Recurrence

Life is full of uncertainties and there are no absolutes. Cancer, like any other disease can reoccur, stay gone for the rest of your life, come back in another place. You could be in an auto accident, or be pulled under by the current in the ocean. This is the risk of living.....with breast cancer or not. I tend to think about the positive opportunities each day offers, rather than dwell on the uncertainties. It's a conscious choice. I choose happy and less anxious. Before I answer this fully, I would love for each and every survivor to make a note of this question and answer it as each significant milestones are passed, whether the milestones are related to cancer or not.

Because it is a terrific questions and the answers lie in
1) our distance from treatment;
2) the extent of treatment;
3) if this is our first experience with cancer, whether I am the patient or someone in my family is;
4) if we've lost friends or family members to cancer;
5) understanding cancer itself and the medical system and
6) how each person deals with mortality.

Each and every one of these factors filter the uncertainly that cancer can create. I'm far different now, at fourteen years without cancer, than I was at three, five or even ten years. But I'm different too, because I'm active in the cancer arena and consequently have witnessed much more -too much at times - suffering and loss created by this illness.

These are all complex, life-long issues that happen to be accelerated or amplified when we've been diagnosed with cancer. It's my belief that the younger are at diagnosis the greater the impact cancer can have, from a practical, physical and emotional perspective. I encourage everyone to do the simplest thing - as Yvonne has done - as we do every week on #BCSM: write and talk about your experience. Every time you do you have helped someone else.

Thanks so much,
jms

Melanoma is the 5th most common cancer (other than sqaumous and basal skin cancer) but is only the 12th most common fatal cancer. This is probably due to the massive public education campaign that has been ongoing since the rapid rise in melanoma in the 90's (doubling in incidence since then). Almost all melanomas are caused by UV A/B radiation from the sun (there are rare melanomas such as ocular and mucosal [anal, oral] that account for <2% of all melanomas) and more recently from tanning beds.

Melanoma typically spreads in an orderly fashion from the skin to the regional lymph nodes that drain that skin and then elsewhere in the body. Fortunately, spread to the lymph nodes is unusual with < 20% of patients having lymph node metastasis. Spread elsewhere in the body is even rarer < 12-14% of patients developing systemic spread. Death from melanoma is rare (<10%) if no lymph nodes are involved but survival does decrease if if lymph nodes are involved to ~70% at 5 years and beyond. If the melanoma has spread beyond the skin/lymph nodes, survival decreases further and depends on where it has spread - subcutaneous fat (70%), lung/liver (40%) and brain (10%).

The chance of recurrence/spread is based on the microscopic characteristics of the melanoma. Factors that make it more likely to return are ulceration, increasing thickness, mitoses (number of cells seen dividing under the microscope) >1/millimeter, and vertical growth phase. There are 4 main types of melanoma - nodular, sperficial spreading, acral and lentigo, with nodular and acral (palms of hands/soles of feet) tend to be a little worse but prognosis is really more related to the thickness than the type. Melanoma is the 5th most common cancer (other than sqaumous and basal skin cancer) but is only the 12th most common fatal cancer. This is probably due to the massive public education campaign that has been ongoing since the rapid rise in melanoma in the 90's (doubling in incidence since then). Almost all melanomas are caused by UV A/B radiation from the sun (there are rare melanomas such as ocular and mucosal [anal, oral] that account for <2% of all melanomas) and more recently from tanning beds.

Melanoma typically spreads in an orderly fashion from the skin to the regional lymph nodes that drain that skin and then elsewhere in the body. Fortunately, spread to the lymph nodes is unusual with < 20% of patients having lymph node metastasis. Spread elsewhere in the body is even rarer < 12-14% of patients developing systemic spread. Death from melanoma is rare (<10%) if no lymph nodes are involved but survival does decrease if if lymph nodes are involved to ~70% at 5 years and beyond. If the melanoma has spread beyond the skin/lymph nodes, survival decreases further and depends on where it has spread - subcutaneous fat (70%), lung/liver (40%) and brain (10%).

The chance of recurrence/spread is based on the microscopic characteristics of the melanoma. Factors that make it more likely to return are ulceration, increasing thickness, mitoses (number of cells seen dividing under the microscope) >1/millimeter, and vertical growth phase. There are 4 main types of melanoma - nodular, sperficial spreading, acral and lentigo, with nodular and acral (palms of hands/soles of feet) tend to be a little worse but prognosis is really more related to the thickness than the type.

The answer to this question depends on many things, including the stage of disease. The more advanced the disease that was removed by surgery, the more likely it is to come back. There are several clinical trials in progress that are investigating ways to reduce the chance that melanoma will return once someone is declared N.E.D. It’s difficult to compare melanoma to other cancers in terms of likelihood of disease recurrence. The answer to this question depends on many things, including the stage of disease. The more advanced the disease that was removed by surgery, the more likely it is to come back. There are several clinical trials in progress that are investigating ways to reduce the chance that melanoma will return once someone is declared N.E.D. It’s difficult to compare melanoma to other cancers in terms of likelihood of disease recurrence.

Both my Ovarian and Uterine Cancer were discovered at the same time. The wording on my pathology report is "the endometrial and left ovarian tumors appear to be independent primaries. The cul de sac and right ovary tumors likely represent metastasis from the left ovary" My gyn/oncologist refered to the Ovarian Cancer as primary and the Uterine Cancer as Secondary Primary. I did however have a Breast Cancer scare upon my mammogram almost a year after my Ovarian & Uterine diagnosis. Luckily for me all was fine but in the almost week that it took to find this out that all was OK I can say that I was more emeotional and scared about a possible second cancer diagnosis than when I was diagnosed. Both my Ovarian and Uterine Cancer were discovered at the same time. The wording on my pathology report is "the endometrial and left ovarian tumors appear to be independent primaries. The cul de sac and right ovary tumors likely represent metastasis from the left ovary" My gyn/oncologist refered to the Ovarian Cancer as primary and the Uterine Cancer as Secondary Primary. I did however have a Breast Cancer scare upon my mammogram almost a year after my Ovarian & Uterine diagnosis. Luckily for me all was fine but in the almost week that it took to find this out that all was OK I can say that I was more emeotional and scared about a possible second cancer diagnosis than when I was diagnosed.

Absolutely! great answer...there is no one magic thing to do. Embracing spirituality and support as well as addressing the dietary deficiencies and toxic emotional patterns that are making us sick are incredibly helpful in our quest for wellness.
Please visit my post: Changing the Cancer Environment

http://elynjacobs.wordpress.com/2011/12/09/changing-the-cancer-environment/
I think this is the $64,000 question! I also think that there are some well-established domains in which you can work to optimize your wellness plan. A wellness plan is not only medical; it incorporates all areas of your well-being -- physical, mental, emotional, and spiritual. When I created my wellness plan, and as I continnue to update and refine it, I apply best practices to what works for me relative to nutrition, exercise, emotional support, and faith-based rituals.

The options for such patients have never been greater. They include continuing trastuzumab (Herceptin™) as the chemotherapy is switched, the substitution or addition of lapatinib for or with trastuzumab, and enrollment on clinical trials testing a large and growing number of HER2 directed novel therapies. The options for such patients have never been greater. They include continuing trastuzumab (Herceptin™) as the chemotherapy is switched, the substitution or addition of lapatinib for or with trastuzumab, and enrollment on clinical trials testing a large and growing number of HER2 directed novel therapies.

I'm not sure that fear ever goes away. No matter how far out we get, no matter how many clean scans, it lurks in a closet waiting...

I agree with everything written: make the healthiest choices possible and embrace the moments we have. The only thing I might add is to give yourself permission for the rough days. For me it was often a scan or test that yanked the fears out of the closet and demanded I confront them. It's so very normal to be afraid, and the only way to deal with it sometimes is to walk through it. Remember there was a day when an initial diagnosis was your greatest fear, and you had the strength to manage it, overcome it, and move on. Trust in yourself that while it's okay to be afraid, should you ever need to, you have the inner stregnth to do it again. I am sure I am not alone in saying that my greatest fear is of recurrence. That is a reality we live with post diagnosis.

The way I deal with this is by identifying the factors which are in my control and being proactive in these areas. For example, I know that women who exercise have a statistically lower probability of recurrence. So I ensure that I exercise regularly. I swim daily before work and work out 2 - 3 times a week.

I also ensure that I have a sensible work life balance. While I am happy to work extra hours at times of extra need, I am clear that leisure time is not a luxury, it is critical to my physical and emotional well-being. I also highlight that of course this makes me more productive!

I make a point of doing things in my spare time which I enjoy. This enhances my leisure time but furthermore distracts my mind from fearful thoughts. Meditation also helps to channel my thoughts positively.

Additionally, it is important to be vigilant and educated about signs or symptoms which I should have checked by a Doctor. Connected with this is the reassurance (and inevitable stress) or regular and thorough monitoring checks and scans.

In summary, I believe that this is about taking control over those factors within my control.

hi, my first diagnosis was stage 3 c, my first recurrence was to internal mammary nodes so still stage 3 c, second recurrence was metastatic to liver (stage 4) - because of the nature of Inflammatory Breast cancer we knew recurrence was likely so although we were upset and disappointed we also didnt get a complete shock with it either. After first recurrence they were scanning regualarly every 4-6 months because they were expecting it to come back again and because we knew that too it made it easier in a way when it did happen. We tend to have a 'it is what it is' attitude and try just to make the best of the time I have left - they are going for control not cure. doesnt mean I dont get down sometimes but I'm not going to waste too much time feeling sorry for myself. I actually think its harder for early stage people that have recurrences psychologically because there is a more definitive expectation of complete cure I have had 3 primary breast cancers, so have faced this issue twice. In retrospect, the two most difficult parts of facing my recurrence was 1. the fear of the unknown before I ever had a recurrence and 2. the "PTSD" that got triggered. I had many panic attacks and all that emotional turmoil was unbearable. That was for the 2nd occurrence. Basically, my worst-ever- nightmare had just come true, and I'd been so terrified of it happening that it probably made things harder to deal with. Going through the 2nd occurrence made me see that I could face my worst nightmare and come out ok on the other side.... The hardest thing about the 3rd time was that I'd just started getting my life sort of on track after #2 and felt completely hijacked. I've had to start over from scratch 3 times, and it is not easy. All that disruption, especially when you're young and single and trying to get your career on... not fun. I was dx'd with Stage 1 each time and I imagine women with mets might have a different point of view.

Risk of recurrence will depend in staging (tumor size and presence or absence of nodal metastases).

Your chance of developing a new primary breast cancer has been greatly reduced by having a bilateral mastectomy.

A study by El-Tamer et al Ann Surg Oncol. 2004 Feb;11(2):157-64 found no difference in overall survival and breast-cancer specific survival between BRCA mutation carriers and non-carriers.

Risk of recurrence will depend in staging (tumor size and presence or absence of nodal metastases).

Your chance of developing a new primary breast cancer has been greatly reduced by having a bilateral mastectomy.

A study by El-Tamer et al Ann Surg Oncol. 2004 Feb;11(2):157-64 found no difference in overall survival and breast-cancer specific survival between BRCA mutation carriers and non-carriers.

I was originally diagnosed with IBC in Aug 2008, with breast, axillary and supraclavicular node(above the collarbone) involvement making me a stage 3, my frist recurrence 5 months after initial treatment was in my internal mammary lymph node - a loco-regional recurrence still a stage 3. this year it has gone to my liver as Dr Ueno states above this is considered a distant metastasis there for stage 4. So I would be the exception to the in general rule as my first recurrence was still within stage 3 parameters Yes, in general. When inflammatory breast cancer comes back it usually comes to a location outside of the original area (distant metastasis). All metastasis is consider Stage IV. Whether inflammatory breast cancer metastatic disease behaves differently from non-inflammatory breast cancer behaves differently is controversial. But, there is an intensive research going on to understand the biology of IBC metastasis.

In general, surgery is not indicated for a recurrent inflammatory breast cancer. However, there is always an exception depending on the clinical situation. This case is something that we should not be commenting based on the information provided on the net. I recommend to see a multidisciplinary team with a experience in inflammatory breast cancer. In general, surgery is not indicated for a recurrent inflammatory breast cancer. However, there is always an exception depending on the clinical situation. This case is something that we should not be commenting based on the information provided on the net. I recommend to see a multidisciplinary team with a experience in inflammatory breast cancer.

I suggest you concentrate on the idea of surviving and living rather than the prospects of dying. Do positive things that make you happy, be with positive people and start enjoying life. Try meditation, healing drumming, anything to get your mind off of the negative vs. the positive. Visualize the cancer leaving your body for good and that your body will kill of the cancer cells if they return. Believe it! Believe in yourself and the ability to heal. Also take dietary steps to keep your immune system up and running-avoid sugars if possible, eat more greens, cut out dairy and eat meat only in moderation. Exercise the mind and the body and you will be on the road to healing and living out the rest of your days at peace. I suggest you concentrate on the idea of surviving and living rather than the prospects of dying. Do positive things that make you happy, be with positive people and start enjoying life. Try meditation, healing drumming, anything to get your mind off of the negative vs. the positive. Visualize the cancer leaving your body for good and that your body will kill of the cancer cells if they return. Believe it! Believe in yourself and the ability to heal. Also take dietary steps to keep your immune system up and running-avoid sugars if possible, eat more greens, cut out dairy and eat meat only in moderation. Exercise the mind and the body and you will be on the road to healing and living out the rest of your days at peace.

The following information is from the site Facing Our Risk: http://www.facingourrisk.org/index.php - a national nonprofit organization devoted to hereditary breast and ovarian cancer.

"Women with a BRCA mutation or other hereditary breast cancer who choose breast conservation to treat their breast cancer are at higher risk for another cancer in either breast than women with sporadic breast cancer. Although the exact risk depends on a woman’s age and other factors, one study found that BRCA carriers diagnosed with breast cancer have a 14% chance within ten years of developing the disease in the same breast, and a 37% chance within ten years of developing the disease in the opposite breast. Another study found a 40% chance for BRCA carriers to develop cancer in the opposite breast within ten years of their initial diagnosis. The risk for a second breast cancer among women who develop sporadic cancer is about 10%."


The following information is from the site Facing Our Risk: http://www.facingourrisk.org/index.php - a national nonprofit organization devoted to hereditary breast and ovarian cancer.

"Women with a BRCA mutation or other hereditary breast cancer who choose breast conservation to treat their breast cancer are at higher risk for another cancer in either breast than women with sporadic breast cancer. Although the exact risk depends on a woman’s age and other factors, one study found that BRCA carriers diagnosed with breast cancer have a 14% chance within ten years of developing the disease in the same breast, and a 37% chance within ten years of developing the disease in the opposite breast. Another study found a 40% chance for BRCA carriers to develop cancer in the opposite breast within ten years of their initial diagnosis. The risk for a second breast cancer among women who develop sporadic cancer is about 10%."

If there's one thing that can comes up time and time again for risk reduction in breast cancer survivors it is exercise; moderate, daily exercise. This, most recently on ABC World News Tonight 10/3/11: http://abcnews.go.com/WNT/video/breast-cancer-awareness-hit-gym-14659881

I took up cycling following treatment not necessarily to prevent recurrence, but because exercise in and of itself helped reduce symptoms brought on by treatment, especially tamoxifen. Other helpful strategies: I eat a largely vegetable based diet, little if any red meat; I avoid situations that do nothing but cook up stress for me; and when possible, I laugh long and hard. There's everything to be said for surrounding yourself with loving, open people.

The other caveat I believe all of us understand is that there are certain kinds of breast cancer that are more amenable to these kind of interventions. Mine happened to be one, even though I was diagnosed at a later stage, it was ER/PR positive.

Biologically speaking, there are also breast cancers that are so aggressive no amount of self-propelled activity is going to change the outcome. I don't want any woman with advanced disease to blame herself for not doing enough. We all must do what we can by understanding our cancer and what helps make us tick. Add New AnswerI had always thought I was a pretty healthy person. I was wrong. I was an avid exerciser, likely too intense, and intense exercise can weaken the immune system. I had frequent and lengthy colds, and did not realize something was wrong. I was always a healthy eater, but did not realize that peanut butter is inflammatory, can contain aflatoxins and is supportive to cancer cells. I lived on peanut butter, thought it a better alternative to meat. I ate plenty of vegetables, some of the time, but not enough variety, especially the strong cancer fighters. I had considerable stress in my life. I grew up in a stressful environment, lived in a stressful relationship for many years and a had a stressful job for 23 years. I drank too much alcohol and did not partake in mind-body, stress relieving modalities. Cheese, love it, ate much. Now, I try to relax, eat mostly a plant based diet and consider wine and cheese a treat. I partake in moderate exercise. I have a wonderful husband and two terrific boys. I love life and appreciate all that I have. I still have stress, most of us do, but instead of anger, there is love. For me, for them, love heals.

I don't know if that fear ever totally goes away. I am four years post chemo and almost five years post mastectomy. In the span of a month (recently), I had myself in the internet pine box. Every weird episode and every ache and pain that is in a potential "mets" spot and I still have to talk myself off the ledge. I do believe it's definitely a form of PTSD and although it might get better, a cancer dx changes you and it changes you forever.

I found yoga about a year ago, too. That has helped. Pushing the thought out of your head isn't going to do the trick. At least it doesn't do it for me. I have to process the fear in the moment I am feeling it. Even if I KNOW I'm being completely irrational and illogical, feelings are just that. FEELINGS.. and the worst thing, for me, is to attempt to diminish the feeling. Or ignore it. I found when I do that, the damn thing takes on a life of its own and definitely becomes worse than ever and the fear is suddenly larger than life.

If I can't shake the fear and I realize I'm being a bit over the top, I will do things like blast a "feel good song" .... go grab a glass of water.... walk outside if it's a nice enough day..... sit on the yoga mat and do some gentle stretches.... And, honestly, if I can't get myself recentered, I use the anxiety medication. Fortunately, I don't have to use it frequently but if it's necessary, I will take something.

The fact that you are still experiencing pain isn't helping the situation. The pain in itself is a constant reminder so it's not difficult to just make that mental leap. I think as the pain subsides and it's less "in your face" these frightening feelings will become more manageable and will occur less frequently.

Yes, it does take time and it helps if you have a buddy (one buddy) who can help talk you off the ledge. I have a girlfriend who (last month) said, "you need an MRI" (I swore I had brain mets because of two unexplained falls in a 90 minute period of time). When I told her that I was NOT doing that, she switched gears and calmed me down. (She did monitor my "are you falling" in her own sneaky way for the next several weeks...) ....

Talking helps. I hope you keep reaching out. Coming here and just asking the question is a great step in a good direction.

All the best,
AnneMarie As a speaker, I often talk about the power of fear in our lives. Between my first and second diagnoses, I had a health scare that led me to believe that the cancer had spread and I knew if it had, I was in real trouble. My fear wasn’t dying but leaving my then 14-year-old daughter alone in this world to fend for herself. It was my absolute worst fear and one that, at the time, was too horrific to even wrap my mind around.
With the help of a counselor, I was able to actually face that fear and by doing so, I took away its’ power. You need to ask yourself, what if your cancer does come back? What does that mean for you? What will you do? Are you fearful of dying? Are you fearful of leaving your family? What other things about a second diagnosis scares you? Do you think you are strong enough to fight it? All these questions and a hundred more will surface.
When you have identified your fears, you must look at each one of those and break it down. For example, I was afraid to leave my daughter behind. I had told myself that because I had been a single mom and it had been just the two of us for so long, she wouldn’t make it without me. What I learned by looking at the fear closer and being more realistic about it, was that she had an excellent support system in place. I had a life insurance policy which would get her through college and then some. She still would have a great father and step-mother as well as extended family around to get her through the rough times. She was an outgoing child, so even though she might have to relocate, she would make new friends easily and most importantly, I knew I had already given her the foundation for which she could build the rest of her life. I knew there would be times in her life, during those monumental moments like graduation, marriage, her first child, that she would miss me and wish I were there, but I also understood that she would get through it, like countless others have. When I got to the other side of all the fear, it was clear that she would, indeed, be able to make it without me and there was now a plan in place, i.e. she would move in with her father; her extended family would surround her; and I put a trust together for her care.
Although, the process was the hardest thing I’ve ever done, it was also the most liberating because it taught me that fear isn’t real. The fear lost its’ power and I wasn’t scared anymore.
If you can ask yourself the questions above and answer them pragmatically, without the fear, the same will happen for you. There will be a plan in place and if you have to face cancer again, you will already have a roadmap for how to deal with it in place.
Let’s look at the big one. “What if I get cancer again?” Okay, what is the first thing you will do? My answer would be: Get a second opinion. “What if the second opinion says I have it?” My answer is: Then I will get my support system in place and I will begin to work with my doctor to decide my best option of care. “What if it is worse than before?” My answer is: I am a strong person and I have been through this before, so I know that I must take it one day at a time and do whatever I can to take care of myself the best I can.
This is the process you go through and it is so important to do so, because if you don’t, you could end up making some of your healthcare decisions based on fear instead of what is best for you. I truly believe anything you do out of fear will be the wrong thing.
I hope this has been helpful and I hope that by going through this process you can put your fear behind you. I think you will find that once you have done this, you will feel more empowered than you ever have.

When experiencing fear of a post-treatment recurrence, I tell my friends that the best thing they can do for me is pray and meditate. It's important to find friends who can handle your expression of fear without judgment or emotion. A loved one may be too close to you to listen to those fears without panicking. A volunteer from the American Cancer Society can be an objective source of support, there just to listen and affirm any anxiety. For breast cancer the ACS offers Reach to Recovery volunteers. I've benefited from this program and now volunteer in that capacity. It's normal to have these kinds of fears, and it's probably a good idea to explain to your loved one(s) that this is bound to happen. Explain to them that this is something that is very common for cancer survivors and that with time, the fears will most likely decrease in intensity.

I would recommend that you try not to lean on them too heavily with these fears, however. Rather, consider joining a breast cancer survivor support group to share most of these fears.

If you're consumed by post-treatment recurrence fears and it feels like they are dominating your thoughts, I would recommend talking with someone on your medical team (doctor; oncology social worker; nurse navigator, therapist etc).

A recurrence of the original primary tumor or a new tumor can be devastating psychologically - while many women understand that cancer can come back, no one expects it, just like most don't expect the original diagnosis. Take some deep breaths, and as noted above, face it head-on. Try not to let your emotions and fears get the best of you, and realize that science and treatment advances may mean better and more effective treatment options than were available to you previously. A recurrence of the original primary tumor or a new tumor can be devastating psychologically - while many women understand that cancer can come back, no one expects it, just like most don't expect the original diagnosis. Take some deep breaths, and as noted above, face it head-on. Try not to let your emotions and fears get the best of you, and realize that science and treatment advances may mean better and more effective treatment options than were available to you previously.

that's very interesting and i don't know that particular statistic. this may be true in areas of the country that are less populated and there are less specialist doctors. however, the risk of recurrence depends a lot on margins, and if a margin is positive or close, this will be made clear in the pathology report from surgery. so if a reexcision is needed, that particular surgeon will know. that's very interesting and i don't know that particular statistic. this may be true in areas of the country that are less populated and there are less specialist doctors. however, the risk of recurrence depends a lot on margins, and if a margin is positive or close, this will be made clear in the pathology report from surgery. so if a reexcision is needed, that particular surgeon will know.