Newbie with questions about DCIS

jmemama

Exactly one month ago today, I was diagnosed with high grade DCIS. I am 37 years old with two kids ages 7 and 3.  I have two tumors. The first one is ER/PR neg and her2 pos. The second one is ER/PR pos and her2 pos. I have had two biopsies and one MRI. The first biopsy was on the two spots on my left breast and the second biopsy was on my lymph nodes b/c I had 2 nodes that *lit up* on my MRI. Those came back neg for cancer. I am having a double mastectomy in 13 days (Aug 31). My surgery will be exactly 6 weeks from the time of my dx and the wait has been torture. My left breast feels really sore all the time (much more so than it was before I was dx) and I can't help but be aftraid that it will go invasive before it is removed. It just feels like it is affecting a much larger area than it did before I had the biopsy. I know that if any invasive components are found during my surgery it could drastically change the outcome in terms of my treatment afterwards, and I can't help but think that will happen. Is it possible for DCIS to become invasive this quickly? I have tried to search topics on this, but the info is sometimes confusing and seems like it's all over the map. Can anyone help? I wish there was something solid to go on that would ease my mind, b/c I just want to know that I won't need chemo or radiation. If I had my choice, I would have had the surgery a month ago. *sigh*

proudtospin

ok, so try to calm down, things do not change that quickly and DCIS is by definition, not invasive.  Likely the biopsy is causing some tenderness, mine have in the past.  Your surgery will come out with a final more complete diagnosis.  Everyone is dif so my suggestion, get the best surgeon in town or go out of town if you need to. this it the time for the best!

I know it seems a long way from now but it sounds like you are doing the right thing.  Now stay busy between now and then. 

deep breath, little yoga is good

LAstar

Any research I've read about DCIS becoming invasive is on the order of years, not weeks.  I wouldn't worry about it becoming invasive before you can be treated.  Sometimes some small invasive cancer is found during surgery for DCIS but the thought is usually that it was there already.  Often chemo is not recommended when it is small and found early.  I was really sore after my biopsy, especially 3 weeks after. There will be inflammation and pain from scar tissue formation.  Waiting 6 weeks for your surgery is not uncommon or excessively long.  I was diagnosed in March & had a lumpectomy in April, a re-excision in May, and a BMX 5 weeks later in June.  No invasive cancer was found!  I've read that some women feel that having their MX sooner made the whole thing feel rushed, so maybe there is a silver lining in having a few weeks to digest your diagnosis and treatment.  My impression is that, in the vast majority of cases, BMX for DCIS requires no chemo, radiation, or AI drugs.   Try to focus on the excellent prognosis that you have with DCIS and BMX.  I never wanted a MX but, now that it is behind me, I have much greater peace of mind about my future.  Best wishes!  

CLC

http://community.breastcancer.org/forum/68/topic/790992?page=2#idx_31

If you follow this link, you will find a wealth of information about DCIS.  There is a wonderful woman here that does a fabulous job pulling together all of the latest information on DCIS and explaining it in easily understood terms...her posting name is Beesie.  You may find some information there that will help you.

I found the wait for my mastectomy to be very stressful...I cried so many tears...mourning the loss of my breasts, mourning for the loss of being innocently in denial of mortality, plain old fear, resentment, anger, gratitude to my family and friend for such immense support, a new crystaline view of my life.  What a stressful roller coaster.  Do your best to treat yourself kindly...do the things that make you feel good.  If ever there was an excuse to indulge a bit, waiting for a mastectomy is it.  I personally treated myself to my first ever full body massage two days before surgery. 

Once you are armed with your final pathology report, you will be able to go into decision making mode again, but there is little reason to worry about the what-ifs.  You will know soon enough.  Easier said than done...but try to slow your racing mind down...

Hang in there...and best of luck...

Claire

jmemama

I'm pretty sure the HER2 status is what is freaking me out a bit. Does HER2+ indicate that it could become invasive more quickly? If my final pathology after surgery comes back with microinvasion, does that typically mean that treatments would then be required? I am very thankful to live in an area where I have access to a very experienced and highly respected breast surgeon. I have no doubt that a BMX is the right choice for me and will definitely give me the best chance. I know I should be thankful that I caught it early b/c many are in a much worse position than I am, but I am still scared to death. Im so happy to have found this group. Thank you for your support.

froggy12

jmemama, I know exactly where your coming from! It was 6 weeks between my lumpectomy and my bmx, it seemed like forever and the emotions were crazy! I didn't have the nodes biopsied until the bmx. I was also worried, but nothing changed during the 6 weeks. I am now 3 weeks post op and now getting weekly fills to my TE's. I do not have to have any chemo or radiation and probably not even any harmone supression! Try your best to relax, even plan a get away to take your mind off of everything! I will be praying for you!

liefie

Jmemama, you will get through this although it is hard. It is easier said than done, but worry won't change the outcome. It only upsets you, so try to take your mind off this by doing nice things with your family, and by trying to keep things as normal as you can.

I was diagnosed simultaneously with DCIS, as well as IDC, as well as early stage endometrial uterus cancer. Since December 29, 2011 I have had two major surgeries with breast reconstruction, chemotherapy and radiation which finished a month ago. This all happened in six months' time. When I look back, I can't believe everything that went down. I also hated the idea of chemo or radiation, we all do, but my path report after surgery indicated lymph node involvement, which changed everything.The main thing is that I came through it, and so will you. You do what you have to do. One day at a time - it is a marathon, not a race. Best wishes for a good outcome!

jmemama

Surgery in 6 days. Getting very anxious lately. I am getting a BMX with sentinal node biopsy. Will this put me at risk for Lymphedema? If so, I may pay a visit to that board. Also, can someone clarify for me (just thought of this right now) Does  the sentinel node biopsy involve actually removing the nodes? Or do they just biopsy them and remove them if necessary. I'm confused. Sounds ridiculous that I didn't get that question answered before. I try to think of everything, but it's hard when i'm not thinking clearly.

Thanks for all the previous replies and trying to ease my mind about all this. I'm kind of in that place right now where I am scared to death. It's just the anxiety creeping back in, i'm sure. Unfortunately, my psychologist is out on medical leave (she specializes in counseling breast cancer patients) and there is no one else available that I am comfortable seeing and she is the only one that has the BC specialty.

BLinthedesert

jmemama - sorry that you are having to go through all this, it is such an anxiety provoking time.  

They will remove your sentinal nodes, because once they remove the breast tissue they won't be able to find the "sentinal" nodes anymore.  This will put you at risk for lympedema, but not everyone gets lymphedema.  You should ask your surgeon if they have any nurse specialists that can help you after your surgery, there are massage therapies that can help, and they can help you reduce your risk of ever getting it.

Good luck to you ... 

KellieDenise66

Dear Jmemama,

Thanks for posting! I too was just diagnosed with DCIS July 30 and have also opted for BMX . Unlike you I still do not have a surgery date scheduled! I know the anxiety that goes through your mind as the time passes and worries of how it affects the potential cancer growth. I'm jumping out of my skin! Have two young children as well. All the doctors I've consulted with have told me to stay calm that time is on our side. (easy for them to say) meanwhile we are terrified!

I'm so glad you have your surgery all set. I'm wishing you the very best and extra prayers for peace of mind! As all these other smart ladies have mentioned, the big questions will all be answered with your final pathology. This unfortunately is out of our control but it sounds like you have great doctors and will be on the other side of this before you know it! Hopefully I'll be following closely behind you! Please keep us posted. This community is truly keeping me from going over the edge. Quick healing thoughts coming your way!

Jamie0712

@jmemama

I was diagnosed DCIS on July 26th. I am still in the process of deciding about bmx. I am 22 yrs old, so losing both breast at this age is a lot to take in.. However, I think thinking it through it might be the best choice so I don't need to worry again. I am pretty sure I will go that way. I talked to my doctor, he said I should have treatment within 6 months. I am thinking maybe November. I hope your surgery went well

jmemama

I am 9 days post surgery and everything has gone just perfectly. My pain and nausea was managed by a scopolomine patch, a nerve block, an OnQ pain pump, and Tramodol. I have experienced very little pain and zero nausea throughout the healing process and I only stayed in the hospital one night. When the plastic surgeon placed my expanders, he was able to put in over 200 cc's so when I woke up, I already had decent breast mounds. I am naturally a DD so that was a big deal to me



And the best news of all.. My sentinel node bx came back negative for cancer and only 3 nodes were removed, and my final pathology report came back 4 days later, revealing that all the cancer was dcis, there was no invasion, my lymph nodes were negative, and they got clear margins. They said I am completely cancer free and I need no additional treatments. We are euphoric. It's really the best news possible.

KellieDenise66

Dear Jmemama,

I am sooooo happy for you! What a relief! The fact that you're healing well, your pain was controlled, and VERY best of all your pathology couldn't be better! Thank you for sharing, I'm scheduled for my BMX 9-27 and needed to hear some uplifting news. Please continue to keep us posted!

~kellie

NSJ2

Awesome news, jmemama!  So happy you're doing so well.

NSJ2