Diagnosed with DCIS after "prophylactic" mastectomy

kasey_ca

Hey! Received a major shock yesterday - I was called in to see my breast surgeon, expecting to have my incisions looked at and told my pathology was fine. Instead I was told that they found 8cm of grade 2 DCIS. I'm still in shock... yesterday I felt mostly relieved that I had gone ahead with the surgery even though I haven't been tested for the BRCA gene, and I knew that many felt it was a drastic decision. Today I just feel scared. I am 39. They didn't get completely clear margins (0.2mm from chest wall). I had a clear mammogram a month ago. I have requested to have an appointment with a radiology oncologist, a medical oncologist, and genetic testing, I think I would feel much more comfortable having radiation. Maybe tamoxifen? I am also wondering if more surgery is an option. Thoughts, experiences? Thanks!!!

LivinLife

I'm glad you requested referrals to the various specialists! Of course this is scary for you!! I guess I'm not understanding what led to the preventative surgery? On some level it may not matter at this point though I'm guessing there was some kind of concern, risk factor, etc. though you obviously were not expecting what was found. Hopefully some of the more knowledgeable folks will chime in before long for other feedback. Just want to send some emotional support your way for now....

kasey_ca

Thanks LivinLife... my mother was diagnosed with breast cancer at 50, and passed away at the age of 56. This was a long time ago now, 11 years, but it was hard to watch and I wanted to avoid that for myself (and for my young children). Otherwise, I would be having to go for a scan of some sort every 6 months (mammogram + us or MRI) and that didn't sound like a good option to me either. I was fortunate to find a surgeon who would agree to do the prophylactic MRI without the genetic testing. I was denied testing as I only had the 1 first degree relative affected... unfortunately I don't have any sisters/aunts/female cousins either but that doesn't factor in.

kasey_ca

I had my surgery on August 14th.. not long before you. How are you healing/feeling? I'm surprised at how well I feel now. I do wish I had known about the DCIS before my surgery, as no nodes were biopsied and I wish I had that peace of mind.

bcincolorado

Your breast surgeon can explain things further to you but you will need to speak with a medical oncologist and go over everything as well. Usually the doctors all coordinate together and determine the best course and if radiation/chemo/hormonal meds are best treatments.

I had no BRCA testing because we had no family history already and my grown daughter said she would rather not know risks because she would always worry since she is a worrier and we all know stress is bad for you. So I chose not to get it.

The did other tests though that will help the doctors when they make their recommendations to you.

The final decisions will be yours to make in how you are treated.

Best wishes to you.

LivinLife

Thankfully kasey_ca you had that surgery or can you imagine....?? It sounds like you will have a good team around you - important you are comfortable with each of them too though you will see about that. bcincolorad is correct you will have to decide how to proceed from here once you get their input on your specifics.... that is truly the most stressful part - the rest is just about taking each next step and walking through that...

As far as me I did very well through the 51/2 hour surgery and overnight in the hospital. I expected quite a bit of pain or discomfort during the 4 hour drive home though really did not have any. I did not use any narcotic medication once I left recovery - only Acetaminophen and Ibuprofen rotating every three hours.

My concern now are the drains. The P.A. from my surgeon's office removed 2 of the 4 yesterday even though one of those was below 30 for 2 days and the other below 30 for 36 hours. Today via phone the P.A. told me the other drains cannot wait to be removed until next week. She also did not forward the short note my local wound clinic needed in order for me to schedule with them for the removal. The P.A. promised me she would forward that first thing tomorrow morning. She said if the local wound clinic cannot get me in until late next week I am at risk for infection and need to be on an antibiotic. I understand and I more so do not understand why she just didn't take those drains out yesterday when I was there and why she did not send the note soon after I left her a message yesterday 5 minutes after my appointment with her stating the local wound clinic needed a written note transferring care of drains per se. Now I'm 4 hours away and not willing to drive 8 hours round trip for a less than 5 minute procedure. I'm also self-employed and just getting back to work - no work, no health insurance. I will take the one drain that is barely draining out myself if the wound clinic is not able to get me in first thing next week - they are always buried and schedule about a week out - I'm a frequent flyer there. The one drain that has been under 30 ml for 3 days now is barely putting anything out which really concerns me for infection. Sooooo just an fyi for anyone else reading this... I wish I would've pushed a bit more for her removing those yesterday when I was there.... she was pretty assertive about concerns about removing them and here we are just over 24 hours later.... unbelievable! You can read my thread to see how well everything else has gone...

I wish you the best and please keep us up to day on what's happening with you!

Beesie

kasey, I'm sorry about the shocking finding!

The good news is that with pure DCIS, there is no need to check the lymph nodes. And because of the lifelong risk of lymphedema after node removal, you really don't want to remove nodes unless necessary. So in that way, not knowing about the DCIS was a bit of a lucky break. Normally women who have a lumpectomy for DCIS do not have their nodes checked; should invasive cancer be found, a sentinel node biopsy is done as a quick second surgery. But an SNB can't easily be done after a MX, so women who have a MX for DCIS usually do have a SNB, not because of the DCIS but just in case invasive cancer is found in the final pathology. So not having nodes checked with a diagnosis of DCIS is not a problem and not at all unusual - it is only unusual for those who have a MX.

Normally after a BMX for DCIS, no additional treatment is given. The exception is when there are close surgical margins, particularly at the chest wall, as in your case. As you noted, the options are radiation or Tamoxifen (if the DCIS is ER+). Not everyone opts for additional treatment, but some do.

Here are some older discussion threads about close margins after a MX for DCIS:

https://community.breastcancer.org/forum/68/topics/876839?page=1#post_5564165

https://community.breastcancer.org/forum/68/topics/856402?page=1#post_5111070

https://community.breastcancer.org/forum/68/topics/856075?page=1#post_4986002

https://community.breastcancer.org/forum/68/topics/849320?page=1#post_4832588

https://community.breastcancer.org/forum/68/topics/847670?page=1#post_4809129

https://community.breastcancer.org/forum/68/topics/844927?page=1#post_4731204

Cowgirl13

kasey, my mom was also 56 when she died of breast cancer. She had been diagnosed the first time when she was 45. I was only 33 when she died. You know when I hear people going on about getting too old, I have no sympathy--like get real. I was thrilled when I turned 70--I looked forward to it for several years before it. And now I have less than a year and I will turn 75!

kasey_ca

So sorry for the late reply! My father was diagnosed with advanced liver cirrhosis last week.. and he doesn't drink, so especially shocking to me. He had over 6 litres of ascites drained yesterday. That was a whole lot of fluid in there! Now waiting to hear more about the underlying cause, and worried sick about him. Sometimes it's all a bit much.

How are you doing with your drains?? Hopefully long gone now. Mine stayed in for only a week, and I just had 2. Plus I only live 10 minutes from the hospital, I never really thought about how lucky that made me! Four hours!!! Things got so much easier without those drains. Good riddance to them!! That must have been so frustrating for you, I can't imagine.

I have seen the radiation oncologist now, and she said radiation would cut my risk of a recurrence in half. So I'm going to go ahead and go for it. She didn't recommend, or not recommend it. She said I'm in a bit of a grey area, and there are no clear guidelines on how to proceed. I will sleep better at night knowing I've given this my best shot.

Love to hear how you're doing now Livinlife... hopefully much further down the road to recovery.

kasey_ca

Thank you Beesie for your reply... your answer about the lymph nodes brought me a lot of peace. For some reason in my head, I was so focused on the fact that a lymph node biopsy was typically done in a mastectomy patient diagnosed with DCIS. Which made me so scared that we could be missing something. But your explanation made so much sense. I know that occasionally a diagnosis gets "upgraded" during surgery. I'm incredibly fortunate and there were no signs of invasion, or even micro invasion. In the end, the pathologist estimated that the DCIS was 12cm x 8cm, and the radiation oncologist that that this would have become invasive without a doubt in her mind. I'm nervous for the radiation, but happy that I can take an extra step to make sure this cancer doesn't recur. Thank-you for the effort you put into making the list of threads, I read through every one. It definitely helped me make the decision to go for the radiation. All the best.

kasey_ca

Cowgirl13... I was 28 when my Mum passed away. I am the same as you... whenever someone complains about getting old, I tell them that growing old is a privilege. It is. I've never felt so strongly that I have a guardian angel. Deciding to have the surgery was not an easy one, or even finding someone who would perform it without the genetic testing. Such a large area of DCIS (12cmx8cm) would almost certainly have at some point spread beyond my breast. I miss her every single day, and always will. But I catch glimpses of her in my own face, especially as I age, and in the expressions of my three girls. Take care

ShetlandPony

Kasey, brava for following your intuition about your body and catching that DCIS.

You said, “I was denied [genetic] testing as I only had the 1 first degree relative affected... unfortunately I don't have any sisters/aunts/female cousins either but that doesn't factor in.“ Yes, it does factor in. Limited family history is on the list of qualifications for testing. Your mom was affected, and there are no other close female relatives to look at, so there is missing information. Who requested the testing that was denied? If it was a medical professional who is not a genetics specialist, please try again through a cancer genetics counselor and specialist. I have found that when requesting various kinds of testing, it matters to the insurance approval or denial folks, WHO requests the testing, and how well that person understands the criteria as detailed in the National Comprehensive Cancer Network Guidelines. If you and/or your dear mother had premenopausal diagnoses, that increases the concern for checking genetic risk. Also be aware that there are genes other than BRCA that should possibly be looked at. Again, the genetics specialist should help with that.