Anyone Refuse Chemo w/ST 2?

kayson, I think it's great that you've talked to multiple oncs.  Were any of them integrative oncologists?  If I was at the point you are now, I might consider getting an appointment with one to discuss your situation.  http://www.integrativeonc.org/

There are also some world-renown integrative cancer clinics.  If you're anywhere near IL, this one comes to mind:  http://www.blockmd.com/  The benefit of these types of docs is that they're totally committed to CAM, but they also use traditional chemo when they're convinced that its benefits outweigh potential SEs.  Perhaps an onc like this might be able to help you weigh your risk/benefits better than a strictly traditional onc who only has chemo in his/her arsenal.

Karen, have you checked the OncotypeDX results info' in the informational section of BCO?  There's also a thread you may have already seen -- New Oncotype DX Rollcall, where women reported their Oncotype score and their decision re. chemo.  Perhaps one of both of those might help you.

In general (and this is coming from a very health-conscious woman {me} who agreed to chemo only after many weeks of trying to get out of it because I am totally anti-meds), you only get one chance to rid your body of bc -- when it's first dx'd.  If you go lightly with it and it comes back, will you wish you had done more, or will you be okay your decision?   Personally, I am very glad that I relented and did the chemo because I know I would beat myself up mentally and emotionally if it ever came back and I had not.  But it's such a personal decision, and we know our bodies better than anyone.   You just have to be sure that you understand the nature of bc, as well as the risks you may be taking either way.     Deanna

Deanna,

Thanks for your message. I guess I could say you have made me realize I only have one chance at this, I get it right this time or who knows what will happen. I hate the idea of chemo, but I will do what I need to do to get rid of this bc.

Karen

I had neo-adjuvant dose dense AC chemo.(Stage 3). I had ER PR + and HER2 -, what they thought was a 9cm ILC tumor. The team thought that I had a 1 to 3 % chance that chemo would have any effect. Thought it might be worth a try to shrink it because it appeared very close to the chest wall. The Oncologist felt additional neo-adjuvant taxol was too much risk for the possible benefits.Pathology post surgery showed that chemo had no effect, I had 7 of 22 positive nodes with extracapsular extension, and tumor was 10 plus cm. The PET done post chemo and surgery showed no visible mets. The surgeon seemed surprised....I was started on tamox right after surgery and I had 25 rads with no boosts and was prescribed tamox for at least 2 to 3 years and then possible switch to AI of some type. I was 50 at diagnosis and not in menopause. I am 1 year out and ok so far. No further chemo was offered after surgery. Ooph was not suggested. Chemo put me into menopause. I was treated at Mayo Rochester. The surgeon thought may be two years before it returned before he saw the PET results. The Rads Dr. said she thought I had ten years before I would see it again, most likely in the bone, that was after the PET. I feel like I did everything that I could do.

Just wanted to offer some info I've come across, and share my experience. Boy, I didn't want to do chemo.  I was trying anything--including seeking a third opinion, to try and wiggle out. Ultimately, I went with it, because the doctor helped me understand that if it comes back, it's fatal.  I have a low chance of return by Oncotype score, but the Tailor X results are not in yet, and until they are, playing around with a borderline "low" score seemed unwise.  Especially given my age.

None of that applies to you, but I did want to mention the argument that chemo and radiaton cause cancers.  Of course they can.  But they do in a very, very small number of cases.  At 3 positive nodes, your chances of it coming back without treatment in all likelihood FAR outweigh the risks of chemo.

This is just an anecdote, but a sobering one.  A friend had 3 positive nodes, and went all holistic. It's back.  Forgoing radiation in her case was just unwise.  Radiation cuts risk of local recurrence by up to 40%--that's huge.  

I am doing just fine on TC 4 rounds.  The Neulasta makes me sick, but honestly, besides the hair loss, I wouldn't know I'm doing it once I bounce back.  My skin is better than ever, and all other functions have held up 100%.  With sound nutrition, good guidance, and careful care, it is the best option in today's world--naturopathic or allopathic--to rid yourself of cancer.

Actually, all the chemo drugs are listed as carcinogenic.  The risk is in the process of being recalculated now that more and more younger people are getting chemo, since most of the research is on patients who were 50 or 60+ years old, and the cancers don't typically show up for 20 to 30 years.  Haven't been that many 30 year survivors to date to base studies on.  Most of the info comes from children treated for childhood cancers with chemo. 

Most of the research I've seen has, in the "discussion" section, a statement that the effectiveness of various treatment protocols is questionable for early stage (stage 1 and 2) breast cancer.  For me the risk of permanent nerve and other damage from the chemo wasn't worth the potential benefits, so I refused chemo.  Of course, I emmediately started being treated differently, less carefully, less humanely, since I was not a "compliant" patient.  Also, not taking chemo means you are not eligible for a lot of financial and other assistance programs.  

There is also research showing that throwing everything at an early cancer makes it much harder to treat later if it does come back, as it comes back resistent to anything that's already been used.  

Chemotherapy has benefits to some women, but not others.  Right now the research is mostly based on late stage bc (stages 3 & 4), so those of us with early stage bc have to make hard decisions without  difiniteve info that applies to us.  It's a hard choice to make. 

For myself, I refused chemo, did radiaiton (big mistake, was the cause of much pain and eventually a mastectomy) and hormone therapy.  But that 's what was right fo rme, an may not be right for anyone else.  

Right from the start, I had a BIG visceral belief that Chemo would only do me harm. I found a St.2a/ 2.6 cm/ Lobular/ ER & PR + HER2 -/ 0/2 SNB/ had mast because a lumpectomy would have taken many many hours to cut away given how Lobular grows, and even if all clear margins, would have left a 1/4 sized gap in breast. The vessels were also neg. I had already decided on no chemo prior to the Oncotyping, which was 18. I was not told about this test by my Onc., and when I demanded it, was told it was very expensive..... i had already checked that my insurance covered it in full. hmmm.

The Oncotype lab calls <18 low, but MSK, for purposes of their Tailor trial calls <11 low/ 25% of results/18 in the middle of their study group/55% of results, and >25 high-20% of people taking the Oncotype test. These 20% "high" numbers are the only ones for whom they rec. ACT chemo, the 25% 11 and under they rec. only TAM; the 55% mid range group they are randomizing into CMF followed by TAM, or TAM only. The point is to see if CMF helps at all, as ACT does not for this group.

I "randomized" myself into TAM only, and have been on it for 2 years. I'm considering plant derived estriol/ progesterone, and some extra iodine.I started to read up more serious CAM when I saw all the negative press paid for by Big Pharma.....

I also take selenium, a multi with extra high B's & C, melatonin- I go up 3mg every few weeks- am now on 24 mg- there is no limit- you leave the dose at that which does not make you sleepy in am, or have abnormal dreams, also take 2 Calcium + D, and an extra 400 of D, Flaxseed oil for omega 3/6/9, magnesium to balance the Calcium, a certain pine bark powder..I also make better food choices- which doesn't mean I've sworn off all dairy or meat which we know is loaded with hormones (the wrong kind), and antibiotics..but I eat much more fruit, veggies, grains, nuts, good oils, all kinds of herbs for flavor and micronutrients, and lots of water. I exercise irregularly (don't really have a routine) but am very fit for 54 and have a top nml BMI, so everyone says I'm too thin.

For someone like me, with negative nodes and vessels I'd say definitely get an Oncotype test before chemo decision. Even if I had to come up with $3500. for it, it's worth not doing chemo, if the risk numbers are with you. Also- chuck adjuvant on line as a risk analysis- the lifemath.net has been proven (mathematically) to be superior. Now that I'm 2 yrs out, my stats are even improving

In conclusion: Before the Oncotype results, MSK pushed ACT on me, or at least CMF and threw all the relative risk numbers around like used car salespeople... After the 18, I was "offerred" the random tx with the less toxic chemo or TAM alone in the Tailor trial.

I also worked out with wts/ my son's perfect pull up bar to get all my movement and strength back, 6 mos before that Big study reversed what Everyone knew about no wt. lifting.You gotta take it all with a shaker of salt. Reject tx based on your review of the literature (and don't just read the abstracts). Listen to your intuition screaming at you. good luck & God bless.