in the community "get it" when we vent or share. For example, if we have a worrisome sign then sharing with a fellow breast cancer friend brings responses which both validate our worries and offer wishes for it not to be sinister and unconditional support for us to vent. Similarly, our mixed feelings and emotional exhaustion are understood at times of good results when there is otherwise an expectation for us to be leaping with joy. And what may seem tiny steps forward, our fellow breast cancer friends understand as giant leaps of progress.

A further benefit is that there is a lively and passionate debate about the issues surrounding breast cancer. Look at the variety of blog posts and articles discussing Breast Cancer Awareness Month and commercialisation of the pink ribbon.

So there are considerable benefits and opportunities for us to engage in the breast cancer community. If we want to, that is. It is very much an individual choice about the level of engagement with the breast cancer community. It is also something which can fluctuate over time too, depending on where we are emotionally and physically. They key is that we must respect the choices others make. For instance, a close friend of mine deliberately disengages from breast cancer discussions and activities. She prefers to remain private and finds it unhelpful to have a constant reminder of breast cancer. That is what works for her and I totally respect that.

As a final observation, I think it is important to recognise how much access we have nowadays to support thanks to the internet. Even 5 years ago my breast cancer experience would have been very different, and I believe it would have been much more difficult. I am inordinately thankful for that and for the worldwide support I have.

This is a critical question. I found that the medical care and treatment were outstanding but that the "soft"side was not so much in place. I connected with 2 other women who had been diagnosed at a similar time and who were also treated in the same hospital. This was invaluable and we are still in contact and now try to ensure that our checks coincide.

To be absolutely honest though, a significant support network was online. I subscribed to two Breast Cancer sites, one UK and one US based. On one site I followed a thread of women who were going through chemotherapy at the same time and although we were at opposite sides of the planet our side effects brought us together. I was able to share highly personal details with a group of women, many of whom I did not know their name!

I also blogged throughout the experience (and still do). This was a great way of communicating what was happening to friends and family far away. However more than this, it enabled me to process everything I was going through. I also find that it has provided a detailed record and document of the experience. It was an important coping strategy.

There were distinct advantages of having my treatment overseas. I was able to continue working, for example. I had virtually no waiting time for treatments and had access to top medical care and facilities. As I mentioned earlier, the gap was on the support and "soft" side and I had to make more effort in this area to find the support I needed.

I have to say that during the whole treatment period I had the support (physical, emotional and practical) of my husband who was at my side throughout.

I think it was probably harder for my family than it was for me being overseas. This is a critical question. I found that the medical care and treatment were outstanding but that the "soft"side was not so much in place. I connected with 2 other women who had been diagnosed at a similar time and who were also treated in the same hospital. This was invaluable and we are still in contact and now try to ensure that our checks coincide.

To be absolutely honest though, a significant support network was online. I subscribed to two Breast Cancer sites, one UK and one US based. On one site I followed a thread of women who were going through chemotherapy at the same time and although we were at opposite sides of the planet our side effects brought us together. I was able to share highly personal details with a group of women, many of whom I did not know their name!

I also blogged throughout the experience (and still do). This was a great way of communicating what was happening to friends and family far away. However more than this, it enabled me to process everything I was going through. I also find that it has provided a detailed record and document of the experience. It was an important coping strategy.

There were distinct advantages of having my treatment overseas. I was able to continue working, for example. I had virtually no waiting time for treatments and had access to top medical care and facilities. As I mentioned earlier, the gap was on the support and "soft" side and I had to make more effort in this area to find the support I needed.

I have to say that during the whole treatment period I had the support (physical, emotional and practical) of my husband who was at my side throughout.

I think it was probably harder for my family than it was for me being overseas.

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.