35yrs old IDC type1A chemo vs no chemo

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Mbsm224
Mbsm224 Member Posts: 2
edited February 2020 in Just Diagnosed

I am 35yrs old was diagnosed with IDC in my left breast. I received genetic testing and it came back that I have a mutated ATM gene. I had a bilateral NS mastectomy with tissue expanders to eliminate the risk of getting it in my right breast . I received my pathology back and it came back that my margins were clean so I was staged at 1A. At my first oncology appointment I was told she was leaning towards hormone therapy. She said she wanted to do the Oncotype dx test. On my next visit the results of the Oncotype dx test came back with a score of 29 (high risk) so now she wants me to undergo chemotherapy. I am having a very hard time deciding on the intangible. It says I have an 18% chance of distant reoccurrence in the next 9 years without chemo and a 3% chance if I have chemo. I don't feel that 18% is that high and it is all based of if cancer cells were possibly left behind. I have not had a pet scan to check the rest of my body. Something I really want. So I know that chemo is supposed to kill cancer cells but if there were no cancer cells left behind what is the chemo going to kill? If I have chemo now and I get a reoccurrence anyway is the chemo going to be less effective the second time. Also I can't find anyone with type 1A that has received chemo. Is this really necessary or is my doctor just being over cautious. She did make a good point that because of my age I have a lot of years ahead for a chance of reoccurrence. So I am extremely torn Please help me make an informed decision should I get a second opinion

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

    Hi!

    Since your cancer was invasive, there's some chance that cancer cells broke off from your original lump and are circulating in your body now, either through your bloodstream and/or your lymph system. A PET scan wouldn't show those cells because they are microscopic. So, chemo is supposed to kill those cells that are circulating in your body, looking for a new home.

    There are actually plenty of women who get chemo when staged at 1A. It depends on the type of cancer. Women who are triple negative (ER-/PR-/HER2-) almost always get chemo. Women who are like me (triple positive and/or HER2+) almost always get chemo, regardless of stage. And yes, women like you whose Oncotype scores are high are often recommended chemo, regardless of stage.

    Since you have a genetic predisposition to breast cancer and a relatively high Oncotype, it is not surprising that your oncologist recommended chemo. Don't get fooled by stage. Grade matters, too. What grade was your cancer? Mine was Grade 3, which means that it was replicating quickly. Chemo works best on high grade cancer.

    There are lifetime limits on some chemos, like Adriamycin. But, in most cases, you can get chemo again should you recur.

    Good luck!


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  • SimoneRC
    SimoneRC Member Posts: 419
    edited January 2020

    Hi Mbsm224!

    Hi and sorry you find yourself here! I am a fellow ATM mutant. With your age and oncotype score, it sure sounds to me like chemo would be the standard of care. If you have not already seen the TAILORx study results, you should take a look. Based upon the information you posted, having chemo could provide a huge, life saving benefit to you. And under any circumstances , I would not want to roll the dice on a metastatic recurrence. Having a pathogenic mutation also makes me more cancer adverse!

    I know this is all new and it stinks. Imagine if you are with 29 of your best girlfriends. There are 30 of you. 18% means 5 or 6 get metastatic cancer. 3% means 1 gets it. Nobody knows who will be on the bad side of the numbers. Wouldn't you rather be in the group of 30 where it is 1 person than the group of 30 where it is 5 or 6? Metastatic disease means not curable. You are starting off at a low stage. You have a much better chance at a long and healthy life, statistically speaking, if you do chemo.

    Lots to think about. Keep asking questions and keep us posted!





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  • MountainMia
    MountainMia Member Posts: 1,307
    edited January 2020

    Hi Meg. I'm sorry you're here and in this position. The others have given you some wise advice. The only thing I would add is, if you're not confident of your doctor's recommendation, first ask more questions so you can understand it better, and second ask for a second opinion if you're still uncertain.

    btw, my tumor was stage 1, 1.5cm IDC. I had chemo, as it was triple negative and grade 3, or very aggressive. As ElaineTherese said, grade matters, too.

    Good luck.

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

    "I don't feel that 18% is that high and it is all based of if cancer cells were possibly left behind."


    To reinforce what the others have said, this 18% risk is specific to a metastatic recurrence, i.e. a recurrence that occurs in another part of your body, and that is incurable. So it's not a question of whether some cancer cells were left behind in the breast area after your mastectomy. Rather it's a question of whether some cancer cells escaped from the breast prior to surgery (probably well before you even were diagnosed and knew you had cancer) and moved into your body - the bone, the liver, etc.. This can happen through the lymphatic system or through the vascular system (the bloodstream). Even with clear nodes, it's possible that a few cells passed through the nodes undetected. And even with no LVI found in the pathology assessment, it's possible that a few cells entered the blood stream.

    As ElaineTherese mentioned, if just a few cancer cells have travelled from your breast to other parts of your body, it will be much too small to be seen on imaging. But this is precisely the time when chemo can be most effective - chemo can completely kill off small numbers of rogue breast cancer cells hiding out in your body. But if these cancer cells have a chance to multiply and spread to the point of being large enough to be detected by an MRI or CT or PET scan, then while chemo can kill off some of the mass and/or temporarily stop the growth, the recurrence at that point will be too large for chemo to completely kill off. So if you have a metastatic recurrence lurking (18% chance), now is the only time when you can successfully attack it and stop it from developing into full blown mets.


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  • Mbsm224
    Mbsm224 Member Posts: 2
    edited January 2020

    Thank you to everyone that has replied you have definitely given some extra insight into this situation. Honestly until you said grade I don’t think I had ever heard that. I had to go back and look at my pathology to find this and I am a grade 3. With er+pr+her2- . I just think that my head was one place and when the results of this test came back it was a complete shock to the coarse I thought I was on.

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  • NoWhyToIt
    NoWhyToIt Member Posts: 87
    edited January 2020

    Hi. You will get advice from many but there is a large difference between 3 and 18 percent chance. If it were me I would do chemo. Cells are microscopic. Even a PET can miss some

    Stage 3, 6 year survivor

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  • margo53
    margo53 Member Posts: 165
    edited February 2020

    Mbsm224: I had a high Risk Mammaprint and doing chemo for that reason, plus being PR-. As shown below,my diagnosis is similar in stage and grade to yours. I have learned a lot from the advice you have been given here. All the best in your decision making process

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