Chemotherapy or not? Opinions or information needed!!

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fightingbcwithmymum
fightingbcwithmymum Member Posts: 3

Dear All,

My mom was diagnosed with breast cancer--pT1cNimi and ER-positive, PR-negative, HER2+.

Her doctor recommended Hormone therapy, which should, comparing to chemo and targeted therapy, significantly reduce her recurrence rate from 30% to around 20% (in a 10-year range). Her doctor also explained how hormone+chemo therapy would reduce the risk to 15%, and around 9% if all three treatments combined; however, he left the decision regarding chemotherapy and targeted therapy to my mom.

My mom, after watching my uncle suffering from chemo+targeted treatments and also hearing/reading so many about the side effects of chemo, is prone to refuse chemo and targeted therapy; however, on the one hand, my dad, who is a 100% believer in science, thinks that even 0.0001% should be considered significant in the case of cancer and insists that my mom should do everything to prevent any chance of recurrence.

I have been having trouble searching for statistics or information regarding what percentage of the patient diagnosed with similar stage and type of breast cancer receives only hormone therapy, hormone+chemo, Hormone+chemo+targeted, or none. All I found were mostly survival rates relating to different types of treatments.

It's deeply appreciated if anyone can share any information or personal experience!!!

Thank you!!


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  • fightingbcwithmymum
    fightingbcwithmymum Member Posts: 3
    edited June 2015

    Sorry! I accidently deleted the content of the post. Here it goes again.

    Dear All,

    My mom was diagnosed with breast cancer--pT1cNimi and ER-positive, PR-negative, HER2+.

    Her doctor recommended Hormone therapy, which should, comparing to chemo and targeted therapy, significantly reduce her recurrence rate from 30% to around 20% (in a 10-year range). Her doctor also explained how hormone+chemo therapy would reduce the risk to 15%, and around 9% if all three treatments combined; however, he left the decision regarding chemotherapy and targeted therapy to my mom.

    My mom, after watching my uncle suffering from chemo+targeted treatments and also hearing/reading so many about the side effects of chemo, is prone to refuse chemo and targeted therapy; however, on the one hand, my dad, who is a 100% believer in science, thinks that even 0.0001% should be considered significant in the case of cancer and insists that my mom should do everything to prevent any chance of recurrence.

    I have been having trouble searching for statistics or information regarding what percentage of the patient diagnosed with similar stage and type of breast cancer receives only hormone therapy, hormone+chemo, Hormone+chemo+targeted, or none. All I found were mostly survival rates relating to different types of treatments.

    It's deeply appreciated if anyone can share any information or personal experience!!!

    Thank you!!

  • Moderators
    Moderators Member Posts: 25,912
    edited June 2015

    Dear fightingbcwithmymum, Welcome to the BCO community. We hope that you will find some support and information here from others who share similar experiences. While you wait for some responses you may want to check out this link on our site about Her 2 +breast cancer. Keep us posted and let us now what you learn. The Mods

  • muska
    muska Member Posts: 1,195
    edited June 2015

    Hi Fighting, I am sorry to hear about your mom's situation. From what you are describing it appears she has a good doctor who explained the stats. If your mom is not sure what to do maybe a second or third opinion would help and she would also have an opportunity to ask more questions about the stats. I personally, never found those stats of much help. Talking to experienced professionals give me much more than any percentages. Age and personal medical history should play a big role in such decisions as well.

    Good luck!

  • slv58
    slv58 Member Posts: 1,216
    edited June 2015

    Dear FBCWMM, I don't have the same pathology as your Mom but wanted to offer support and MY opinion. Could she live with the consequences if it recurred? I believe that we should all do absolutely everything possible to increase our chances of voiding our bodies of this. It amazes me how many women I meet at my hospital who have such a negative (and I truly believe, outdated) belief of the side effects of chemo. I know it's not the easiest thing to go through and to be honest I was under the impression it would be horrible (from experiences from 40 years ago) but the second thing my MO told me was that if I was feeling sick that I should call right away because it meant that she wasn't doing her job. That anti nausea meds have come a long way and if one didn't work, there were many to try. This is my second time going through chemo and I have to admit overall it's not that bad. I had horrible bone pain the first time with docetaxol, that pain meds just didn't touch- but it only lasted 3 days each cycle and in the scheme of things, wasn't very long. I would do it again just to be able to live with myself and increase those odds, even for a few %'s. This is a decision that your Mom has to make, but talk with her MO and make sure her decision isn't being made on outdated horror stories.

    Hugs, Shari

  • ruthbru
    ruthbru Member Posts: 57,235
    edited June 2015

    Goodness, since she is HER2+, IMO she absolutely NEEDS chemo! Before the discovery of that over-expressed gene, and before Herceptin, that is the reason why many early stagers, who statistically shouldn't have recurred, did. Hercepetin is like a miracle drug for HER2+ women! I can't imagine why the doctor is so neutral about this!!!!!!!!

  • SpecialK
    SpecialK Member Posts: 16,486
    edited June 2015

    The size category on BCO is inclusive of all sizes less than 1cm - generally speaking anything over 5mm and Her2+ is eligible for chemo/Herceptin.  There is relatively new info regarding 12 Taxol and Herceptin being very advantageous for smaller Her2+ masses, while being somewhat more gentle/tolerable.  How large is your mom's cancer?

  • ruthbru
    ruthbru Member Posts: 57,235
    edited June 2015

    If the diagnosis in the signature line is her mom's, it is 1 centimeter and staged at 1B.

  • treelilac
    treelilac Member Posts: 245
    edited June 2015

    If nodes are involved, it appears there are more reasons to take advantage of chemo.

  • lintrollerderby
    lintrollerderby Member Posts: 483
    edited June 2015

    Hi, I'm sorry you're here. Judging by the TNM stats you posted, along with the hormone receptor status and HER2 amplification, I would say she most certainly should STRONGLY consider chemo, targeted therapy, and anti-hormonal therapy.

    Your mom's tumor being T1c means it's between 1 and 2cm. Building on what Special K stated, when dealing with either a HER2+ or Triple Negative tumor over 0.5cm, the guidelines state that chemo should be considered, and if over 1cm, chemo should be given. That's because these types are known to be very aggressive and more likely to recur in distant areas of the body. It doesn't mean they always will, but it confirms she's not dealing with a slower-growing, more indolent cancer.

    Did you mean Ni or N1mi? The difference would be the amount of cancer cells found in the node(s). Assuming there's only one node found with disease, then the first designation would be that isolated tumor cells of less than 0.2mm or less than 200 cells were found. The second designation would mean that microscopic mets were found in the node and measured greater than 0.2mm, but less than 2mm. Generally speaking, cancer found in the nodes means she's dealing with a cancer that for whatever reason, has become mobile. When evidence of this is found, it increases chances that other cells have escaped and entered the bloodstream or lymphatic system--besides the ones visible in the axilla. There are opinions in the research community that when evidence of lymphatic spread from a smaller tumor (generally under the 2-3cm range) is found, it points to a tumor with more aggressive characteristics.

    Since you indicated the TNM staging was from a pathologic designation (the p at the beginning) rather than clinical, did they do imaging to confirm an M0 rating? Given this tumor's worrisome findings, if it were me, I'd want to know for sure that the team had looked and found no evidence of distant metastatic spread at this point.

    The HER2 amplification, or HER2+ staining indicates an inherently aggressive tumor. Please don't take that I'm only delivering bad or worrisome news. While NO ONE wants breast cancer, the available treatment options for HER2+ disease means that women with this diagnosis now have significantly better chances of long term survival (both disease-free and metastatic) because of targeted therapies. As others have said, Herceptin and Perjeta have been game-changers for these patients. As someone with Triple Negative, I wish I had any targeted therapy available.

    The option of anti-hormonals was discussed. While these should definitely be given because she is ER+, they are very unlikely to be the sole treatment of choice given both the amplified HER2 and the PR-. As I've discussed, the HER2+ means she really does need the targeted therapy. Typically, PR- tumors have a more aggressive profile than PR+. That's if all things are equal. Comparing like tumors that only differ in their PR-, generally, though not always (there are no absolutes in breast cancer) means a tumor with a higher rate of proliferation and dissemination when there is an absence of Progesterone Receptors. For instance, in ER+/PR-/HER2- tumors, these are generally Luminal B, and more likely to be Grade 3. ER-/PR-/HER2+ is known for its lack of hormone component, which reduces treatment options. And then there's ER-/PR-/HER2- (Triple Negative) which is a designation of exclusion and has no targeted therapies because it's an umbrella term describing what the tumor lacks rather than what it contains. PR's role is a somewhat contentious area for researchers, but the consensus is that its absence spells a more active tumor.

    Please don't take that I've been gloom and doom. Your mother truly does have every reason to expect and hope for a long, disease-free life, particularly if she avails herself to all the treatments. I'm not someone who states someone must always do all of the conventional treatments recommended. I went against medical advice on one major portion of treatment. However, from the standpoint of being informed about what her diagnosis means about future recurrence risk along with the treatment options that can be used for her specific diagnosis, I think this is a time to pull out all the stops and give herself the best shot at living disease-free and putting this in the rearview mirror.

    Best of luck.

  • fightingbcwithmymum
    fightingbcwithmymum Member Posts: 3
    edited July 2015

    Dear All, Thank you so much for all the information and support. My mom has met with her doctor earlier today to discuss the schedule for all three treatments discussed. I feel like my mom is making all her decision more for us, which makes this difficult for me to express my opinion. Of course I definitely want her to live a long, disease-free life, but I also don't want her to suffer from something she does not want (well, of course no one wants cancer :/) I don't even know what decision I would make if it happened to me. She keeps saying that she's already 60+ and she can live with that 20% survival rate... hugs!

    Here goes Individual replies:

    Dear muska, thank you. My mom has met with other doctors and has been reading articles from sources provided by her doctors. Thanks again for your support. Good luck to you, too.

    Dear slv58, I agree with you regarding those outdated stories and information about chemo, but I guess those uncertainties (ex: the side effects vary after each chemo session?) surrounding chemo are definitely one of the many reasons making my mom hesitate. Thank you so much for providing us with more information relating to chemo side effects.

    Dear ruthbru, Thank you for your opinions :) I guess the doctor wanted to give my mom more space since it will be my mom and her body (also mind) receiving and fighting with everything that follows. The doctor did mention that a more "standard/conventional" procedure would be taking all three therapies. And yes, the information listed in the signature lines is my mom's.

    Dear treelilac , I agree. Also, what I learned from the information provided by my mom's doctor is that targeted therapy is usually treated with or after chemo and that's how those stats are calculated (b/c my mom was asking if it's possible to do only targeted therapy without chemo). Thanks!

    Dear lintrollerderby, Thank you so much for all those explanations. I really appreciated it. Yes, a general ultrasound imaging has been done and confirmed that there is no distant spread. And her correct pathological diagnosis is N1mi instead of Nimi. Thank you for pointing that out and explaining their difference. I have explained to my mom all the aspects discussed in your response. It really helped a lot when all these stats are compared with each other, especially when we are both just learning about this. Huge thanks!

  • ruthbru
    ruthbru Member Posts: 57,235
    edited July 2015

    Best of luck to your mom and you, fighting. You are a wonderful daughter!

  • Anonymous
    Anonymous Member Posts: 1,376
    edited July 2015

    fighting, we went through something with my own mom. Three weeks after I was diagnosed with breast cancer, so was she. The initial biopsy indicated Her2- but the post-surgery pathology indicated Her2+. Another FISH test was ordered, as well as the oncotype. Her (our) oncologist pushed for the same heavy-duty chemo that I'd be doing. It didn't make sense to either of us, that for her Stage I cancer, she would get the same treatment I would with a Stage III cancer. She didn't want to do chemo due to her diabetes, so I found some alternatives for her (like Taxol/Herceptin only). In the end, her third FISH test came back negative and her oncotype came back at 17 so she got to skip chemo entirely.

    Your mom's stats show she's Grade 1. Are you absolutely positive she is Her2+? From my understanding, it's possible to be Her2 and Grade 1 but it's extremely rare. Her2 is my nature aggressive and fast-growing, so the majority are Grade 3, with a few Grade 2 thrown in there. Could additional testing be warranted? I know the oncotype isn't ordered for Her2 but maybe she could qualify based on being Grade 1.

    If she does do chemo, there's a trial going on it sounds like she's qualified for: https://clinicaltrials.gov/ct2/show/NCT01853748. Taxol/Herceptin is compared to TDM1 for very early BrCa. TDM1 is a targeted therapy that combines Herceptin with a chemo agent in the way that delivers chemo directly to the cancer cells. It's not without it's side effects - I was on it in a different clinical trial - but it's a lot easier than traditional chemo. There may be even more options out there too. Doctors and researchers are starting to get creative with using targeted therapies for Her2 so those with a favorable staging don't have to suffer through hard-core chemo.

  • ruthbru
    ruthbru Member Posts: 57,235
    edited July 2015

    A friend of mine who was in her mid-60s was allowed to do Herception only because, along with being a very early Stage IA, she was very ER/PR positive (I can't remember the exact numbers but it was close to 100%), so anti-hormonals were very effective for her situation. It must have worked because she is 8 years out!

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