Sandra K. on July 18, 2013
I was Diagnosed with:
breast ductal carcinoma in situ
Type and Description of Treatments:
Last year 2012 I went for my yearly mammogram and I had to have it redone because they thought they saw something but weren't sure. After the second one was done I had an appt. with my surgeon to get the results. My husband went with me. Once in his office he said everything was fine and there was nothing to worry about. Before I left he asked me about a mole the size of a dime behind my ear and if I wanted him to remove it. I said yes, right here in the office and he said sure. The mole was removed (no pain at all) and my husband and I went to dinner to celebrate the good news. My surgeon scheduled a follow up appt. for me the following week to check out where he took the mole off. What I thought was going to be a simple return visit turned into a nightmare. As soon as I walked into his office he turned to me and said they just got the report back from the pathologist and I do have breast cancer it is called carcinoma in situ. (breast ductal carcinoma in situ) I just sat there not knowing what to say. He then told me I would need a lumpectomy and scheduled it in 2 weeks. I was numb and speechless for the first time in all my life. How was I going to tell my husband that I really do have cancer? I cried all the way home. Once at home I felt myself getting angry. Angry at why I was told I didn't have cancer and now I am being told I do. I got on the phone and demanded to speak with the surgeon. His nurse said she would have him return my call. About 15 mins later the phone rang and it was him. First I asked him why was I told I didn't have cancer but now I am being told I do. He explained to me that he only got a verbal report back the first time he told me, but they looked into it more intensely and that is when they found the breast ductal carcinoma in situ. I just started screaming about how unfair this was and he was very comforting. He assured me I would probably only need the lumpectomy and it would all be over. When my husband came home from work I tried to explain this all to him but I could see he was angry also, not at me, but at the way things were done. He just hugged me and said we will get through it. I went for the lumpectomy as scheduled. They had to take me into x-ray first and put a needle in my breast to show the surgeon where the location was. They took me back to the waiting area with a cup over the needle and I waited until they took me in. The lumpectomy went really well. I was then scheduled to see an oncologist to make sure I was okay. This came as another shock to me! The oncologist told me I had 3 choices: 1. radiation for 6 weeks and then tamoxifen for 5 years 2. have my left breast removed 3. have both removed He gave me a month to think about it. All kinds of things went through my head, but the one good thing was he did not say chemo! After much thought I decided I did not want radiation and I would not take tamoxifen because I read all about it and I did not like the side effects. Now I was down to 2 choices: take one breast or both. I made an appt. with a different surgeon and once I talked to him I decided to get both removed because if I had one removed he still wanted me to take the tamoxifen. I figured in 5 years if that didn't kill me then I would probably be back getting the other one removed. I went for the gold and choose to remove both. I then had to see a plastic surgeon because I opted to have reconstruction done at the same time as the complete mastectomy. I went in on Jan 2013 and had both breasts removed and the lifters inserted. I never thought I could have as much pain as I had but omg it was unreal. I lay in the hospital bed for 2 days not even knowing where I was. On the 3rd. day I was discharged with 4 tubes hanging from me. When I got home they had prescribed me dilaudid, a hydrogenated ketone of morphine. For 2 days at home I was hallucinating and going out of my mind. I told my husband to throw those pills away and I would grin and bear it. The next 3 weeks were the worst of my life. I didn't know how to lay or even to turn. I felt so useless. I had to go back each of those weeks to see the plastic surgeon. I had a lot of complications. Wasn't healing right, tubes just kept filling up, but it came to a point where I had to have them removed before infection set in. Two of the tubes came out first then the next visit the other 2 came out. 3 weeks later the plastic surgeon noticed that my stitches were coming apart on the one breast so he sewed me up right there in his office. It was kind of scary but I did not feel a thing. At this point he inserted another tube. For 2 weeks I had to see him twice and I had to write down the amount that was coming out into the tube. It finally did slow up and the tube was removed. He then told me I needed to wait another 2 weeks before they started to fill my lifters. All I could think was finally. My first filling was somewhat scary because I did not know what to expect. I knew they usually put 100 cc in at a crack. I was told it would probably hurt for a while but actually I had no pain. I continued to go up each week to get them filled then the stitches in the right breast started to come apart and again he sewed that up right there in the office and said I could continue filling the left one but the right one had to be put on hold for now. The left one was coming along great almost filled to where I wanted to be. The weekend before my last filling of the left one and the start of the right one again I noticed how red my left one was and it was hot to the touch. Looked almost like I had one breast sunburned and nothing else. I called and I got lucky because my plastic surgeon was on call that weekend. He told me to come right up. At this point I was admitted to the hospital and was on antibiotics for 5 days. He said I had cellulite in that breast and if it did not clear up by the 5th day he would have to remove the lifter. I prayed and prayed but the 5th. day came and no change so off to surgery I went again. Before I went in I told him to just remove both lifters because at this point I had had enough. Both lifters were removed and I was sent home the next day. I have seen the plastic surgeon twice since then and he told me that in Sept. of 2013 he would go in and cut off all the excess skin that remains under my arms. Now after much thought on this I have decided to go to yet another plastic surgeon in another hospital which I believe to be more credible and see if I can still have reconstruction done or would I be better off as I am? It is a horrible thing to go through but I am cancer free and that is what counts. I think I should have thought long and hard on this and checked on all plastic surgeons and different hospital available to me. I rushed into it and that was my mistake. Maybe something good will come out of this. So that is my story and when I decide what I intend to do I will post. For now it is bras with padding in them and much thinking to do.
How do you feel today?
Not bad. No Pain at all except when I wear the bras from the extra skin under my arms
Since the diagnosis, what has changed in your life?
Almost everything. I have to dress differently, have a hard time sleeping because of everything going on in my mind. I worry about the other women in my family. No sexual desire.
What is going well for you right now?
I have become more active than I was. My husband is understanding and I have a lot of support.
What is not going well for you right now?
Pain under my arms from the bras rubbing against the extra skin.
What has been the most challenging thing about having cancer?
Wondering if I will ever get it back again.
When difficulties overwhelm you, where do you go for support?
None really, overwhelmed, and I have the support of my family.
How have your long-term goals or life goals changed since diagnosis?
We had to put a cruise on hold that we were going to take.
What is your work arrangement right now? What are your hours?
I do not work.
Since the diagnosis, what has changed in your work life?
I quit work.
What has helped you continue to work the most?
What advice do you have for others trying to work through treatment?
Just to give it much thought and don't rush into it like I did. Check out the doctors and the hospitals.
How have you dealt with any side effects of treatment?
If "today's you" could give advice to "day-of-diagnosis you," what would you say?
I would say it is not the end of the world as long as there are good doctors out there that can help. And please get your mammogram done yearly. I caught mine at stage 1, if I had waited it could have gone to stage 3. Early detection is the best!