Treatment Decisions

NgaiD

Hi all,

I was diagnosed with IDC in April. Tw grade 1 tumours in right breast. 1 2cm and & 1.1cm. ER and PR +. HER2 negative, both slow growing. I chose to have a bilateral mastectomy and axillary clearance. This showed that the margins were clear and I had 4 out of 16 nymph nodes positive grade IIIA which they said was unusual for my non aggressive cancer. When I visited the Oncologist last week they recommended Chemo to me and then Hormone therapy. However she also showed me the websites Adjuvant and Predict that show statistics on treatment options and mortality and reocurrence numbers. She told me that if I had 3 lymph nodes positive instead of 4 they would have recommended Hormone therapy only. Of course this closeness in numbers is quite mind boggling to me and having been given the websites to look at myself I see that there is not a huge difference in reoccurrence and mortality rates if I have Chemo or not.

I decided to take some time out this weekend to think about my choices. I have two close friends who have been through all this with Chemo with more aggressive cancer than mine. Their chemo has had long lasting effects on their health. I also have talked to other women who have sailed through their chemo.

Am I messing with myself and my future over statistics when I should be hitting this with everything in the arsenal or do I go the lesser route and try to make up the other by changing lifestyle. i.e. diet, exercise.

Very confused.

Moderators

Hi NgaiD, and welcome to Breastcancer.org!

We're sorry for the reason you're here, but really glad you found us. Our community is chock-full of incredibly helpful members who are always available for answers, support, and advice. Someone will be by soon to answer your questions! Treatment decisions are hard...we're all here to help you make the best decisions!

Thanks for posting and we hope to hear more from you soon!

--The Mods

Smurfette26

I only had 1 positive node and I had 4 rounds of chemo. (Taxotere and Cytoxin) My disease was multi focal and all 4 tumours were Grade 1. I know chemo is more effective on higher grade cancers.

Did you have an Onco DX test NgaiD? I didn't. They are not so widely used here in Australia as they are not covered by Medicare.

ElaineTherese

I'm not sure Oncotype tests are offered when you have as many as four nodes affected, but for ladies with ER+/PR+/HER2- cancer, the Oncotype test is good at identifying which cancers would best benefit from chemo. You might also want to request Mammaprint test as a way to determine whether or not your cancer would benefit from chemo. Yes, your cancer is slow growing, but that doesn't meant that it can't do as much damage as faster growing varieties. I had an aggressive form of cancer (Grade 3, HER2+), so it wasn't difficult to convince me to do chemo. As for your case, I would hope that your oncologist was relying on more than just the websites Adjuvant and Predict to help her make her recommendation!

ChiSandy

Fascinating how standard protocols differ by geographical location (e.g., OncoDX not usually ordered in Australia or even Canada; mastectomy not covered in Switzerland for stage 1A tumors that can be treated with lumpectomy+rads; chemo automatically given for one node in some places and not given for fewer than 4 nodes in others, etc.)

BTW, IIIA is a stage, not a grade of breast cancer. Your tumors’ grade, as you mentioned earlier, was just 1, which is the slowest-growing. But I think the multifocal nature of your tumors and the positive nodes probably governs the decision of chemo vs. no chemo, regardless of the grade (Nottingham score). Do you know the HER2 status of the tumors? Was an OncotypeDX ordered? That too would have a bearing on chemo vs. no chemo. Incidentally, until quite recently OncotypeDX was never ordered for node-positive cancers because it was assumed chemo would be a given. But now it is often ordered for Luminal A (hormone+/HER2-) tumors with up to 3 positive nodes. Perhaps that’s what your oncologist meant about perhaps not getting chemo with “only” 3 positive nodes.

Hate to muddy the waters, but it’s still your call about what to do, now that you have the comparative statistics from Predict & Adjuvant Online. It would depend on your age, other health considerations, and what side effects (temporary or permanent) you are willing to tolerate to improve survival and get some measure of peace of mind (unfortunately, never a given for either the earliest and most indolent invasive cancers or having thrown “everything in the book” treatment-wise at one’s cancer of any stage). Most women here recovered well from chemo, and it is much easier to get through these days than in the past (in today’s toolbox are steroids, anti-nausea meds, Neulasta or other immune-system boosters to fight infection, Claritin to ease bone pain, popsicles to prevent mouth sores, icing to protect nails, LemonHeads to lessen taste disturbances, even cold-capping to save as much as half the hair on your head).

windingshores

Grade and Oncotype don't always correlate: I had a grade 3 tumor with a highish ki67 but my Oncotype score was 8. Genomic Health told me 30% of grade 3's have low Oncotypes. The reverse is also true: a grade 1 by traditional pathology can have a high risk Oncotype. The test takes into account proliferative factors not covered in usual pathology testing.

The fact that your tumors were pretty small and grade one, but made it to the lymph nodes, would suggest to me (just my personal take) that if you did have an Oncotype, it might be higher than expected, but that is just a guess.

We don't know your age or general health condition. Sometimes being cancer free isn't the only priority, in terms of health. If your health is okay, you might want to try chemo and see how you do. Hormonal treatment is potent but it would seem that your cancer has some determination, so to speak, and so maybe chemo would give you peace of mind once done.

This is only a personal opinion based on my own experiences and don't want you to rely on it, just hope it helps some. Very tough decision.

NgaiD

Thanks everyone for your advice. I have decided to go for chemo as my gut feeling is to throw everything at it now and as I am still fairly young (54) and quite healthy I'll take the next few months off and concentrate on helping myself manage the chemo.

Denise-G

nGAID - I think that is a good decision. Myself, my mom and sister were all diagnosed

within 3 years. Also, I hear from hundreds of women through my blog. In all that time

I NEVER heard where chemo was NOT recommended for 4 nodes.

Sending my best!

Fiddleman

Hi NgaiD and others in this thread.

I'm so glad I found it because I'm dealing with the same kind of decision. I had a right mastectomy (5/31/16) and lymphectomy (6/21/16), 2 tumors in the breast, largest 21 mm, IDC, Stage II B, Luminal B subtype, ER/PR+ HER2- (so Tamoxifen is inevitable), sentinel nodes bypassed but 3 nodes infected further up the chain, with the largest nodal tumor 17mm.The Mammaprint report indicated that chemo would be of benefit and because of my 2 cardiac stents the doc suggested Taxotere with Cytoxin 4 times for 3 months (TCx4). My margins were indeterminable, so radiation is a possibility as well .............. .Oh, did I mention, I'm 69 years old, so I'm no spring chicken, and

……… ..................................................................................................... I'm a man!.

My concern is that Taxotere, especially, seems associated with peripheral neuropathy (PN) both permanent and disabling. I'm a violinist, canoeist, cyclist, model hobbyist and hiker (well at least walker now!) I'm debating if chemo is worth the risk since not playing my fiddle is out of the question.

I also visited Predict and another tool www.LifeMath.net (Adjuvantonline is offline, I wish there were more) and both indicated that I'd be adding about a year or so with Tamoxifen and chemo as opposed to just Tamoxifen alone.

Is it worth the risk of my having possibly to give up my fiddle due to PN? I've read nothing about Taxotere that seems to be good (not Taxol….that's its cousin, but a different beast, and I know there's another thread specifically dedicated to that) and I'm wondering if anyone's had experiences with the TCx4 protocol. I'm talking to my oncologist tomorrow to see if there's a, perhaps less effective chemo, but one that reduces the risk on PN.I'd be willing to make that trade off but am reluctant to forego chemo altogether. I'm thinking of a 2^nd opinion, but if it concurs, I'm still left with the same quandary. I know that there's not enough research on MBC. We're a statistically insignificant population (1/100 BC cases), so we guys rely on extrapolations from research on FBC for guidance. So, anybody have any ideas, comments, suggestions? I'll take all help I can get and from all sources. Thanks.

Smurfette26

I had 4 rounds of TC and have experienced no lasting neuropathy.

I wore frozen mitts on my hands during every Taxotere infusion. I changed mitts halfway through the infusions to ensure they stayed cold. They were provided at my chemo centre. I never experienced any numbness at all in my fingers.

The first 2 infusions I didn't ice my toes and started to get some mild neuropathy. I asked for bags of ice for my toes for the last 2 treatments and it helped immensely.

My last chemo was January 12th and I have regained full feeling in all my toes but only you can decide if it's a risk you are willing to take. Everyone has different experiences. Wishing you well whatever decisions your reach. Donna.

Fiddleman

Thanks, Donna. It's nice to get some positive feedback on this drug. I already have some neuropathy that's controlled with Lyrica. How it happened, who knows,. especially since I'm not diabetic. Don't want things to get worse, hence the hesitation. How cool is it to find friends half way around the world dealing with the same issues. I've been reading a lot about ice therapy during infusions so if I go that route, I'll definitely check into it. Thanks again.

Fiddleman

I just talked with my oncologist nurse practitioner and there is an alternative protocol Cytoxin/Methotextrate/5-Flourouracil evey 3 weeks for 6 cycles. Longer time, a few % points less effective (Gen 1) but no neuropathy at all. With Taxotere there's a 0-30 % chance I'll get it, and she's seen very few cases where it's been an issue; but with the alternative neuropathy is not. So now I'm faced with whether to go longer (6 more weeks of SE's) or take my chances with the 4 cycle protocol. Any advise? Thanks.

Colt45

My wife did very well on chemo. She had heavy duty stuff (including the Red Devil). She iced her fingers and toes with frozen peas. She has no neuropathy and never lost a nail. Many, many women report that they felt much better than they thought they would on chemo. They have great preventatives for nausea, too. My wife never felt nauseous. You can do this.

Fiddleman

Elaine, I agree with you. I had both Mammaprint and Oncogene tests. Based on those results my oncologist strongly suggested chemo. These tests give a pretty clear picture of whether chemo is needed or no. They confirmed that my tumor was high risk for recurrence, so I decided to use CMF (cytoxen/methotextrate/flurouracil for 6 21 day sessions). It's somewhat (2-3%) less effective, but other therapies pose significant dangers of heart damage and/or peripheral neuropathy. I'm obviously a violinist, with 2 cardiac stents, so neither of these slightly more effective therapies were appropriate..

Fiddleman

NgaiD. The stats on those sites don't take into consideration YOUR PARTICULAR tumor. Considering the risk posed by mine (see my post to Elaine above), I opted for chemo (CMF), Tamoxifen (ER/PR+ HER2-) and possible radiation. I hope I'm not too late with this.

Fiddleman

Thanks so much for your response, Marie. I'm so sorry about what Taxotere did to you. As a male with IDC, the universe has not dealt me the best odds . I have decided to go with CMF, to hopefully stack the deck more in my favor. I'm a little concerned about the lengthening of the time my immune system will be comprised and the extra time with a mediport, but these I have at least a modicum of control over. How long have you had the neuropathy? Has it diminished in any way? Best wishes.

Smurfette26

So glad to read you have reached a decision Fiddleman. Wishing you the best. Don't look back. Donna.

Fiddleman

Thanks, Donna. It seemed the right one for me. My wife said she'd have to move to Australia if I couldn't play my music. HA! I've made my decision and am sticking by it since there's no sense in second guessing.

Hey, you never know what'll get ya. If I'd done TC and gotten serious PN only to hit a kangaroo comin' around the corner a year later, well I guess you could that ironic! HA! (fortunately there are no kangaroos in the US, but have you ever seen the size of a bull moose??????). Cheers.

cookiegal

I understand why the line is between 3 and 4. The samples for that many nodes and oncotype are small. I know it seems sort of arbitrary, but the doctors are basing the advice on the numbers and that is how the numbers are broken up.