Cytoxan Taxotere Chemo Ladies- February/March 2013

Hi Suzanne, pleased to 'meet' you but sorry it's under these circumstances. I had a mastectomy and ALND, 1 of 11 nodes taken was positive. I had a referral from my medical oncologist to a radiology oncologist, even though she presumed there would be no need for rads. My BS also didn't think rads would be required. The radiology oncologist explained why he was sure it wasn't necessary very well and I was quite happy after meeting with him, so I would also recommend you ask for a referral if only for your own piece of mind. In my case he told me that there were good clear margins around the cancer in my breast and the small cancer in my lymph node was fully encapsulated and removed at surgery. 2 sentinel nodes were taken when I had the MX with one positive. I later had ALND and another 9 were taken, all negative. His opinion was that the surgery likely took care of the cancer, and the chemo I had scheduled was bonus insurance.

Good luck, and let us know how you are doing. These people on the boards are a great source of information and support.

I was told by the RO that I was in the gray zone... anything 4 nodes and over should get radiation. 1-3 is gray area... after going over my pathology she said she was not recommending that I needed to have the radiation. The reason being my margins were great... it had only gone to 1 node, had 16 others removed which were negative.. she said it would only reduce the chance of local recurrence by a very small percentage. She told me I could have it if it was something that I wanted and needed to be able to sleep at not, but she was not recommending that I needed to have. So I made the decision to opt out... hoping I made the right decision... Its so hard when they won't just tell you what you should have... either yes you need or no you don't. I encountered the same thing with Chemo...which regimen did I want.. I was told you can do AC/T or T/C... good luck with your decision!!

Hi Suzanne, I'll weigh in on this, too. In 2013 I had a bilateral mastectomy (cancer in both breasts) and was told by my medical oncologist that radiation wasn't needed because I had a mastectomy (no lymph node involvement at the time). I never was referred to a radiation oncologist. What went wrong for me is that I didn't have clear margins on the left breast so I had to have an additional surgery one week after the mastectomy and they said they got it all. Here I am 2 years later with a recurrence in the same area where they had to go back in to get the clear margins. My new surgeon's theory is that they didn't get it all the first time around. Now it is in my lymph nodes, too. I've had to have a lumpectomy, chemo, and I'll be starting radiation in a week. My thought - do whatever is necessary to avoid it coming back. You don't want to be back on these boards in a few years!

bbpie, others here have asked me if I hit the gong at the chemo clinic, but I learned it had been moved to the radiology department on another floor. I think it was for the same reason, consideration of others who were terminal. There is another women on the same regime as me and same timing so she was done on Thursday too. I've talked to her every chemo day and we keep in touch in between too. I had thought of getting a couple of balloons to take to celebrate but when I was there for chemo #3, the man in the bed next to me said he'd be there every month until it took him.... so I decided to celebrate quietly and as inconspicuously as possible.

Suzanne - I had a double mastectomy w/clear margins and two clear serial nodes on each side. Like klanders, I was told I didn't need anything else, rads or chemo. This was DCIS, which the powers that be don't even want to call "real" cancer anymore. 2 years later the cancer came back in a lypmh node under my collar bone. This was 4 months after a totally clear MRI. The second time I did neo-adjuvent chemo, ALND surgery, chemo after surgery w/different drugs since the first chemo didn't provide a pCR, and last but not least, radiation for 4 weeks. Sure hope it's gone, but I am now a believer that it's only gone at the present time, and there are no guarantees.

Note - I'm HER2+ and ER/PR negative, so there are no 5 or 10 year continuation drugs for me. That may make a difference in the doc's recommendation since most of you seem to be hormone positive and HER2 negative.

Thank you MinusTwo for sharing your story and I am so sorry that you also had a recurrence. It is scary enough to go through this once but twice! I think I would rather have the radiation and be on the safe side, then skip it. I hope you are done with it once and for all!

Thunder, Go to the May Chemo thread and read from the beginning. You need to be prepared. It is NOT a walk in the park

Thunder - below is the link w/a full barrel of tips & tricks. I too am concerned about the fasting. Many of the SE's of chemo make you very weak, and I would think fasting would make that worse.

https://community.breastcancer.org/forum/69/topic/...

Mysunshine4 thanks for the idea, looked over there lots of good info.

CatsRus and Minustwo, thank you for your concern regarding the fasting. I have done much research on the work of Dr. Valter Longo with USC on the subject. My oncologist smiled when I told him I wanted to follow this protocol. It turns out this fall he will be doing a clinical trial on fasting. So he felt very comfortable with my doing it now. The human trials so far show much reduced SE (no or little fatigue, no chemo brain, no or little GI symptoms), and after the 24 hr. wait for refeeding, the immune system immediately rebounds. (the 60 hrs. was my choice, it is a breeze from me to fast if I don't eat after waking up.) The added bonus to the fasting is the healthy cells go into a protective mode and the cancer cells weaken because they do not have the glucose to feed them. Making the cancer cells more susceptible to the chemo.

Minustwo, also thanks for the link.

PoppyK, thanks for the tips! I will definitely stay hydrated. Right now water is my friend :-)

Thank you all!

Thunder7

No, chemo wasn't recommended for me first time around because oncotype scores were low - I think 9 and 14 or something like that. So first time it was bilateral mastectomy/reconstruction and then I foolishly gave up tamoxifen after a few weeks because my side effects were awful. I wish they had suggested other alternatives for me or that they hadn't let me give up on it so easily.

Got bad news yesterday. The doc who read my PET scan in February missed two active areas of cancer in lymph nodes under pectoral muscle and mammary area. My radiation oncologist caught it and sent me for another PET scan and those two areas of cancer are still alive and well - seemingly unaffected by the chemo. That's on left side. She wants me to have a biopsy of two suspicious areas now on the right breast lymph node area.

The nightmare continues. But don't let this be a discouragement to all you first timers. The recurrence rates are low. I'm just the lucky one who tried to do supplements instead of tamoxifen. The doctors have made mistakes - but so have I.

Congratulations Cats and Mysunshine! Can't wait to be in your shoes. Have my 3rd (and 2nd to last on Monday). Counting down.

Welcome Suzanne, I'm about 2 months ahead of you if you have any questions am happy to help where I can. (I haven't yet heard if I'm getting radiation so can't help there).

xoxo to all the sistas!!

You can do this Cats! Look how far you've come! I don't know what Letrozole is, will research that. I wish learning all of these multi-syllabic words helped my vocabulary!

catsrus: hope you are feeling better in a couple days. Have my 2nd TC treatment next Thursday. I am hoping my SEs are minimal like the first time. Never know though. Take care

CatsRus, Me too. Very tired, no energy. I am having trouble drinking all the water I should....trying. Going in tomorrow for bloodwork and fluids. One day at a time.

saw another MO today who suggested TC but I've read horror stories of permanent hair loss up to 6% of the time ... Is this for real