Surgery alone for treatment.

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Iamloved
Iamloved Member Posts: 228

Just curious if anyone has done surgery only as their treatment?

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  • ElaineTherese
    ElaineTherese Member Posts: 3,328
    edited June 2020

    Iamloved,

    Didn't you do surgery-only when you were first diagnosed? I don't need to tell you that HER2+ cancer is aggressive. You can choose to go that route again; you're the patient and you have a right to make that decision for yourself. As a fellow HER2+ breast cancer patient, I would just say that you could try chemo + Herceptin and then stop if the side-effects are awful. ((Hugs))

  • Beesie
    Beesie Member Posts: 12,240
    edited June 2020

    Evie (screen name Hindsfeet), who I corresponded with for years starting with her first DCIS diagnosis in 2007, went with surgery alone for that first diagnosis and her subsequent localized recurrences, including an invasive HER2+ recurrence. Once she developed mets, she opted for other treatments.

    She has passed away so sadly she is not here to respond to your post. As ElaineTherese said, HER2+ is aggressive. I really don't know if in hindsight Evie would have chosen to have other treatments earlier on versus the very aggressive treatments that she had once her cancer was metastatic.

  • Iamloved
    Iamloved Member Posts: 228
    edited June 2020

    ElaineTherese I did do just surgery for my first dx. I think i could tolerate the usual side effects. I would fast before my treatments in hope of getting a better response and possibly protect my normal cells. It is the heart damage I fear. I know 5 people who have had major heart issues with chemotherapy. 3 died and 2 have irreversible damage. If I am going to die at least let the cancer take me not the treatment. I have been struggling for almost 2 months trying to decide. Sadly Reoccurrence just seems inevitable with breast cancer no matter what one does. Positive note my pet scan was clear except for my dx.

    Beesie As of right now I do not regret my decision but I am sure if I had mets it would be very different. I am going to keep praying to make the right choice for me.

    Thank you both for helping me

  • SummerAngel
    SummerAngel Member Posts: 1,006
    edited June 2020

    I basically had surgery only, but my diagnosis is far different from yours. It's not true that recurrence is inevitable, the majority of women don't have one. However, the more aggressive the cancer, the more likely the recurrence and that's why more treatment is offered. It's always your choice, but personally if I had your diagnosis I would go for the recommended treatment.

  • ElaineTherese
    ElaineTherese Member Posts: 3,328
    edited June 2020

    Iamloved,

    Since you fear heart damage, Adriamycin is not for you. But you could do Taxol or Taxotere, which typically don't cause heart damage. Yes, Herceptin could cause some loss of heart function, but that is often temporary. When I did chemo and Herceptin, I had heart scans every four months to make sure that my heart was functioning properly. So long as it was, I continued with my treatment. I'm sure your doctors would do the same kind of monitoring, given your concerns.

    I understand that you've watched others struggle and even die from chemo. But you aren't them. I wouldn't generalize from their cases as they could have had pre-existing conditions that you lack. What do your doctors say? Do they think that your heart could bear chemo? That should be your focus. My next-door neighbor did as much chemo as she could (she was HER2+ as well), but stopped when it affected her heart (she had pre-existing heart issues, made it through four treatments of Taxotere + Carboplatin + Herceptin + Perjeta). After surgery, it was clear that she'd had enough chemo -- she had had a pathological complete response to chemo as all the active cancer was gone.

    Good luck, making your decision!

    ((Hugs))

  • Beesie
    Beesie Member Posts: 12,240
    edited June 2020

    Iamloved,

    As SummerAngel said, it is not inevitable that you will have a recurrence.

    Here's the thing with HER2+ cancers. When I first arrived here back in 2005, HER2+ cancer, being the most aggressive, had the worst survival rate. Since then, treatments such as Herceptin have become available and mainstream. Now when you look at the new staging criteria, based on pathological features and prognosis, HER2+ cancers are actually staged lower than HER2- cancers because the prognosis / survival rate is better for HER2+ cancers. But this assumes that the patient undergoes the recommended treatment.

    It is unquestionably true that there are health risks from the treatments. The question is whether, for you, at your age and with your diagnosis, those risks are greater than the metastatic / mortality risk from your diagnosis, should you opt out of treatment. With HER2+ cancers, more than any other breast cancer subtype, the answer is more likely to be that the risk from the cancer is significantly higher than the risk from the treatments. This is why chemo and Herception are recommended even for the tiniest HER2+ cancers, whereas chemo would not be offered for cancers of an equally small size if the cancer is HER2-.

    Here's an example. I don't know your diagnosis so I just pulled one of the pages from the AJCC Staging Manual to highlight the different prognostic staging for HER2+ vs. HER2-, when all other pathological factors are the same. The critical last column is not easily legible - the Stage for the HER2+ cancer is in this example is Stage IB; the Stage for the same cancer, but HER2-, is Stage IIB.


    image

    Have you talked to your MO about your risk level with and without treatment? If not, you certainly should. While not as good as a discussion with your MO, there are a couple of computer models that assess mortality risk with and without treatment. Your current diagnosis is a recurrence, so technically these models are not accurate for you and should not be used. However if you input your current diagnosis as though it was a new diagnosis, it will give you an idea of how much treatment may be able to reduce risk.

    Breast Cancer Treatment Outcome Calculator With this model, I find that the pictogram is the best way to see the results. Where it says "display as" under the chart, select "Pictogram". Then in the boxes on the bottom left, you can input various treatment options and update the graph. The graph will then show the 15 year mortality rate, broken out by non-cancer deaths and cancer deaths, and will also show the number of people who are alive because they had the treatment.

    PREDICT This model works similarly, and is also easiest to understand if you select "Icons" as the viewing option. Here if you select the full range of treatment options, you will receive information on the number of deaths due to other causes, deaths related to breast cancer, extra survivors due to trastuzumab (Herceptin), extra survivors due to chemotherapy, extra survivors due to hormone therapy, and survivors with surgery alone.

    Again, because your diagnosis is a recurrence, these figures won't accurately relate to your situation, which is why a discussion with your MO is so important. However these models will give you a high level idea of what the mortality rate might be with surgery alone, versus the number of survivors thanks to the various treatments.

    The decision is yours alone, and you have to make the decision you are comfortable with. You replied to my earlier post saying "As of right now I do not regret my decision but I am sure if I had mets it would be very different." As you make your decision, make sure that you understand your metastatic risk level, and the extent to which treatment can reduce this, so that whatever happens, you've made a decision that you won't regret.


  • QueenB44
    QueenB44 Member Posts: 27
    edited June 2020

    lam loved,

    I understand your dilemma on making treatment decisions. I was diagnosed with DCIS stage 0, 0/0 nodes HER+ late 2018. I chose to have a lumpectomy that was successful with clear margins. I was offered hormone therapy and chose not to do it for the fear of side effects. I was also offered rads, even went as far as getting my tattoos and on the day before my first treatment I bailed out because of the fear of side effects and reading studies of getting secondary cancer - particularly thyroid (which my mother had). So, here I am 18 month out of my Lumpectomy and now 18 month mammogram found more calcifications on the same breast but in a different area. I'm now facing another biopsy and thinking that I probably should have took some additional treatments. If I did, I might not be back on this forum today. Right now I know if my biopsy comes back positive for anything I will chose a MX. Decisions are tough, there are side effects to everything. Best of luck to you.

  • Redkitty815
    Redkitty815 Member Posts: 44
    edited June 2020

    If you are concerned about cardiac side effects of treatment, you may want to ask your MO if you can consult with a cardiac oncologist. My PCP is a cardiologist and had me do some labs for cardiac biomarkers after I finished Adriamycin. One of them was high and there were a couple of other red flags in additional tests they did. At about the same time, my oncologist got the post-surgical pathology showing my tumor to be triple-positive rather than HR+/Her2- as the biopsy had shown. My MO and PCP referred me to a cardiac oncologist to determine if it was safe for me to start Herceptin. He was able to identify the root cause and treatment for the cardiac symptoms, confirm that Herceptin would not cause similar issues and recommend a plan for monitoring me.

    Herceptin is a godsend for people with Her2+ cancer and, while I completely understand concerns about cardiac effects especially given my experience, my understanding is that the effects from Herceptin are typically reversible and patients are closely monitored.

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