chemo or no chemo?

hello honey, I did chemoand rads and decided on mastectomy instead of lumpectomy, and I was planning my wedding at the time of diagnosis, I wanted all that would give me the longest chance for survival of this thing, I am a 19 yr SURVIVOR,(Praise GOD).  msphil(idc,stage2,,0/3 nodes, L mast, chemo and rads and 5 yrs on tamoxifen).

I am Stage IV, and my cancer is widespread. We both have hormone (ER) positive, HER2 neg cancer. My oncologist at Sloan-Kettering has told me that chemo is not the best choice for hormone positive cancer. Anti-hormonal drugs are more effective. And that's what I've been taking. My MO says chemo is "way down the road" for me .... And I'm stage IV!

Deciding to take chemo isn't just a question of whether you think you can handle it. Chemo can cause permanent damage to your heart, or neuropathy. Some studies suggest that chemo, which initially wipes out tumors, can cause the cancer to return, stronger and chemo-resistant. Chemo is a necessary evil some of the time, but not all of the time! The harshest treatment is not necessarily the best treatment. There are many new treatments available for ER+. Chemo isn't a guaranteed cure, but some oncologists present the treatment as the gold standard. Ask your oncologist what percentage of patients (not points, percentages) with Stage 2 cancer undergo chemo and later have a recurrence or metastasis, and how long after chemo did the cancer return.

If the cancer isn't showing up anywhere else in your body, why subject your body to such a harsh systemic treatment? Why not save chemo for later, if the cancer is later found to have spread? And I hope it doesn't.

Wishing you many more birthdays and joyful moments. FWIW, I breezed through radiation with no pain only fatigue. Hope your radiation goes well too.

I'm going to disagree with some. 65 is not young. You also mentioned you had a "mini-stroke" with blindness that resolved. Sounds like you have health issues. I was 52 (not young) when diagnosed & my son was 13. I had no other health issues besides BC. It was because I was "healthy" one MO thought I should have chemo. He thought I would tolerate it better than most. Maybe he thought I could use a few health problems, I don't know. A 6%(the number I was given) decrease in reoccurrence means it will help 6 out of 100.

When I first found out I had BC, I was sure I needed chemo. Then the MO told me I needed to decide if I was willing to put myself thru chemo with all it's side effects. Some of which can be permanent . A 2nd opinion may also be helpful.

It was a hard decision for me to make. You hear from those that sailed thru chemo & are glad they threw the kitchen sink at it. Or like my 62 yr old SIL who blames every ailment she has on the chemo she had almost 20yrs ago. Unfortunately she just had a reoccurrence.

I'll see my son grow up. There are young women(in their 30's) diagnosed with BC who won't get to see their kids grow up. I guess that's my objection to referring those in the 50-60 range as "young".

Those of us who land in the gray zone have a difficult decision to make and we make it with the help of our trusted doctors. I am not selling chemo, but I don't think people should be dissuaded from this therapy because they are "old", or because some may not see the benefit as big enough, or that chemo is scary and needs to be avoided at all costs. When we have a cure for this horrid disease, we won't have to make these difficult decisions.

The oncotype dx test is for hormone positive, early stage breast cancer patients so they and their doctors can determine if there is a benefit adding chemo to their treatment to reduce the liklihood of progessing to stage IV. There would be no reason for the test if every hormone positive patient should skip chemo.

Love to all,

MsP

I have to say that I was dx at 56 with a grade 3 cancer, 3 nodes involved and was recommended chemo.

I was in shock! But I have to say,,,,,,,,,,it was worth it. I'm now over 5 years out and am doing great.

2 new grandsons this year!

Go for it.

it is the hardest decision. Did you go over the Oncotype dx test with your MO? The graphs and charts from that are helpful to understand the benefits of chemo. Also, the web site Cancer Math. Get all the information you need . Mine was only a 2% benefit. What did your MO say was your benefit?

Everybody's treatments are so different . You have to go with the one that feels right to you. I am a MGH/DAna Farber patient and even they have their differences.

Good luck with everything.

I was 63 when diagnosed and went to two top hospitals in NYC for oncology consults - Sloan Kettering and NY Hospital. Both agreed I should have chemo followed by radiation, so that is what I did. I think my oncotest score was 19. We discussed three types of chemo and settled on Taxotere Cytoxan as it was not as harsh as ACT yet lowered my rate of recurrence more than CMF. I realize that my cancer can still come back, but at least I feel I did what was best for me given what we knew about it. Going with just hormone inhibitors was mentioned and dismissed quickly as it wouldn't have improved my odds by much and I wanted to improve them. I am on Arimidex now.

Momat927, I was 63 when I was diagnosed and chemo was very do-able for me. I was terrified when I found out I had to have chemo (i am triple positive) and I never would have guessed I could go through it so well. I definitely had to slow down (which I have incorporated into my life now). I am 4 years out and I feel great. Better than how I felt before treatment.

We are all here for you. I'm so glad you posted.

Liz

Hi Moma.

I bought several wigs and I wear one to work and the others on weekends. I just didn't feel comfortable in scarfs and toppers. I am very sure that people at work know I am wearing a wig, but they don't say anything and that's the way I like it. I want to be private with my illness. I just finished radiation. My hair is growing, but it is going to take many months before I can go without a wig. My family think I look great in my wigs.

I am an executive vice president with a technology company and I have not had any problems with chemo brain or fog. The people who know I have cancer and chemo think i am amazing. LOL.

I had cytoxan and taxotere. Lost my hair right before the second treatment. I had 6 treatments and I did not have a port. My veins took a beating for sure. I had no problems with my nails. Keep your nails short and filed so they don't snag and lift. My dentist was nice enough to squeeze me in for a cleaning before treatment and he made me a floride tray so I could use it during treatment. I lost about 12 pounds during chemo, but some people gain weight. Food will taste weird, so for me, I had trouble finding foods that didn't taste yucky. I exercised every morning. I was able to work from home and did so on several days. I also missed the treatment day because it just took so long...not because I couldn't work. Otherwise I worked thru chemo. And I had absolutely no problems with radiation, I even took a weekend trip to visit family toward the end of radiation.

Everyone is different. Make sure your oncologist knows that you want to maintain your normal schedule. I found my doctor very supportive and she helped me manage my side effects.

There are also chemo threads on this board where women share comfort and support during chemo. I found the support of other women going thru chemo to be very helpful.

Love, MsP

kayb, your advice is excellent, and you know far more than me about chemo. Here's is my point of view on something you said: "Chemo is saved for later in Stage IV patients because it is harsher treatment that can have huge negative effects on QOL" --That truth is just as valid for early stage bc patients. Particularly since the chemo is often at a higher dosage, not at a low, palliative dose. When someone posts a question like momat927 in the forum, the "go for it" responders are usually the people who recently finished chemo and are happy that that they made it through with few problems. Not ladies who had a recurrence several years after chemo, or who chose chemo at Stage I or II but have since been through mets and several cycles of chemo, with no end in sight. Even doctors, when they explain risk/benefits and SEs with a patient considering chemo, can have a skewed perspective, based on their clinical experience. They probably can't answer the question, "How many of your patients who took chemo 5 years ago had their breast cancer return?" or even "What percentage of your patients have permanent neuropathy?" because they don't track the info, patients change practices, etc. It is one of the hardest questions we face, how much treatment is too much? I hope my post comes across as respectful, as I mean for it to be. I don't wish to be contrary. I wish to suggest that the responses posted here are not a broad perspective of experiences, which can be misunderstood by someone at the decision making point. I am one of many who is thankful for your advice and explanations.

I am not a "go for it" responder who is "happy I made it through with few problems". I am not happy at all that I have breast cancer or have had chemo and had I had a low oncotype score, I would have happily skipped chemo because the science supports that. Based on my cancer, my age and my medium range oncotype score, I have something to contribute to this discussion. I made my decision about chemo with my doctor and my family, not from the Internet. And I encourage others to do the same as I have done in this thread. The reason this decision is so difficult is that there are risks of chemo and no guarantee that it prevents distant recurrence and some of us are in the fuzzy middle which makes it even more difficult. There isn't one treatment, surgery, radiation, targeted therapy, anti hormonals that don't have significant risks. We need a cure, it's that simple. And until that happens, we love each other and respect others' experiences and decisions.

MsP

Smart advice from your radiologist, Cindyl.