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Dawny74
Dawny74 Member Posts: 7
edited February 2019 in Diagnosed and Waiting for Test Results

On Monday, 2/4/19, I was informed of two cancerous masses. That same day, I saw my primary who was still convinced that I did not have inflammatory, but did have the invasive intermediate grade ductal carcinoma.

The next day, I saw the surgeon, who also was convinced that I didn’t have inflammatory. That afternoon, I saw the oncologist and he is convinced that I DO have inflammatory - it said it looks textbook. 😢

So inflammatory, as well as two masses. I’m petrified.

Next week I have a PET and MRI. I’m supposed to be having skin biopsies and lymph node biopsies, as well as a genetics test.

The oncologist said at this moment it’s a port, chemo, then surgery, then radiation. It looks highly likely that a mastectomy is in order for at least one breast. If the genetics test comes back with a mutation, then bilateral mastectomy and hysterectomy.

The oncologist is at a cancer center, but the surgeon is not an oncologist. Should I be looking for one who does both? My family is insisting on me attempting Mayo Clinic, but I don’t even know how to get in there.

All doctors insisted that I still visit my son in Colorado, who is getting ready to deploy for the first time. So I’m in Colorado attempting to keep myself calm and sane, but I am sooooo scared

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  • rbreny
    rbreny Member Posts: 15
    edited February 2019

    So very sorry you are going thru this. When you have surgery you will find out exactly what type you have. The surgeon says IDC and I think he would know more than the oncologist. Please take one step at a time. I know that is difficult since this part is the worst. Once you have a plan in order I guarantee you will feel better. Best of luck to you and keep us posted.

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  • Polly413
    Polly413 Member Posts: 124
    edited February 2019

    This is the worst part of it in my opinion -- when you do not yet have a solid conclusion as to what exactly you have and therefore you have a general but not specific plan of treatment. I don't agree that in general a BS is more likely to be right as to diagnosis than is a MO. But I hope in your case, the BS is right and you have regular IDC. I am glad you found this site -- we are here to support you. I have been a reluctant member of this unhappy club for almost 2 years -- been through chemo but it was after surgery. I like and respect both my BS and my MO but they are at different initutions which is sometimes inconvenient and sometimes works in my favor. Their separate advice kind of supplements each other so its helpful to me. Don't forget that you can get a second opinion from a different MO if you are uneasy about advice you are getting. A hug and good wishes from Polly.

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  • windingshores
    windingshores Member Posts: 704
    edited February 2019

    I had a surgeon who did breast cancer exclusively.  As for oncologists, there were contradictions in my pathology between biopsy and post-surgery results, so I ended up with three post-surgery opinions from oncologists.  Interpretation of actual pathology tests were different from hospital to hospital. I just kept going until I was comfortable.  This will probably not be necessary for you. But it is wise to try to get into Mayo even if it is for a second opinion.

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  • Shellsatthebeach
    Shellsatthebeach Member Posts: 316
    edited February 2019

    I got a second opinion from Dana Farber. I decided to get surgery at that hospital and got my chemo and radiation treatments at a local university hospital. Some insurance will allow you to do this, but you need to do some investigating. I wish you luck.

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  • Salamandra
    Salamandra Member Posts: 1,444
    edited February 2019

    I'm so sorry. This part is so stressful.

    "Getting in" to the hospital might be as easy as calling and following their intake procedure. For MSK, it was providing some basic biographical and contact info and getting my mammo/US and biopsy results sent to them.

    Wishing you the best for as smooth a treatment and recovery as possible!

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  • edwards750
    edwards750 Member Posts: 3,761
    edited February 2019

    I don’t agree either that a BS is more likely to be right. Mine wasn’t. He staged me wrong - not a big deal -from 2a to 1b per my MO. Also he said I would get chemo because of a micromet in my SN. Not his call. The MO ordered the Oncotype test to help determine treatment. My score was 11 - no chemo. The MO typically has the last word.

    Diane

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  • hapa
    hapa Member Posts: 920
    edited February 2019

    I got into Mayo by clicking the "request and appointment" button on their homepage and filling out the form. Someone called me the next day. It was around Christmas time so I didn't get an appt for two weeks, but I was in treatment a week after meeting with my MO there. Mention that you have a positive biopsy and things will move more quickly. I would also mention that it's IBC, as that needs to be addressed even more quickly. You will need to get them your test results before your appointment, along with electronic copies of any imaging you've had. Once the ball gets rolling at Mayo, there's nothing else for you to do except show up for appointments. Being a patient there is easy.

    The online request for appointment also worked for MD Anderson, btw. I went there for radiation.

    Good luck!

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  • Dawny74
    Dawny74 Member Posts: 7
    edited February 2019

    Hi everyone,

    Today I have a PET scan and tomorrow an MRI. Probably the skin biopsy next week.

    I’ve been looking into Mayo, obviously I’ll have to travel...but I don’t know which one to go to. I’m in Illinois.

    I have bad teeth from medications due to rheumatoid arthritis and my oncologist rudely told me that they were horrible and need fixed before chemo.

    Having what they think is IBC, along with the cancerous masses, I don’t know how to fix them fast. My insurance only covers so much. I don’t have time to waste with IBC, but I don’t want an infection risk eithrr

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  • leftduetostupidmods
    leftduetostupidmods Member Posts: 620
    edited February 2019

    There's a big difference between a BS (breast surgeon) and a BOS (breast oncology surgeon).

    The first is used to breast surgery but their curriculum and expertise and didactical formation is mostly in cosmetic surgery, and even if they performed some cancer-related surgery, their specialty is not cancer, while the MO is specialized in treating cancer, specifically, no matter of the type.. The MO "trumps" the BS.

    The BOS has a specialization strictly in breast cancer, more in depth than the MO who is a general cancer specialist. In this case, the BOS "trumps" the MO.

    I hope this throws a better light on what you need to look for, for you.

    In my case, I refused to have a general surgeon or even a general breast surgeon. I went instead for a breast oncology surgeon. I was fortunate to be squeezed in to one of the best in our state (he used to be the director of the John Hopkins Breast Institute) - well I'm quite pushy, to be honest. Even if my MO is a very good doctor, and he was the one who was overseeing my treatment, the treatment itself was put in place and directed by the "Great Poobah" BOS.

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  • hapa
    hapa Member Posts: 920
    edited February 2019

    If you can afford to travel, I recommend MD Anderson for IBC. They have special support groups for IBC patients, and I got the impression that they do a lot of research in that area. They are not as easy/efficient as Mayo though and it can take some effort on your part to get things moving. Sometimes the wait times for appointments are just ridiculous. If you want to go to MDA and aren't getting the response you need from them, I'd ask another doctor to give you a referral.

    What you want in terms of doctors is a breast oncologist and a breast surgeon, or at the very least a surgical oncologist. You will get both at Mayo or MDA. Mayo doesn't give their doctors such specific titles, but there will be oncologists and surgeons who specialize in treating breast cancer. Find out who those doctors are and request them specifically. There should be some indication on the Mayo website which doctors are affiliated with the breast center. If you don't specify, scheduling will just book you with whomever. But IMO if you're going to the trouble of traveling, you want to be seeing the best doctors.

    If relocating that far away for treatment turns out to be too much of a burden, pretty much any NCI Cancer center will give you great care. You can find one closer to you here:

    https://www.cancer.gov/research/nci-role/cancer-ce...

    If I were you and could go anywhere, it would be MD Anderson. Just my $0.02.

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