When Doctor's Disagree!!!

Hi Mouche:  This is a very difficult situation and one that I too experienced, but for a totally different reason.  After my mx, I had a very small positive margin due to the fact that I had very small breasts and there was very little tissue to work with.  My bs insisted that I still did not need radiation, but I could not stand to leave it at that and after a lot of research and soul searching (because it really is about what you can live with), I decided that in my case, the radiation would give me peace of mind.  This was not a decision I arrived at lightly, as the possible SE of radiation also scared the beejeezes out of me.  My RO supported my decision only in that IN MY CASE, there were some studies that suggested that I would benefit from radiation and if I was the type that needed to know that I had done all that I could, then this was how I should proceed.  I agonized over this decision for a number of weeks.  I am now very satisfied with my decision. But there were also just as many studies that suggested radiation was not really needed after a mx.  Although I hated the idea of radiation, in my heart, I always knew that I would have them. 

Your situation is quite different, so my story is irrelevant except for the struggle to make a decision, especially when drs disagree.  The research also supported both positions equally! 
Good luck with you decision and it does get easier once you have made up your mind.  (((((hugs))))) 

Mouche - I had the same problem with my doctors.   My diagnosis was the exact same as yours.  My surgeon, after the lumpectomy (with good margins), said I probably needed no further treatment but talk to the radiologist - he of course, insisted I needed 7 weeks of radiation-the last week with boosts.   I asked my bro-in-law who is a surgeon at Mayo if he thought it necessary and he said it was standard treatment so I went ahead and did it (w/NO side effects).   After I was finished my radiologist said I needed nothing more but go talk to your oncologist.   She decided I needed Tamoxifen.   I started it and had too many side effects to finish.  I quit a year later.   I do think I was probably overtreated but I was so scared and upset at the time that I thought they knew best.  Once diagnosed my twin went to her gyn and asked if she was more at risk.   Her doctor told her that they (a smaller medical community) would do surgery but probably not offer any other treatment. 

My sister-in-law had my diagnosis 20 years ago and had the same radiation treatment-but no hormonal therapy.   She was diagnosed two years ago with lung cancer (small spot) related to the radiation.   I realize things have changed a great deal over 20 years but that's frightening to me as well.   I had no history whatsoever in my family and was 60 when diagnosed - very highly er/pr positive.  I just hope I made the right decision in agreeing to the radiation.  

Each of situations is so unique.  My DCIS was small, but it was Grade 3 and my margins all the way around were only 1mm.  That still frightens me (I'm small, not a lot of tissue).  I am only 46 and then I'm ER+, but PR-.  Still considered +, but I've read it may not have the same full effect as someone who is fully ER and PR+.

However, what I wanted to chime in on.  I go to MD Anderson and I asked about the 10 years as the study was making full steam in May.  I went on Tami almost a month ago (knock on wood, no SE's).  My oncologist said the change from 5-10 years was based on one study and as an academic hospital they are not going to change the protocol based on one study.  If in the next 5 years more come out, I could be on it for 10 years, but for now it is 5.  

So certain area's standard of care, but there is still a lot of gray area.  1mm margins for many is too close?  

Ladies,

This has been a very helpful thread.  I am in the same situation with my doctors.  My surgeon said I only really needed tamoxifen, but to see a radiologist and an oncologist.  Both of these doctors were emphatic that I needed RT, as well.  I am a reader/researcher, so I've looked at multiple articles about DCIS.  But with the mixed advice of my doctors, I am still left with a huge sense of unrest - which I don't really need right now.  

I did decide to start RT.  I have had three treatments.  My team gave me all the info on possible side effects that could develop after 2-3 weeks: pink/red skin, itching, achiness in the treated area, minor swelling, and fatigue.  Well, I am having all of that now! In fact, my breast felt like it had a slight sun burn after the first treatment. This is causing me to second guess my decision again.  What if I am causing myself all of this discomfort (and possible future issues with radiation) when I didn't really need it?

I am also worried that I have just read so much that some of this is psychosomatic. To top it all off, because I need to start tamoxifen, I have to go off my Zoloft.  My family and friends are totally supportive, but they have no idea what I am going through.  My husband initially sided with the surgeon, but now I think he is afraid to say much of anything.

Here are my reasons for choosing RT:

I found my lump around May 1st. I couldn't tell much unless I was laying down. I hadn't had a mammogram since 2011.  Up until then, they were always clear, and I had no family history.  That means this started and grew to something I could measure in three years.  My doctor did a physical and breast check a year ago and didn't notice anything.  I think the lump was easier to detect by the end of May when I saw my regular doctor.  He acted immediately, and I had a mammogram, ultrasound, and biopsy by the end of the week.  The lump was out by the end of the next week. 

The first biopsy caused a lot of bleeding and bruising, but came back benign.  That radiologist said he wasn't really sure what he was looking at and that the bleeding prevented him from getting a needle sample.

I had a lumpectomy of a large, papillary tumor with DCIS and some LCIS.  The entire lump was about the size of a golf ball by this time.  I can tell you, I did not have a golf ball in my breast six weeks earlier (perhaps the biopsy caused swelling).  My surgeon said he hadn't seen anything like it - big with a lot of vascularity.  However, the margins were completely clear and there was no necrosis.  The pathology report lists it as 2.7 cm. He is confident that it was totally removed.

My husband and my surgeon think that because the margins were clear and I have no family history I would be better off with tamoxifen and regular check-ups.  And, IF anything comes back I will be getting a mastectomy, anyway.  My radiologist and my oncologist say that it is a clear case for standard treatment.  I finally decided that because it was larger than most and it grew within three years or less, I would go with the standard treatment.

Thank you for reading this whole rant of a post.  I know this really has two issues: RT effects and treatment decisions.  However, I would be thrilled to have feedback on one or both. I really need some reassurance.  Thank you.

wyowild, did you go to a  general surgeon?  Or how did you come upon the surgeon you used? I had a lot of bleeding from my biopsy and ended up with a large hematoma that was removed during my lumpectomy.  I can't imagine a 2.7cm grade 2 tumor not having radiation?

My tumor was fairly small, the bigger issue for me was that it was grade 3, small margins, near my chest wall and I'm PR- which seems to put me in a category with a more aggressive tumor.  I ended up having to do 7 weeks of radiation and 2 of those were boosts.

The imaging center where I had the biopsy gave me a referral to a breast surgeon, etc.  But I had a friend who had just gone through this and asked her who she had used.  She went to MD Anderson and I went there and have had a multidisciplinary approach that I think benefits any and all cancer patients.  Everything is under one roof, your team works together and if there is any question about treatment it goes to the board.

RADS was not to bad and amazingly I am normally hypersensitive to drugs, but have had virtually no SE's with Tamoxifen and have now been on it about 6 weeks.  I take it at night and was having insomnia, but MO NP said that isn't normally an SE and we (both of us) attributed it to my my mind not being about to shut off.  She said to take .25mg of Benadryl before I got to bed and that seems to be doing the trick.

Good Luck!