No Treatment or Choosing Only Specific Components of a Plan?

If you're HER2+, you probably won't be getting BOTH neoadjuvant chemo and adjuvant chemo. You'd be getting neoadjuvant chemo + targeted therapies (Perjeta + Herceptin) and then, after your operation and radiation, you'd be getting Herceptin for the rest of the year. Herceptin is NOT chemo, and for me, it didn't have any side effects. With your various conditions, your physicians would have to monitor your heart very closely so you could safely take Herceptin.

Would skipping a part of this treatment plan be advisable? I would have to say, no. Grade 3 HER2+ cancer is very aggressive, and it used to produce some of the worst outcomes. With targeted therapies like Herceptin, outcomes have greatly improved. You could just get the operation, and that would reduce the most risk for recurrence.

Best wishes!

I want to second the experience with Herceptin. For me it is NOT an issue. I drink a lot of water for infusion and not had problems. Worst SE I have heard about from people at my cancer clinic getting it is runny nose. They monitor the heart to make sure it can be given and to ensure it is not damaged. For myself, I got through the first two chemo drugs (adrimycin, cyclophosphamide) pretty easy. Mostly digestive issues related to heartburn and got a drug for those. Could not finish all of my Taxol portion due to breathing problems. I had 11 out of 16 chemo total and did radiation. Radiation was fine, peeling but not hard at all.

What it boils down to is this. We can share our experiences and it is good to see how other people do. My own personal recommendation with the Her2+ Grade 3 is throw as much as you can. I was able to work for most of the time though on some reduced hours. I took a few weeks off when I was sick from the 2nd chemo but my reaction is not to be considered typical. I could not work during radiation either because at my cancer clinic, appoints were all over the place timewise and usually changed the day before too so I took that time off to make it easier. Most side effects SE can be managed while being treated, tell doctors right away. Pain can also be managed too. My own feeling is that though I could not get all chemos in, most were done and with the radiation and Herceptin for a year, I have put as much armour between me and a recurrence as possible.

Good luck on what you decide. Ultimately, it is up to you but I do believe treatment is doable. The MO will check you out before prescribing all the chemo. You also have to make sure you are OK with the decision as well. This is an aggressive cancer but on the other hand, advances in drugs that can be used to treat HER2+ have greatly improved our odds.

VLH,

I know that you have had many health challenges, but you are welcome to visit the Stage IV boards to get an idea of life with advanced cancer. That comes with many challenges as well. By the way, if you were Stage IV, (not to wish this on anyone), you would automatically qualify for Social Security Disability and later Medicare.

Tough choices. I was "healthy" when diagnosed with 20%ER, PR-, HER2+++ breast cancer a year and a half ago. I opted for a double mastectomy and no further treatment. Tumor was 4cm, sentinel node (1) was negative, no LVI. I was 55 at diagnosis, kid grown. I am currently not in a relationship, and have a large, close family so I knew my daughter would have lots of loved ones and decided to forgo the chemo/Herceptin regimen routinely recommended (radiation was not recommended for me). If younger or still responsible for the care and feeding of a child or other family members, my choice may have been different, but at this point in life I did not want to get on the treatment treadmill. I had one PET a few months post surgery which did not show any obvious cancer activity, and will have a brain CT with contrast next month to see how that looks since brain mets are more common with HER2 disease. It's a really individual choice. For me, I worried about doing the intense chemo recommended and recurring anyway, and "losing" a year or more to side effects (though these boards will show they are very variable and most people do fine, others have issues.) I'd rather have a good non-medical year or two. I know that I am an outlier in that respect, and I respect the choice of the great majority of similar patients to get the standard of care treatment. I simply never felt at peace with it. I like reading these boards for both the personal connection to others in a similar situation, and the incredible wealth of info on treatment, work, the social aspects of dealing with cancer and more. Good luck with your decision.

Thanks, Victoria. I am not too stressed about the test. The beauty of a lousy diagnosis (once you have gone through the initial insanity of it all) is not getting too shaken up by what follows. You've usually had a few months to marinate in the worst case scenarios and come to a strange sort of equilibrium about it all eventually. I can't speak to chemo side effects, but there are plenty of threads here that can give you a realistic view of what to expect. The supportive anti nausea and anti diarrhea meds are better now, but the HER2+ chemo protocol is relatively tough. As to the targeted therapy, Perjeta in particular is known for diarrhea, so that is a concern with existing IBS (though of course not insurmountable.) Also, I found it helpful to ask about the absolute rather than relative benefit of the therapies offered. There is a lot of debate on the boards about it, and I get that the relative stats are helpful when comparing one chemo to another, but sometimes the overall absolute benefit gets lost in the conversation; e.g. by what (absolute) percentage does this therapy improve my chances of survival for five years? Some people will do any drug that confers any possible benefit, but to me, at this stage in life, quality of life is paramount. Also ask what your statistical chances are with surgery alone. And if you don't get answers, get a second or third opinion. Docs are not accustomed to patients who are open to not doing the standard of care, so you may have to push for answers. Be candid about your existing physical challenges and emphasize your desire to maintain quality of life. Also, some oncologists will agree to do Herceptin without chemo assuming that your insurance approves it (much more common in Europe than here, though pretty routinely approved here for HER2+ patients who cannot tolerate chemo drugs.) Most people have fairly mild side effects from it, though although heart monitoring is required since it is cardio toxic. Best wishes to you!

There is so much to learn. One thing to know is that grade three tumors, while faster growing, respond better to chemo than grade one. Also, if you Google HER2+ your going to find a lot of outdated facts that include "worse prognosis". Herceptin and projeta have been game changers. Many stage IV patients go into remission for 10 or more years with minimal side effects from these drugs.

With a small, early stage, node negative HER2+ cancer your likeliness of being cured may be over 95% if you could tolerate chemo. With mx alone, maybe 70%. I'm going by the stats given to me, your stats may be different.

It's a lot to digest and you don't really get much time to weigh out your decisions. Good luck.

A 10% to 16% difference in overall survival is meaningful, but was not compelling enough to make the case for chemo for me (stats i was quoted were about the same.) Good luck with your decision.

Also wanted to say that I think it's crappy for oncs to refuse to follow non-chemo patients.They and ROs are the best qualified to interpret any scans you may get in the future and advise on treatment that you might be open to if the need ever arises. Most primary care docs really can't do that well. Any patient refusal of recommended treatment can be documented to protect the oncs/ROs. It would also help with the stat desert on chemo vs. non-chemo recurrence rates for early stagers.

VLH - Just something to think about, but I had some autoimmune issues with chronic fatigue before being diagnosed with cancer. The fatigue was so bad that I couldn't work out of the home in a full time capacity, but immediately upon my surgery my fatigue was significantly better. I don't know if your fibromyalgia comes with the fatigue component or not, but treating the cancer could actually make your current state better (as weird as that sounds). I now have little to no fatigue after chemo & being on an AI, and I am back to working full time.

So glad you have decided on a treatment plan VLH. Try not to look back now, only forward.

I wish you well on your journey. Hugs Donna.

I am so happy to see this discussion. I'm 61 and I too have had a very serious autoimmune disease ( reactive arthritis) since I was 25. I also have thalysemia anemia and inactive thyroid. I've had a spinal fusion and my lumpectomy was my 12 surgery. It takes a delicate balance to keep me feeling well. I do not recover easily from any illness. I, personally think quality of life is more important than quantity. I am reluctantly starting the radiation but am pretty sure it's a no for the hormone therapy. When the side effects are joint pain and uterine cancer, I'm like, you are kidding. I appreciate everyone's position immensely!