Double mastecomy and trying to decide whether to do chemo or not

Look at your over all general health and your age. Do you trust in your oncology team?
Yes, with an oncotype score of 27 you are slightly above the normal.
deb23 gave you excellent advice, be pro-active and stay ahead of it.
Everyone is different, but if I were in your shoes, I would do the 4 rounds of chemo.
It won't be a walk in the park, for sure. But as mentioned, perhaps it won't be as bad as you are anticipating.
Often times, the anticipation of a stressful event is worse than the event itself.
Do all you can do to protect your body if you decided to move ahead with chemo. Protect the body and also protect your spirit. So very important!
Wishing you all the best in the decision you make!

4 rounds of Taxotere and Cytoxin. I’m trying to find peace in my decision, but I’m really struggling. The doctor keeps telling me most patients do fine and not to worry.

@briarrose thank you! You’re right, the fear can overwhelm a situation. I have things in place to support my body. Since the original posting I got a second opinion. Turns out the first oncologist gave me info regarding my oncotype score that was not accurate. The chemo will only give me a 5% gain. She also recommended a drug that i was not even eligible to take according to my new oncologist…it was for metastatic BC. So trust right now is a little hard. I do like this new oncologist, though. So many things to think about.

O my goodness! Wonderful you got that 2nd opinion. Those 2nd opinions (or 3rd) are always a good thing in my book. You absolutely must have trust in your team...if any shred of doubt whatsoever, time to seek another opinion or simply change your team!
Yes, you have a new picture to look at now.
Educate yourself, consider all your options.
Do what is right for YOU...and you must have all the CORRECT facts to take under consideration.
All the best to you!

@briarrose thank you!

I had grade 2 IDC. Did lumpectomy. Initially they said only radiation and ai therapy but then also positive oncotype so chemo was discussed. Initially radiologist went over findings because had the appointment scheduled before results came in. She indicated it would give me 17-20% decrease in distant metastasis. Then discussed with oncologist and said about the same. I also struggled with the decision. My brother found an article that indicated the oncotype test was the number 1 reason for unneeded chemo. But this is so rock vs hard place because if I decided against it and then they found mets a couple years later, too late for a redo. I decided to go ahead and had the same - 4 rounds of Taxotere and cytoxan. They never discussed cold caps/gloves/boots (or I just missed it - doing this by myself and it was all a rush it’s possible) so didn’t do any of that. I lost hair but it did grow back, just thinner (but that could be the ai therapy as well). My blood counts have not yet normalized but he said could take 2-3 years. For me, the only long term so far is my mouth. Did get the ulcers and swelling that was a possible side effect and my teeth moved. I had several teeth break, fillings loosened now have chronic periodontal disease that they’re trying to control so cleanings every 3 months. While I think it aged me, nothing else major so would I do it with what I now know? Yes, I think I would because of that decrease in possible mets make me psychologically better.

@mistymar thank you for sharing! I just confirmed I would do chemo. It was a very hard email to write. I have heard of women having dental issues. When you say your teeth moved, did they shift positions? Do you need a retainer to keep them in place? It is unbelievable what this stuff can do. I have intestinal candida and i am worried it will make it worse. My oncologist is fine with me supporting my body with the basic supplements. I am hoping it helps!
I understand the psychological view. One of my docs mentioned that. They did downgrade my tumor to a 1b, but the oncotype score came back as 27, so just over the line. Mine was IMPC (invasive micropapillary carcinoma) grade 3, so there was concern about metastasis. Were you really ill during treatment or just tired and fatigued?

i think is good to ask not only for the short term side effects but also for the long term side effects. My sister is oncologist and she explained me all these effects . When I went to talk with my oncologist he didn’t say much which I think was completely irresponsible . I change doctors obviously and we finally decided not to go with Chemo as my risk of recurrence wasn’t that high and the benefit of chemo was below 1%. The side effects depends of course of the type of chemo. Try to look for second opinions that consider all the factors.

@angiemal thank you! I have had several opinions and most agree chemo to help with reducing the risk of recurrence. However, i try and do my own research and did not see some of the side effects mentioned here.

@waterlilies1899 it was weird with the teeth. It was after the second infusion and I yawned and felt the lower teeth shift. It just changed enough to where one of my lower teeth now hits the back of an upper tooth. I’m sure there’s also a difference to the bite but hasn’t caused any problems so far. Dentist is just keeping an eye on it to make sure it doesn’t damage the upper tooth.
As to how I felt, my infusion was on Thursday and they put the Neulasta thing on which injected me on Friday. (This is where it gets a little tricky - I’ll explain later). First one, started having a lot of pain Saturday evening. Sunday I was really bad - slept all day, started Tylenol -lasted till Tuesday. Oncologist said to start ibuprofen at next infusion and if still problems, would script codeine. Next 2, Sunday was still a bad day, just tired, didn’t feel good, slept a lot but fine by Monday afternoon. I thought the last infusion was going to kill me - actually used the codeine I had left over from surgery for 2 days, still felt bad when I saw oncologist 2 weeks later just couldn’t recover. NOW - don’t panic. The explanation: I had been put on resuvostatin for cholesterol 3 months before all this and had been having problems with it. I stopped it about 4 days before the first infusion (but again, still in my system). Was off it for second and only back on shortly before third. So at 4th, I had been back on it almost 5 weeks. I really think that it either caused it’s own complications or reacted with the chemo to cause my problems. After they sent me to cardiologist who found nothing, I came off the statin and recovered in a couple weeks. So while yes, there were side effects, I really feel the 2 middle ones were representative of my actual side effects and that was 1 day of feeling really crummy and just babying myself and staying in bed. Keep some ibuprofen handy, take the loratidine as recommended (both help with the muscle pain). I never had to use any of the anti vomiting medications they gave me.