Just Diagnosed needing direction

romyles

I had an abnormal 1st mammo at 40.  I was asked to come back for a cone down and then told that due to the fact it was my 1st and there was nothing to compare it to we would wait the 6 months then repeat.  At the 6 month mark the microcalcs had grown and changed characteristics and I was then sent for stereotactic biopsy.  Results:  High grade DCIS sold type with central necrosis.  There was no receptor testing performed on the path.  On my surgical consult I asked if it would be done and I was told it "could be done" on the surgical specimen.  I seem to want it done---is that wrong?  I also have microcalcs in my uterus(probably fine but right now I'm not in a risking mood) so what if??  The area measures roughly 5.3x2.5x3 cm and the surgeon plans to do oncoplastic lumpectomy and reconstruction with sentinel node biopsy.  Thru most of my readings I am just shy of the 6cm goal with high grade.  I was told my survival would not be changed by having a mastectomy---I may have a recurrence but then it would be have the mastectomy.  I understand that if the path report comes back after surgery bad then it's back to the OR anyway and nothing lost under treating is pretty risky too.  I think my age was against me on it.  My looks are not my concern--survival and seeing that my kids have their mother is my concern!  I'm still dealing with not really knowing the extent of this thing also.  Did anyone have very low Vitamin D at diagnosis?  mine was 19 and I assumed it was the cause for my shear exhaustion.  I also am being worked up for lupus(or at least I was until cancer came into the picture) and my dsDNA was elevated on my labs---that usually indicates lupus but now I'm worried it's elevated as some kind of cancer marker---anybody have this issue?  Anybody with lupus and breast cancer?  Any guidance on how to make this tough choice on treatment options.  I am a nurse  and remember terrible things related to radiation----I'm not familiar with the way it works today as I have not taken care of a radiation patient in years---any thoughts on radiation?

Annette47

Radiation today is apparently (as I had no experience with it in the past) very different than in the past and according to my radiation oncologist carries much less risk of serious side effects (e.g. heart/lung damage, etc) than it used to, although skin issues are still pretty common.

I had 6 weeks of whole breast radiation and tolerated it just fine.  Some fatigue, but not so bad I couldn't function.  No skin problems whatsoever, although I did have quite a bit of swelling towards the end which has mostly but not completely resolved (I finished in March).   I had a much smaller area to take out though, so mastectomy was never really a serious consideration for me (especially since I have no factors that would make radiation particularly risky for me).   One thing to remember is that they can always try the lumpectomy and go back for a mastectomy if needed, but you can't do that the other way around.   Perhaps you can ask for a consult with a radiation oncologist before deciding so they can give you a clearer picture of the risks/benefits of radiation in your case?

As for the hormone receptors, while they can do it on the biopsy sample, they seem to prefer (at least they did in my case) to wait and test the surgical specimen.   What happened with me though is that the biopsy apparently had removed the entire lesion (as I said it was small) so they had to go back and test the biopsy sample to see the receptor status.   Really though, since they don't start hormonal treatments until after surgery, there's no need to know it right away.

Sorry your are dealing with this .... as a friend and fellow survivor said to me "Welcome to the club no one wants to join".

romyles

Thanks!  You are so right---I actually had that thought today--this is the club I never tried out to join!  I'm finding it difficult to talk to anyone other than someone that has been there.  I've learned a lot about breast cancer in a short period of time.  Sadly I was not aware that it was so common.  I go to a fairly large church with a few survivors but there is currenlty 1  with DCIS so that makes 2 of us and both of us know 4 or more and we live in a relatively small town.  With mine being this large I'm just nervous and kind of angry that I allowed the 6 month wait---but I can't start that game!

Ridley

Hi romyles - I just had a lumpectomy (for invasive ductal + dcis). It was my choice to have either a lump or mast. I went with a lump to start with as I didn't feel I was really informed enough to decide on a mast and whether I wanted reconstruction and if so, what type. In talking to my surgeon and radiation oncologist, both said lump was a reasonable choice to start with - we would not be burning any bridges, and we could see what we were dealing with. I didn't have the hormone receptor status until I had my final pathology from surgery.



As it turns out, I have multifocal cancer (10 small areas of invasive foci), so while we got clear margins, I may end up having a mast to reduce recurrence risk. But I don't regret my decision to have a lump first and take the time I needed to understand more about what I'm dealing with.



Can't help on your radiation or lupus question, but I can relate on the 6 month issue. I actually had a mammogram with a call back for compression views and an ultrasound 7 months before my cancer was detected -- nothing was detected then. I had some bleeding that led me to have additional testing that found the cancer. I definitely thought how the heck did I go from a clean mammo/ultrasound to invasive cancer in that short a time?



Good luck with your decisions