High grade DCIS - mastectomy - scared.

sunshinegal · October 2010

Hi there. I am new to this board and am hoping to get some encouragement and perspective from others who are walking this path.

I was diagnosed last week with DCIS. I am 36 and am in otherwise good health. It is a large tumor in my right breast that will require mastectomy. My pathology report includes a note that reads: "A small focus at the tip of one core demonstrates possible invasive cells however this focus is no longer visible on sections obtained for the special stains. Immunohistochemical stains performed...fail to demonstrate evidence of invasion or vascular invasion." I also had an FNA done on a lymph node that looked suspicious; it came back negative. I saw a surgeon (Dr. Karp @ Lahey in Burlington, MA) who explained that he would perform a sentinal node biopsy at the time of surgery; if sentinal nodes come back negative they can do simultaneous reconstruction. He also said there may be invasive cells in the tumor but we won't know until after they remove it. Apparently I have a fairly aggressive type of DCIS.

I am pretty scared. I am leaving tomorrow morning on my honeymoon (got married yesterday!) and am not sure how to keep everything in perspective and just enjoy this time together. The surgeon told us to go on our honeymoon and we'll do surgery when I'm back.

My brain goes to the worst case scenario and I wonder things like: what if the biopsy just missed all the huge invasive cells? Every time my breast aches I think: are the cells multiplying? How bad could this be - what stage could I be at? The tumor has strongly positive estrogen receptors and progesterone receptors... did taking birth control pills contribute to this? How could it have gotten this large in just one year - did my gyn miss this at last year's annual exam?

We did not tell our families this weekend, as we couldn't bear the thought of ruining our wedding celebration. We plan to tell them as soon as we're back from Hawaii. My mom was herself diagnosed with Stage 1 IDC this past summer; had lumpectomy and radiation and seems to be doing well. Due to family history, she had BRCA1 and BRCA2 tests done - both were negative.

I guess I'm not sure what specific questions to ask...I think right now I just need some encouragement about what I'm facing. I guess the bottom line is...I'm afraid this is going to kill me and that REALLY REALLY sucks because I just met my wonderful husband 18 months ago and we've just started our life together.

helenap · October 2010

take a deep breath... i too was diagnosed with agressive grade 3 with comedo the worse kind.. but it was small and removed with my bioposy so when the lump was done, i had lots of clean margins... i am older so mammosite radation worked for me. we are all a little different and people respond differently. i have been on a hormone drug tamoxifin with no ill effects, others have many issues..

obtain as much information as possible, review the discussion boards in this website, talk to people. get advice and there is lots of infomration out there.. fear is the worse and we all experienced that at diagnosis.. it is something that changes our lives forever.. one person put it quite well, in that they can remove the cancer but it stays in your heart and brain for a long time afterwards. we just begin to manage it.. so that it doesnt control our lives.. but be diligent, this is an awful disease.. good luck, post often, go and see the surgery doctor, the radiation doctor, the oncologists or hormone doctors, i saw them all before I had surgery... it was most helpful..

nolookingback · October 2010

Congratulations on your wedding and the start of your new life. So sorry DCIS is putting a shadow on your honeymoon. Just remember - DCIS will not shorten your life. In fact I read somewhere that many women with DCIS actually live longer (I'm thinking to discover the DCIS we are probably getting good medical care already, and will stay vigilent afterwards.) Sorry you have to undergo mastectomy. Right now is the worst part I think - waiting for surgery and all the questions and decisions. I had immediate reconstruction and was glad for that. In all likely hood by your first anniversary all this will be behind you. The first year of a marriage is tough and you have this medical hurdle to deal with as well. At least you know going in what a strong partner you've chosen. Best of luck.

debbie6122 · October 2010

Sunshine, So sorry you have to deal with this especially just getting married and starting a new life together.....

I will try to answer a few of your questions, first off nothing you did caused your bc, i never took the pill, ate healthy, excersized, there really is no ryme or reason why this happens. I had a mammo a year before my diagnosis and then the next year i i had a 2.5 tumor that was IDC 2 other lumps were DCIS and calcifactions thru out the breast, dont think they missed it just did not show up at the time or was not there yet.An aggresive bc can grow in a short time. Having er/pr+ means you can take the 5 year pill so that is a good thing.

You really wont know the extint of your tumor meaning the size, stage and grade all that factors in to your final staging and grading and treatments. Early stage bc are very treatable and managable.Treatments for breast cancer have come a long way and have some good meds and chemos out there that kick this cancers butt, woman with higher stage cancers are doing really well, chemo is no fun but it is doable maybe you wont have to do it?? I hope you wont have to but if you do you can get thru it, also there are plenty of threads on this forum for reconstruction that have a lot of great inforrmation that you will find helpful if you decide to go that route, i myself have not yet and im fine with it, so is my husband.

Im sorry your mom has had to go thru this too. but im glad she is doing fine, my daughter was diagnosed with bc before i was, it was hard for me but i was glad i was there for her and since your mom was dx before you, she will be able to help you cope a lot better, dont be afraid to tell her, she will handle better than you think she will be your biggest supporter.

Go have a great honeymoon and try not to think about it to much, have fun and relax, i went to hawaii before my surgery and chemo i had a great time and to my surpise i didnt dweal on it, then i was ready to take the bull by the horns when i got back. Just let the people who love you be there for you, we will be here for you too for any advice or support you need.

Just one last thing, you are only allowed 5 posts perday untill you get to a certain amount of posts, if you have any questions after you limit you can click on any members name and private mail them.

congradultions on your marraige, i will keep you in my prayers

Warm hugs

mjh69 · October 2010

Sunshine,

Sorry you have to deal with this, especially at the happiest time of your life. Enjoy your new husband, your honeymoon and your new life together.

I was DXd with DCIS in June, had a BMX in July, and am almost done with the saline/TE process. If you choose this route, it is very manageable. My next surgery is scheduled for November. I can honestly tell you, the worst part of this entire ordeal was the initial phase in the diagnosis...waiting, worrying, dreading....the actual BMX and recovery was not anywhere as bad as I thought. The saline fills are not very uncomfortable, living with these things has become very routine. I have always felt very lucky and grateful that this DCIS was caught before it turned into anything invasive. Too many sisters are dealing with far worse, and I have lost friends young to this disease. Every day I realize it could be SO much worse, and I truly consider this DCIS diagnosis a gift from my angels. Having a positive attitude has helped me tremendously with recovery, and I honestly feel great. At about the 4 week mark I felt like my normal self.

As another posted stated, don't blame yourself. I have been active my entire life and spend at least 5 mornings in the gym every week. I eat decently and keep my weight in a healthy range. I think some of us are just genetically predisposed to this dreaded disease. The good news for you is that it was detected early and you can make very proactive choices that will make you healthy.

I am in MA also, and can't say enough for my entire medical team. The care I have received has been extraordinary.

Have a great honeymoon, and know that you will make it through this. Be strong, stay positive, and enjoy your new life with your husband.

Estel · October 2010

I was DX with DCIS at 39. I agree with the above posters ... I did everything 'right.' I am thin, exercised every day (Pilates, weightlifting 3x a week, walked 2 miles every day), ate right and I still got it. My mother had it, my grandmother had it, was BRAC1 and 2 negative. There are genetic links they haven't discovered yet.

Breathe. Try to relax. The worst of this past year for me was the part you are in now ... the waiting, the uncertainty. It does get better.

Try to enjoy your honeymoon and as the above poster said, "Take the bull by the horns when you get back." You're not alone in the fight. One day at a time.

mikita5 · October 2010

Hi Sunshine: I too had DCIS, high grade,comedo neucrosis 18 months ago. I had a a bilateral mx with immediate DIEP reconstruction. I had no positive nodes.. This isn't a death sentence. Enjoy your honeymoon knowing you'll get thru this when you get home. Come back to this site and read, read, read. This is a wonderful place to be. I learned most everthing I know from this site and these wonderful ladies. Make yourself informed on all of your options and know you can make the decisions that are right for you. Please come back and keep us up to date on your progress and your decisions.

I will say a prayer for you that God will give you the knowledge to make all the right decisions. Lean on him-he'll see you thru this.

Hugs and prayers........And congratulations on your marriage!!

speech529 · October 2010

sunshinegal I am so sorry you are going through this at this beautiful time in your life. You must be assured that DCIS alone is not life threatening. DCIS itself is not invasive. What the others have posted is correct...do return to this website as there is much support and sound information.

Congratulatoins and enjoy your honeymoon with your wonderful husband!

Deliah · October 2010

Hi Everyone
I am new to this forum but would like to be able to share....
My name is Deliah and I am a healthy, fit 40 years old (this September) who was dx this March with residual, intermediate and high-grade DCIS in my right breast. This was quite a bit to digest as there is no history in my family. However, I started my periods at the age of 10yrs, was never pregnant and was on the pill for more than 10yrs consecutively. These combined are risk factors.

First thought was that I will lose the breast but thankfully it was necessary for me to have a mastectomy. To date I have completed a lumpectomy with clear margins and no positive nodes. I have also completed 7 weeks of radiation (October 1) and will in a weeks time continue with adjuvant therapy of Tamoxifen as my receptors were ER positive. Hope that I can have Helenap's experience but I know different people react differently. It would be helpful to also get some feedback from other Tamoxifen users from this board.

What I would say to Sunshine, as is also mentioned by others, is that you still have your whole life ahead of you. Everything seems to happen so quickly and can seem quite overwhelming but take the time to explore all of your possible options, talk to your physicians, ask plenty questions and educate yourself from sites such as this. Do these things in effort to make informed and sound decisions. Also, make sure that you do have plenty of support along the way.

I trust you do enjoy your honeymoon and when it's over you can deal with all that has to be done.

High grade DCIS - mastectomy - scared.

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