Doctors are confusing me

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Twinmar
Twinmar Member Posts: 35
edited December 2014 in DCIS (Ductal Carcinoma In Situ)

I was diagnosed with DCIS almost 2 1/2 years ago. My tumor (found through a regular annual mammogram, US, biopsy) was .6cm and was found to be low nuclear grade - cribiform, no necrosis. I had a lumpectomy with good margins and followed up with a radiologist although my BS told me I probably wouldn't need any other treatment. My tumor was highly ER/PR +. The Radiologist thought I should have 7 1/2 weeks of radiation just to be sure (Of course, this is what they do- they like to radiate people - almost like asking a surgeon not to want to cut). My husband did quite a bit of exploring regarding the amount of radiation etc and we said OK. After the radiation (which by the way I had no side effects at all - my skin barely even turned pink and one of those weeks were all boosts) I was referred to an oncologist even though the RO said I wouldn't need further treatment. My oncologist asked me to try Tamoxifen - which I did and was on it for 1 year. At first, no symptoms other than I lost 5 pounds but I wonder if that was more due to worry than the drug. Eventually my skin dried out, my gums bled, my muscles started to twitch, I had painful muscle spasms in my toes, I had very vivid dreams, my hair got thinner and I was very very sad. With my oncologist's blessing I went off the drug. For my next 6 month check, I was given a new oncologist since mine had left the clinic. The first thing this doctor said to me was I'M GLAD YOU WENT OFF THE TAMOXIFEN - IT IS FOR PEOPLE WITH INVASIVE CANCER. She also put me on an annual mammogram plan. So six months later (last week) I saw another new oncologist - last one had also left clinic (this is a reputable cancer clinic) - the first thing he said was HOW ARE YOU DOING ON THE TAMOXIFEN (Geez don't they read your history)? I told him I was off the drug and he said I should go back on. Then he said YOU KNOW YOU DIDN'T HAVE CANCER...you had a pre-cancerous condition. He did an exam and told me to keep getting mammograms every year and come see him again in 6 months.

I am totally confused. I know I had cancer - I had cancerous cells in my body and that is cancer no matter where it is located or how big it is - it was just fenced in and hadn't busted out yet but it was cancer. Sometimes I think I was over treated and other times I think I didn't do enough. I had no symptoms whatsoever...there is no history of breast cancer in my family - I am the first - not something to celebrate. I was 60 at diagnosis.

Has anyone else had doctors whose opinions differed so drastically. I try not to just ask Dr. Google because he never says what I want to hear. 

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  • april485
    april485 Member Posts: 3,257
    edited December 2014

    First, relax and breathe! If I would guess, I would say most doctors call DCIS a precancerous condition although the cells are malignant. But, make no mistake about it. Treatment is the same as for most early stage cancers with the exception of no chemo. Please know that you did all that you could for what you were diagnosed with and best to you moving forward!

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  • Jelson
    Jelson Member Posts: 1,535
    edited December 2014

    I read your post and all I could think of was The Island of Misfit Toys - except in your case it is the Center of Misfit Cancer Specialists.

    it sounds like the first doctors were by the book, throw everything at it. Your RO really had no business advising on hormonals. Your first oncologist put you on tamoxifen, standard treatment but listened to you and took you off the tamoxifen. Your second oncologist was out in la la land. Tamoxifen is recommended for both pre-menopausal women with either invasive or non-invasive cancer ie DCIS AND for post-menopausal women with DCIS.

    There is a controversy about whether to call DCIS cancer or pre-cancer - there is no debate that some DCIS doesn't evolve into IDC and that doctors can't tell which will and which won't - so they know they are over treating some women and that women are getting upset and treatment unnecessarily - but changing the name from non-invasive to pre-cancer doesn't change the FACTS. -What was the point in throwing that out in the first meeting with a patient who has finished active treatment????? It would seem to me that your newest oncologist - who was actually trying to convince you to start back up on a treatment at the same time he was downplaying your diagnosis, kind of counter productive!! sounds like a smart ass who totally unnecessarily said something provocative- like and by the way you never even had cancer - but take this drug that caused you problems and come back in 6 months and don't forget your annual mammogram?? idiot.

    You have every right to feel confused - but this is their problem, not yours. With any luck, this newest MO will be history by the time of your next appt.

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  • water804
    water804 Member Posts: 6
    edited December 2014

    Personally, I am fairly recently diagnosed- had lumpectomy on Oct. 30 of this year, now still trying to understand the next steps, and have yet to get a satisfactory answer from any doctor, surgeon, oncologist, about what actually needs to be done, and why. They seem to want to treat everything maximally, just in case. And yet, there is no information available about what happens if they don't. It is extremely frustrating, and I have been going through a very difficult, frustrating time. Sounds like you had similar frustration. There is no reason it should be so confusing, but that seems to be the state of things. I hope you are doing well and you find helpful people and answers that work for you.

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  • Twinmar
    Twinmar Member Posts: 35
    edited December 2014

    Thanks for your replies.  I guess I am doing well although I have to say I felt a lot better (physically and emotionally) before my diagnosis.  Other than being a bit tired (my Vitamin D level was at 15) I was feeling well when I was diagnosed in May 2012.  The day after my lumpectomy my hands and feet began to burn/tingle.   Some days are good; some days are worse.   I have been through all sorts of tests - by my GP and by a neurologist and they cannot find anything wrong with me - for some reason this just happens.   It's not bad enough for me to take medication (although I have done so at night in the past).   I'm tired of doctors and medication.   I think it's strange this started the day after my surgery.    I know I was allergic to adhesive tape (found that out after my biopsy when my chest turned bright red and itched) so after the lumpectomy I had paper tape so my skin was fine but then I got the neurapathy.   Maybe it's a coincidence or maybe I was allergic somehow to the anesthesia or picked up some other strange affliction while in the hospital - it was only in / out surgery so I was there for a few hours and recovered nicely.      I guess I should be thankful for what I have and leave it at that.

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  • water804
    water804 Member Posts: 6
    edited December 2014

    Ok- that is so weird that you mention your hands and feet tingling and burning- I had exactly the same thing happen after my surgery. Since I am type 1 diabetic, I presumed this was due to diabetic neuropathy and just happened to coincide with the surgery, maybe because I spent a lot of time laying/sitting down, was stressed, etc. So I didn't ask anyone about it- I figured I would talk to my diabetes doctor about it later but I felt overwhelmed by everything else and so I put it off.

    This only happened for a few days, in my case, and then it went away. Its good you had it checked, and it is mysterious. Now I am wondering what that actually was!

    Thanks for posting about this- as always it leaves more questions than answers, but now I am glad to know this wasn't just me. Hope you are doing well, take care.


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