IDC. Alternative therapies?

Mooshi

I've just been diagnosed with Invasive Ductal Carcinoma. Unofficially, they think it is still Stage 1, but they won't know until the lumpectomy, after they've tested the lymph nodes.

Generally I'm pretty anti-chemo, so ihave been researching alternatives. If it is Stage 1, then I won't have to worry, since chemo is not required. But if it is Stage 2, then it is possible that they will prescribe chemo.

My question is, are there any of you that chose to forego traditional radiation and chemo treatments in favour of alternative therapies? Would love to hear your experiences.

BG46TN

HI Mooshi....sorry you have to go through this, but its a great group of women here to help you out! I did not do an alternative treatments, but I was wondering if you know what your receptors are yet? That could change your treatment options also..

I am stage 2, triple negative, so chemo is really my only option to beat this....

Good luck! I"m sure some women will be along to give you some great advice...also I know there is a forum here for alternative treatments.

MTwoman

Mooshi, I'm not sure where you got the idea that "If it is Stage 1, then I won't have to worry, since chemo is not required", but that's not really accurate. First, "required" is an odd term, as we have to consent to all of our treatment, and you can certainly always decline whatever you want - so nothing is required. But Chemo is not considered for Stage O, but after that, it is all about your personal risk. There will be your pathology, which will give you the bc characteristics (er/pr/her2/ki67 etc), as well as the grade (1,2,3) and whether there are any cells found in lymph nodes, in addition to any family history (and/or genetic testing results). They may run a bone scan, mri or additional testing to search for other stray circulating cells. I have read quite a bit from women on these forums getting a test called the Mammoprint (or other similar) that actually gives you a score that is supposed to be a good guide for whether the risks of chemo outweigh the benefits. If the score is below and certain threshold, then chemo is not recommended; if the score is in the middle it is discussed; if it is above a certain threshold is it recommended. Maybe reading through some threads on the "chemo - before during and after"? So sorry about your diagnosis.

Pamela23

Hi Mooshi--I was Dx with Stage 1, only 3mm no lymph node involvement. Unfortunately, it was grade 3 which means it was really aggressive. Because my ki67 was high (marker for cell proliferation), I was asked if I;d like to do the Oncotype Dx test which would give me a score to let me know my chances of distant recurrence (somewhere besides the breast since there are blood vessels surrounding the breast tissue it can spread even if lymph nodes aren't involved) and the test will also tell you if your BC will respond well to chemo. Well my score came back in the upper moderate range with an 18% chance recurrence rate. I could decrease that by 30% w/ 4 rounds of chemo which I did. Believe me, I did NOT want to do chemo. I researched over & over and went to a major hospital in Chicago for a 2nd opinion. By that time I knew it would be the best thing for me to beat my chances of recurrence. I used a cold cap to keep 70% of my hair. My point is--knowledge is power. Make sure you have all the information to make that decision because in the end, it really is YOUR decision! Good luck and keep us posted! There are some great forums here for support.

NotVeryBrave

I can't speak to alternative therapies, but I do know that radiation of some type is required after lumpectomy. It reduces the local recurrence rate from 40% to less than 10% over 10 years time.

More specific information about your cancer will help guide your decisions about the need for future treatments and how much benefit they would give you.

Mooshi

Thank you so much for all that info and for sharing your experiences.

I do not yet know the ER/PR/HER2 status yet. Pathology report on that will take another 2 weeks minimum. Regarding treatment, I do understand that any treatment is "optional." I'm coming from the standpoint that the medical staff will talk to me as though it is required.

There is no indication of chest wall or skin invasion, and lymph nodes look and feel normal. The only test that they talked about was removing the lymph nodes during the lumpectomy, and also testing the margins. There was no talk about doing any bone scans, etc.

Is it true that even in Stage 1, chemo is still "required" if it is triple negative? Is that correct?

When I met with my surgeon, she mentioned that they would only recommend chemo at stage 2.

I have heard about these tests that measure the efficacy of chemo, as well as chances of recurrence. Not sure what they would be called here in Canada, but certainly worth looking into.

I remember reading my grade and architectural grade on my report... I think they were both 2/3? I'll have to double check when I get home. Is that good-ish? Bad-ish?

Thanks all!

MTwoman

So, here in the US, it is now common for chemo to be done in advance of surgery for triple negative (TN) bc (this is called neo-adjuvant chemo), as there are no endocrine therapies for after radiation (like Tamoxifen or an AI) or something specific for HER2 (like Herceptin) that could be given in addition to traditional chemo, and traditional chemo may not always be as effective. So they give it in advance and can see how it effects the tumor. Here is a link if you want to read more about that:

https://academic.oup.com/annonc/article/23/suppl_6/vi35/173428/Neoadjuvant-treatments-for-triple-negative-breast

Now, Canadian treatment protocols could be different, so please confirm everything with your team there. Here, the final staging of bc is not done until after the lx/mx and SNB (sentinel node biopsy) as you can't always "feel" if there are cells in nodes and sometimes the cells in the tissue removed during lx/mx surgery differs from the cells removed during biopsy.

This is what Johns Hopkins has to say about grade of bc:

"The grade of a breast cancer is representative of the "aggressive potential" of the tumor; in a broad generalization, "low grade" cancers tend to be less aggressive than "high grade" cancers. Determining the grade is thus very important, and the clinicians use this information to help guide the treatment options for patients.

There are different "scoring systems" available for determining the grade of a breast cancer. One of these systems is the Nottingham Histologic Score system (the Elston-Ellis modification of Scarff-Bloom-Richardson grading system). In this scoring system, there are three factors that the pathologists take into consideration:

1. the amount of gland formation ("differentiation" or how well the tumor cells try to recreate normal glands)
2. the nuclear features ("pleomorphism" or how "ugly" the tumor cells look)
3. the mitotic activity (how much the tumor cells are dividing)

Each of these features is scored from 1-3, and then each score is added to give a final total score ranging from 3-9. The final total score is used to determine the grade in the following way:

1. Grade 1 tumors have a score of 3-5
2. Grade 2 tumors have a score of 6-7
3. Grade 3 tumors have a score of 8-9"

to read more follow this link:http://pathology.jhu.edu/breast/grade.php

Therefore, 1 is the least, 2 is moderate, and 3 is the most aggressive. HER2 amplification (HER2 positivity) is a prognostic biomarker and carries with it a higher risk of recurrence.

Once you have the specifics about your bc, you can make a good plan with your team.

MTwoman

oh, and surgeon's are not the best ones to talk about the risks/benefits of chemo. You'll want an MO (medical oncologist) who specializes in this aspect of your treatment. She/he will be able to talk to you more about your specific risk and how that can be reduced with chemo and what the risks of treatment are. Your surgeon is all about removing the bc cells, your BS (breast surgeon) and/or PS (plastic surgeon) will be in charge of your 'remodel' and your RO will be in charge of radiation. Having a consult with your MO before you go in for surgery is a good idea here in the US. Again, not sure how that works there. Sorry!

NancyHB

Mooshi,

For those dx'd with triple negative, chemo is the only systemic treatment available, as Tamoxifen and AIs aren't an option, so it is usually indicated for anyone with TNBC and a tumor > 5mm. If your MO determines you're Stage I with three or fewer lymph nodes involved, you could ask for the Oncotype DX or Mammaprint. tests. These tests are based on your specific tumor and provide an indepth analysis of the efficacy of (and need for) chemo. Even some with Stage 2 have avoided chemo based on these tests.

And any treatment offered is yours to choose or refuse. The first time I was dx'd I fully expected my oncologist to tell me what to do; instead, he offered me choices and I made decisions based on what was best for me after researching my options. WIth a high Oncotype score (42) I didn't want to risk not doing chemo, so I did. I had a local recurrence last year that was TN, so I did chemo again. It's tough, but doable. We can only do what we feel is best. If you feel your doctor is telling you you "must" do treatment, or bullying you into something you don't want to do - look for another doctor.

Good luck.

Mooshi

To date, I have only met my surgeon. I don't think I'll be meeting my oncologist until the rest of my pathology report comes back in a couple of weeks. I still have no idea who else is involved, and I'm also a bit shady on who does what, so that is very helpful info! Good point about not asking my surgeon about treatment options - that is clearly not her expertise. I will save those questions for my MO.

In any case, I have since found a great referral for a naturopathic doctor who specializes in integrative cancer care. I'm sure I'll be able to ask him some honest questions about what I can reasonably expect to achieve with alternative and conventional treatment options.

MTwoman

Oh Mooshi that's awesome! Having a specialist who practices in a way you are comfortable with is outstanding. Your team is coming together. That always seems to bring a real positive sense of moving forward.

JLBinPDX

Hi Mooshi,

Seems I'm right about where you are but I guess I was lucky in that my stats (labs?) came back in less than three days. I, too, am triple negative and HER neg. Still don't understand the grade but I do know it's labeled a fairly aggressive. My surgeon and I scheduled a lumpectomy, lymph node whatever it's called (mine, too, look fine so far), and another biopsy (bc it's pre-cancer it's a biopsy instead of a lumpectomy) on the other breast. I then went to the oncologist yesterday and I'm now doing eight rounds of chemo once every two weeks. My oncologist said, "my primary goal is to keep you alive long term." He then offered his reasoning for neo-adjuvant chemo (four months before surgery) since he's most concerned with it having spread and having the tumor still there to measure every two weeks lets him know if the chemo is working and, if it has spread at all, he can be fairly reassured that if the tumor is shrinking, the chemo is also killing bad cells other places. I, too, was very opposed to chemo but I think I have the perfect oncologist--he's progressive, young, spoke of research (which I appreciated since I, too, do research), and is also interested in immune therapy to get my otherwise healthy body to fight for itself. When I asked him what would he do for himself and he came up with four months of chemo followed with surgery (and likely cold cap of his own research and at least one trial study), I was on board. I'd just suggest being open since I was where you are a few days ago and my ideas have now really changed. Best to you!

MTWoman, very helpful. Thank you.

Mooshi

JLBinPDX, my prayers are with you that treatments go well and that you experience a full and swift recovery