90% non-recurrence rate wondering about additional treatment

Options
knots
knots Member Posts: 6

HI am new here.  My oncologist suggested I do not take chemo because my tumor is small 7mm and grade 2 and no lymph node involvement.  He said if I do nothing I am at 90 percent that the cancer will not reoccur.  Each thing I do adds on 3 percent advantage for me ie:  Herceptin, radiation and hormone therapy.  I am wondering if it is worth doing any of those extra treatments.  I am worried about a recurrence and a new cancer developing.  The cancer was Her2 positive and ER and Pr positive.

Comments

  • carmstr835
    carmstr835 Member Posts: 388
    edited April 2018

    Well, did he say 90% chance of no reoccurrence with in 5 years.? 85% chance at 10 years and 80% chance in 20 years? Or just a 90% without a time period.

    I would not want to be one of the 10 people out of 100 that becomes stage 4 with in 5 years. Lots of reoccurrences happen with in the first 18 months of the 1st 5 years. My oncologist also suggested no chemo, but that was when he thought I was HER2 - he did not however give me his blessing to skip the anti hormone treatments or radiation. Does he plan to do the Onca score or Mammaprint?

    I am lymph positive but lots of statistics lump 1-2 lymph nodes positive with 0 lymph as far as reoccurances . I don't believe them, hence the reason I insisted on the "works". Another issue is that the internal mammory lymph nodes inside the chest wall can be positive. They are not generally tested but research in San Antonio, Texas, some breast surgeons found positive internal lymph nodes during the DEIP surgery that were previously thought to be lymph node negative. I plan to ask to have my internal lymph nodes tested during my DIEP surgery in July.

    It might be a good idea to get a 2nd opinion. That is what I did and it changed my oncologist's mind regarding chemo.

    I hope you are comfortable with what ever decision you decide. Just remember,we don't get a do over if we mess this up.

  • rdeesides
    rdeesides Member Posts: 459
    edited April 2018

    Aside from positive (or not positive) lymph nodes, cancer cells can be carried through the lymphovascular system. Do you have lymphovascular invasion? No one talks about this much but I don’t know why because it seems just as important as lymph nodes.


    R

  • knots
    knots Member Posts: 6
    edited April 2018

    My oncologist just said 90% without a time period.  He said that chemo would just add 1% but Herceptin, radiation and hormone would add 3% each.  They did not do a ocotype test because they said that the fact that it was HER2 surpassed any testing.

  • Beatmon
    Beatmon Member Posts: 1,562
    edited April 2018

    I thought that Her2+ was now treated at your size of 7mm due to how aggressive it can be. I’m assuming that the cancer you have was Invasive. You feel you need to treat it...get a second opinion. Best wishes and please let us know what you decide

  • knots
    knots Member Posts: 6
    edited April 2018

    NO I did not have any invasion of the lymphovascular system.

  • knots
    knots Member Posts: 6
    edited April 2018

    yes it was invasive ductal carcinoma.  

  • NotVeryBrave
    NotVeryBrave Member Posts: 1,287
    edited April 2018

    You can enter your information through the Predict model or the LifeMath model online and play around with the addition or subtraction of various treatment modalities to get an idea for yourself.

    I think that since you are asking here - you must have some questions in your head about the best course of action. I think second opinions are great. Sometimes you also need to go back to your first opinion doctor with new questions that come up as you consider things.


  • voraciousreader
    voraciousreader Member Posts: 7,496
    edited April 2018

    today, more and more patients who are HER 2+ and have tumors between .5 and 1 cm are being offered chemo and herceptin and now perjeta. Please seek a second opinion OR have your case presented before a tumor board.


    Good luck

  • Meow13
    Meow13 Member Posts: 4,859
    edited April 2018

    This was something I saw that looking at her2+ tumor node negative by size:

    less than 5mm,

    between 5mm and 1cm,

    and between 1cm and 2cm.

    The percentages given are 5 year survival and distant recurrence.

    https://share.kaiserpermanente.org/article/study-f...



  • Meow13
    Meow13 Member Posts: 4,859
    edited April 2018

    voracious, have you found something relating to the data from kaiser, I am not sure how many cases they have with these smaller tumors since they are usually found 1cm or greater.

    They say 16,975 her2+ patients but I am not sure if they were all less than 1cm.

  • Retzie
    Retzie Member Posts: 7
    edited April 2018

    Knots, it sounds like you are not convinced that 90% is a number you are comfortable with and when I was making my decisions about life and death, the percentage I was contemplating was even less. I’m a worrier. My oncologist recommended a lumpectomy and radiation but when I researched and read about the experiences of the women that metastasized because their cancer reoccurred, I knew, for me there was only one choice. I have just completed a double mastectomy less than two weeks ago with plans for a second surgery to reconstruct. The pathology came back on my breast and I was told more cancer was found in the deeper tissue. This was after a sonogram, mammogram, and PET determined there was only the 2mm tumor just days earlier.Strange, I know, but nothing could’ve given me greater relief than to know I made the right decision for me. Each person’s odds of getting cancer is dependent on their genetics which also impacts your percentages. My family is riddled with cancer so my odds are worse for reoccurrence. I hope anything I’ve shared has helped. Good Luck

  • Ingerp
    Ingerp Member Posts: 2,624
    edited April 2018

    knots--I will be following this thread closely. This is my mindset:

    I am absolutely good with zapping the shit out of a breast that's misbehaving. I like that rads will be in my treatment plan. The rest of what I believe will be recommended this time around I was very leery of. Like you, I look at the probabilities with no further treatment and see that they're pretty good. Actually, *really* good. I don't like the idea of putting a lot of heavy chemicals in my body, and the idea of taking a pill for 5-10 years was kind of repugnant to me. BUT. . .

    I've been doing a lot of research and PM-ing with some of the fine women here on BCO, plus I had an unintentional 5-minute conversation with my BS when I saw him for a post-op check last week. He said that rads and an AI give the biggest bang for the buck. He said if it were a family member refusing an AI, he'd crush it up and sneak it in her food--he is that big a believer. No he's not an oncologist but he knows a lot about BC and that short conversation brought me around on taking an AI. (Plus the fact that my tumor this time is highly ER/PR+ makes me think getting rid of as much estrogen as possible is probably a very good idea.) I have also read (and read and read) about what a game-changer Herceptin has been for HER2+ patients. I can see being talked into that. However, I still don't think Taxol is warranted. That's what I've been stressing about--I have my initial consultation with an MO on Monday (I didn't need one last time around), and I am wondering what she'll say when I tell her I'm willing to do Herceptin but do not want the Taxol. This one sit-down has caused me more angst than any of the procedures/treatments I've had so far. I've told several friends/family that maybe I'm blowing this out of proportion and she'll say rads + an AI are enough. That would surely make my day, but I guess we'll see come Monday.


  • hapa
    hapa Member Posts: 920
    edited April 2018

    Chemo comes with its own risks, like a 0.5% chance of developing leukemia. Additionally, a non-zero percent of breast cancer patients succumb to infections while on chemo. Is the increase in survival odds worth the risks associated with chemo?

    I think you really need to ask your doctor what his timeline is on your recurrence rate. Then ask him what happens after those x number of years. Then take that into account along with your age and general health when making your decision.

  • stephincanada
    stephincanada Member Posts: 228
    edited April 2018

    A ten percent risk, while small, is significant. The treatment for your tumor has relatively low toxicity. You could do Taxol (the gentler of the taxanes) and Herceptin only, as was done in the APT trial, which had extremely positive results. If you do cold caps, you get to keep your hair. Herceptin has very few side effects, and any effects that you may experience are relatively benign.

    In my province, Herceptin was previously denied for tumors that were less than 1 cm. But in 2011, the government changed its position because it was determined that Herceptin provided significant benefit for small tumors. This means a lot in the context of our universal health care system; the government is willing to pay for the treatment, even for small tumors, because it works.

    When I was making treatment decisions, I couldn't shake the image of the risk analysis grid we use at work. We measure the likelihood of adverse outcome (in your case, 10% risk of recurrence, which is low), against the impact of that adverse outcome (in your case, recurrence, possibly leading to premature death). Even though the odds of a recurrence are low, you still get a "medium" risk score due to the potential catastrophic outcome.

    image

    You'd also have to factor in toxicity related to treatment, but here, that is small.

  • knots
    knots Member Posts: 6
    edited April 2018

    Well the Kaiser article was really informative. I trust my doctor but I think when he said 90% with no treatment after surgery it sounded pretty good.  I mean I just don't want to deal with the side effects.  I mean I understand that Hercepton does not have any side effects but I am worried about the hormone therapy.  I talked to him and he said that he most definitely thought I should take the hormone therapy  but he said that I would benefit from the other treatments as well.  I think I thought 10% was a small number.  But now I don't know.  It does seem to be that less is more with therapy and that according to my doctor chemo would  not offer enough benefit.  I am still trying to make up my mind.  I meet with my radiologist on 23rd.

  • voraciousreader
    voraciousreader Member Posts: 7,496
    edited April 2018

    meow...according to the 2018 NCCN Breast Cancer Treatment Guidelines....ER+ HER2 positive tumors smaller than 5 mm should consider chemo and herceptin. Tumors 5mm and 1 cm, are offered it. And over 1 cm there is evidence that chemo and herception is recommended.. If you read the NCCN guidelines, it is in the footnotes that explains the dilemma for tumors under 1 cm. Dancetrancer created a thread all about the dilemma. That said, you are correct. Most HER 2 positive tumors are usually discovered once they are greater than 1 cm. However, with better imaging and more patients getting screened, more small tumors are being found. Ethically speaking, there will not be a randomized study for those small tumors because iphysicians do NOT want to exclude from offering the combination because of the aggressive nature of HER 2 positive tumors.



  • Meow13
    Meow13 Member Posts: 4,859
    edited April 2018

    Thanks voracious, I had a feeling that you have seen more than I had,

  • Becca953
    Becca953 Member Posts: 99
    edited April 2018

    I did seek a second opinion from Johns Hopkins and the team there recommended the exact same treatment as my oncologist. Both said they are treating smaller and smaller HER2+ tumors using chemo and Herceptin. Perjeta is added regardless of size 1cm and under if lymph node positive. Radiation is used for lumpectomy or if lymph node positive. I asked about Herceptin without Taxol, and there are some trials using this regimen. However, general consensus seems to be that Herceptin needs the Taxol or another chemo to get it started. Many of these protocols are relatively new, even Perjeta, and now Neratinib, so it is difficult to ascertain long term data as well as long term side effects. There are also two other new drugs showing promise in trials. Only time will tell. Even most oncologists admit that they are still working out how to best sequence and pair HER2+ treatment across the board.

Categories