Another DCIS on opposite side 3 years later ... now what?

backyardbirder
backyardbirder Member Posts: 1
edited March 2015 in DCIS (Ductal Carcinoma In Situ)

I am new to this forum.  In 2012  I had DCIS, right breast 2cm intermediate grade HER+/EP-,  and had partial mx followed by radiation. In 2015 I had an MRI showed DCIS, left breast 5cm intermediate-high grade EP+.  Had partial mx 2  weeks ago. Did not get clear margins, but almost, surgeon thinks one more re-excision does it.  Then radiation TBD after.  After meeting with the oncologist yesterday, I am questioning if I am making the right decision for partial/rad again, though I was perfectly comfortable with this 3 years ago.  Oncologist recommends Tamoxifen after radiation,.  Oncologist thinks I personally have a 20% chance of another cancer, and Tamoxifen would lower risk to 10%.   But I have this sense that I won't tolerate it well because I already have gone thru years of hot flash and other issues that were pretty major, from hysterectomy(uterus only) 19 years ago. 

So ... I am getting stressed out now, wondering if I would be better off with a bilmx even though none of the Drs. recommend it ... including oncologist, surgeon, and the team that my clinic assembles  to review together all BC cases (consists of a BC expert, a BC specialist/surgeon, oncologist, radiologist). I realize the data shows there is no long-term difference in the outcome whether DCIS treatment is lumpectomy/radiation or mastectomy, but still I wonder.

??? Any thoughts ???

Side note: when I had DCIS 3 years ago, Dr. said don't use natural progesterone cream any more. I had used it for years due to aforementioned hysterectomy and resultant issues. I wonder if it actually protected my from EP+ cancer and after 3 years of stopping, EP+ cancer occurred. I feel that my hormones were in a state of imbalance - E > P, after my hysterectomy, before I used the natural progesterone cream.  I wonder if I should resume it. 




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Comments

  • Annette47
    Annette47 Member Posts: 957
    edited March 2015

    I don't know anything about the progesterone cream one way or another, but my suggestion to think about is this. You can always go back later and have a mastectomy, but once the breasts are gone, they are gone, so if you have any doubt and have the option, I would hold off.

    Many people take Tamoxifen without experiencing significant side effects (they just don't usually post on these boards!). I myself have been on it for almost 2 years and have mild hot flashes, some annoying vaginal discharge and minor other issues (occasional leg cramps) but nothing bad enough for me to not want to stay on it. What my oncologist told me at the time, was that the “quality of life" side effects (the ones I have seem to be the most common) go away once you stop the drug, so it is possible to give it a trial run and see how well you tolerate it (incidentally the more serious side effects such as DVT are very rare). If you are miserable, you can always quit (and perhaps then think about going for the bi-lateral mastectomy), but then you will know that you tried and not have to wonder “what if”.

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  • Donna-Dew
    Donna-Dew Member Posts: 264
    edited March 2015

    Hello backyardbirder, and welcome to BCO!

    I had some similar treatment decisions to make, and honestly it really does depend on the person. Everyone has a different story, history, and a personal gut feeling. For me back in 2012, the first plan was for a lumpectomy and radiation. Simple and let's get this done! But when the BS could not get clear margins on the anterior side, a larger excision was not possible, so my choices were boost radiation or mastectomy. My radiation oncologist recommended the mastectomy because of my family history (mom and maternal aunt both had BC, both are free and clear now), meanwhile my BS encouraged me to think of the radiation treatment because she felt there is so much over-treatment with stage 0 BC and at 48 yrs old I deserved to have breasts for a while longer yet. Well I knew in my gut, the right decision for me was mastectomy - I tend to be an anxious person by nature so I felt that this decision would close the matter more securely for me. Absolutely I have had some emotional times since the mastectomy but still no regrets about that decision. Like you, here I am 3 years later and now my left breast has DCIS. This time the area is more extensive 6cm x 4cm x 6cm. The BS recommended mastectomy and SNB, and I am scheduled for the surgery in a few weeks. With both breasts gone, the chances of getting breast cancer again are 8% (according to the BS) though I have seen a statistic of 1-2% being quoted in some literature and here on BCO.

    Knowledge definitely is power and helps so much with decisions, I found the permanent post written by Beesie posted at the top of this DCIS forum particularly helpful. BCO is a great place to learn the facts, to hear others' stories and to share yours. You are not alone in this! Hope you will let us know how you are doing!

    PS. I am a backyard birder too!

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