Fast-growing, oncologist not afraid to wait 2-4 weeks for chemo

LovesLoons
LovesLoons Member Posts: 68
edited October 2016 in Triple-Negative Breast Cancer

Ok so my oncologist believes my tumor has only been "in there" for 4-5 months (based on when I started having symptoms of a mass). I have very little breast tissue, so I can understand his thinking. When it was found, it was 5 x 2 x 5 cm, and I can feel it has grown in the last 2 weeks. 0__0 (I can feel hard tissue where there wasn't really anything 2 weeks ago).

I want to be in a study they are doing. The difference between starting chemo and being IN the study versus not being in the study is an extra 2-week wait. My oncologist said he wouldn't wait, in my case, 6-8 weeks, but 2-3 weeks he is comfortable with.

I am going to Mayo in Rochester, and the 2 oncologists I'm working with (main doc and his "fellow) seem really, really good. Does this sound like a normal fast growing tumor or is this a bit too fast?

I get these zinging, stabbing pains that last about a minute at a time too. I almost feel like it's going to burst outta there like in Alien ...

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Comments

  • cubsfan
    cubsfan Member Posts: 49
    edited October 2016

    loves,

    My humble opinion is the sooner you start the better. Triple negative is aggressive My daughter was diagnosed with triple negative with a bx, then had lumpectomy, and started chemo 2 weeks after that. From the time she found the lump until chemo was 6weeks The oncologist wanted it started ASAP. she is 35 and was stage 1. Hope this helps. My best wishes for successful treatment x

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  • LovesLoons
    LovesLoons Member Posts: 68
    edited October 2016

    Thanks Cubsfan. :) My total time from biopsy to chemo would be about 6 weeks total (I was diagnosed Oct 4th). I have to shrink my tumor before surgery so I have to do chemo first. The extra 2 weeks is just for the pathology to come back.

    I guess what I was looking for is a "normal" rate growth for fast-growing tumors. Maybe no one really knows I guess. :) You never known unless you ask though.

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  • Jacklin
    Jacklin Member Posts: 162
    edited October 2016

    Hi LovesLoons, I don't think there is such a thing as a 'normal' rate of growth for TNBC. My tumour grew from a small pea to bigger than a baseball in 3 weeks! My oncologist started chemo in a little over 24 hours after I first met with her, it was growing that quickly.

    Like you, I also had these stabbing sensations and it felt like my breast was going to explode. Once I started chemo, the tumour responded well and started to shrink quickly.

    I think you actually do know what you're going to do, I can sense it. You will do what is right for you.

    Wishing you all the best

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  • Kat1984
    Kat1984 Member Posts: 47
    edited October 2016

    hiya,

    I too had 6 weeks from diagnosis to starting chemo. This was due to further tests on my other breast and under going fertility preservation (harvesting eggs) which needed to be done at the right time in my cycle. I didn't notice the tumour getting bigger and it started shrinking after the first chemo. After 4 ACs I'd had a PCR and had surgery. Everyone's body is different but I chose to trust my surgeon and am happy with that. Although it was a looooong 6 weeks! Best of luck

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  • Cowgirl13
    Cowgirl13 Member Posts: 1,936
    edited October 2016

    It looks like your tumor size is large, aggressive, and the triple negative--I would not wait the extra 2 weeks.

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  • debiann
    debiann Member Posts: 1,200
    edited October 2016

    What is the advantage to being in the study? What are they offering that makes waiting the extra 2 weeks worth it? If there is not a really good reason, I'd want to start the chemo ASAP.

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  • Redporchlady
    Redporchlady Member Posts: 113
    edited October 2016

    I went to Mayo in Rochester also and I would trust your ONC and fellow. I was stage 3a and I got a PCR and all I knew was that I had to do what was right for me. Good luck and prayers and hugs

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  • LovesLoons
    LovesLoons Member Posts: 68
    edited October 2016

    Thanks everyone. The advantages are that they do a bunch of extra testing before, during, and after chemo even if I don't get the new drug, gives us more info to work with. (And they pay for it).

    I am going to ask a few more questions about the study and then decide, but I am 95% sure I will join it. If something changes in the meantime, or the oncologist thinks I can't wait for any reason, we'll start chemo sooner.

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  • Meow13
    Meow13 Member Posts: 4,859
    edited October 2016

    Good luck lovesloons.

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  • reflect
    reflect Member Posts: 576
    edited October 2016

    Hi Lovesloons, Please make sure that the results will actually be available to you for your treatment decisions. I'm not sure that's always the case with studies. Good luck.

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  • SpecialK
    SpecialK Member Posts: 16,486
    edited October 2016

    It appears from other posts that you are considering the I-SPY2 trial. According to their site the info you will be supplied with hormonal receptor and Her2 status, and results of Mammaprint/Blueprint testing. This is information that can be made available without trial participation. It appears all other lab/imaging will not be made available, as is pretty standard in most trials. You also have no control over which arm you will be sorted to. Please confirm with your doc what info you will have access to. Trials are conducted for the purpose of information gathering for whoever is conducting the trial - far less so for the patient as an individual.

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  • LovesLoons
    LovesLoons Member Posts: 68
    edited October 2016

    Thank you again for the replies!

    New info: I will be doing the biopsy the 26th, the study coordinator will get my results Monday, Nov 7th (the results will actually be back the Friday before that Monday). So it won't be "2-4 weeks" like the study consent papers say. That makes me feel a lot better.

    Special K (and all interested) I thought they would at least have the breast MRI results. ?? Is that not the case? I am doing the study at Mayo in Rochester, MN. I will ask my oncologist, but I was told that "we would have more information on how your tumor reacts to chemo" if I go through the study, and we have these extra tests (my impression was the breast MRI is especially helpful).

    I think some of the blood/biopsy results are for research things they think are relevant but don't know HOW yet; I can understand not getting those results.

    Something else interesting I just learned.-- I thought the MammaPrint tests were only for those with Stage I and II and tumors under 5 cm. Apparently that is not the case, at least not with this study. Not sure why.

    Something else I read, and I think it was for this study, that they learn as they go with this study, so if you are a late-comer rather than one of the first ones in the study, they will have more info to be able to steer you toward better treatments. I don't know if that was this specific ARM of the study or not ... but I do believe they also get rid of study drugs that are doing poorly pretty quickly.

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  • SpecialK
    SpecialK Member Posts: 16,486
    edited October 2016

    In the Frequently Asked Questions (FAQ) section of the ISPY2 site it does say that your MRI info will be shared with your oncologist, and that you will have several over the course of chemotherapy plus study drug, if applicable, prior to surgery. You will have info that is provided by the imaging and Mammaprint. This could also be true if you were doing neoadjuvent chemo and not a participant in the trial - some oncologists use imaging to determine if the particular selected chemo regimen, given neoadjuvently, is working. The reason I believe they are using Mammaprint for this study is that is provides a broader genetic assay than other testing modalities and potentially more information on how these additional study drugs may work for certain patient populations. The site indicates that you will not be provided any of the lab results. Also, because of the nature of clinical trials it is important to understand - they will not tailor the investigational drugs to how you respond - they will not change drugs if the ones they give you do not have any effect - the purpose of studies such as this are to gather information on how these drugs perform - that is why they are given in addition to standard of care chemo agents, rather than instead of. Also, they do not necessarily steer you toward better drugs, it is that they have eliminated some of the ones that have underperformed as the trial goes on, so the ones left have a better track record. You will still be sorted randomly, it is just that there are fewer arms to be sorted into.

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  • LovesLoons
    LovesLoons Member Posts: 68
    edited October 2016

    SpecialK-- you said : "Also, they do not necessarily steer you toward better drugs, it is that they have eliminated some of the ones that have underperformed as the trial goes on, so the ones left have a better track record. You will still be sorted randomly, it is just that there are fewer arms to be sorted into."

    I agree, and I understood it that way, but people should read your description. It explains it better. I know what I'm signing up for-- I just didn't realize they get the non-working drugs out of some studies, and it sometimes is better to be in a study later rather than first-enrolled. Know what I mean?

    The extra tests that we will get results from are: Prestudy: The regular labs (chem, CBC, liver panel, etc), chest x-ray, breast MRI, EKG, echo, and core biopsies (2 of which I get results from, pre and at surgery). I did get a biopsy already, so this is a nice addition to get as an accuracy measure.

    Additional breast MRIs done during and after.

    On the pre-study biopsy they are doing MammPrint, TargetPrint HER2, Luminal Type, TargetPrint ER/PR.

    I called the coordinator to double check, and the only result we don't get is the 4-week core biopsy. The convo went: Me: What would that tell us if we had the info? Them: How the tumor is reacting to treatment. Me: Would that help us? Them: No.

    May sound blunt, but I understood it. I'm sure it is because the study doesn't change because of the results. I'm fine with that. That's the agreement I signed. It may not be right for others.

    They DO pull you out of the study if something goes wrong, for whatever reason. You can leave the study for any reason, even no reason, at any time.

    There are extra blood draws they do and don't promise results. That's the extra research specimen. I understand those too.

    I have a love/hate relationship with research. 0___0 Don't get me started. I suggest anyone read and understand what you are getting into and be sure you can opt out at any time.

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  • SpecialK
    SpecialK Member Posts: 16,486
    edited October 2016

    lovesloons - glad you have a completely clear picture and info - that is important. Whether enrolling in a trial later provides benefit and elimination of non-working drugs is dependent on the trial structure, but it seems to be of benefit in this situation because there were a large number of trial drugs initially. I have participated in a number of trials - but only one involving drug administration, a Her2+ vaccine trial - with only one drug used, and it was directly after treatment. Similar to ISPY2 in that it was an addition to standard of care, but I knew that I might get the placebo rather than the vaccine itself. I commend you for your participation - not everyone is willing to do a trial, but they are the best current way to provide advancement of treatment that benefits all of us. I was fortunate to have MRI pre-surgery, and Mammaprint was done on one of my biopsy samples, so I had that info prior to surgery as well. After surgery I had pre and post chemo PET scans, as well as two additional ones done in the years since. All of the information you can gather through this process is invaluable, it helps with peace of mind and decision making. Wishing you the best!

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  • LovesLoons
    LovesLoons Member Posts: 68
    edited October 2016

    Thanks SpecialK!

    I like that they will tell me if I am getting the new drug or not before I start so I don't have to wonder the whole time what I'm getting. (Apparently Mayo doesn't do placebo trials for my situation).

    It's easy to do the trials when there really isn't any downside. It is possible to not qualify for OTHER trials later, so people will want to think about that too.

    As an aside, I also was called in to be in a trial for their "new" ultrasound machine(s). I was paid for my time, I think $50 for each one. They did 3 of them, took maybe 45 minutes or an hour total. The study team was so nice! The main lady even hugged me after while she was walking me out. How cute is that?

    I'm leaving most of my body to science, mostly Lyme research ... if they still want it.

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