I was only two weeks from my 40th birthday, in great shape, perfect weight, healthy and ready to enjoy being 40 and looking great. I have been going for mammograms since I was 35 because a very smart doctor recommended it since my grand-mother and an aunt died of breast cancer, plus another aunt on my fathers side had cervical cancer. I had to reschedule my yearly mammogram twice this year because I started a new job and did not have time to take off. I finally went, but this time the nurse came in to say they wanted two more pictures of the left side, one a spot check and the other to make sure they did not have too much fatty tissue in the picture. She came back in and said "the technician said things were fine, see you next year". I was on my way back to work when my cell phone rang, it was the nurse telling me the actual radiologist looked at the films and wanted me to return immediately. Needless to say my heart stopped, my stomach started burning, I was shaking and trying to swallow the lump in my throat while I called my husband at work. When I returned to the office they did two more mammogram pictures, only this time when the nurse returned she had a tear in her eye, wouldn't look me straight in the eye and only said "i am sorry, can you please follow me to the other side of the building, we need to do a sonogram on your left breast." I am telling you, this lump was getting harder and harder to swallow! After 15 minutes of sonograms, then another 15-20 minutes of waiting for the radiologist to return, this young woman walked in, how can this doctor with my life in their hands be younger than me??? Anyway, she set beside me, put her hand on my knee and said "i am very sorry we had to have you come back, but I am very glad we did." I stared at her and said "i am too?" she said that I should be because they found a tumor in my left breast and I needed to see a surgeon immediately. By the time I got to the car I was too scared to call my husband, and still too scared to cry, so the lump just sat there, in the middle of my throat not moving. I drove straight to my primary care doctors office and waited for the referral. While waiting I called my best friend who tried to reassure me "that this happens to a lot of people and it is normally just a cyst, nothing to worry about" so I felt a little better. I then called my husband who couldn't hardly talk, and when he did I could hear the trembling in his voice. I tried to reassure him like my friend did me, but it wasn't working. I became a basket case! The next morning I met with my surgeon, who asked me if I knew why I was there. I responded with "i think." he said that the reports faxed to him showed a carcinoma in my left breast, and I will remember his exact words "i have to tell you that I very rarely have a report from a radiologist already calling it carcinoma." I have never read up on cancer, it wasn't going to happen to me, so I said "what is carcinoma?" when he said cancer my world just quit moving. I was so scared, and this time I just let the tears flow. He told my husband and I that he would schedule surgery as soon as possible to have it removed, and to try to be positive until then. Right. The following thursday I had the tumor, along with 2 inches of tissue all around the tumor removed. The hope was to find good tissue, if in fact this was cancer, and we would know that we got all of it. The surgeon promised to let my husband know something, what he felt when he saw it, before I woke up, afterall he does many of these, he has to know something before waiting for the results. I told my husband that I would know what the doctor felt by the look on his face when I woke up. When I came out of the anesthetic my husband was standing there, holding my hand crying. That weekend my family had a surprise 40th party for me, and the next night my best friend along with my husband had another surprise party for me. It got me through the weekend, but I never stopped thinking about the phone call I was going to get on monday. Monday afternoon my phone rang at work and it was my surgeon, "i don't know how to tell you this, but you have invasive ductal carcinoma, and every inch we removed is cancer, we did not get it all." I didn't ask any questions, I just said thanks, then broke down. I was crying hysterically when I called my husband, and he had to come pick me up, I couldn't drive. On my actual birthday I was sent for a ct scan to see if the cancer had spread, what a day. Two days later I was told that they did not find anything in my liver or lungs, but they found my appendix enlarged, and "suspicious lumps" on my left tube and ovary. After a meeting with my obgyn the next day we scheduled another surgery for the next week. They removed my left tube, left ovary and appendix, all came back benign for cancer, thank god. This was the first good news I had received in a month now. But, we now had to make the decision on the cancer I did have in my left breast. My husband and I searched our souls, talked to family and friends, talked to our oncologist and primary doctor, and finally agreed to go ahead and have both breasts removed. It was a tough decision, but I knew that there was no way I could ever live through always wondering about the right one, or getting this kind of news in a year or two again. The surgery was tough, but we did have tissue expanders placed in immediately, so when I awoke I actually still had some kind of a chest. After the drainage tubes were removed I began the "fills" of the expansion tissue. Painful!!!!! But, hey I still wanted to look good in a swimsuit, and it made me feel better about myself to still feel like I had breasts, eventhough the large scar in the middle of each one was strange and made a deep indent through clothes. I got more good news, all 16 lymp nodes they removed in the left side were clean, no cancer!!! But we had a pet scan done anyway, just to make sure the ct scan didn't miss anything. I was feeling good, and when I met with the oncologist 10 days later I got more good news, all my receptors came back in my favor. Everything was looking great, and I was a rare case according to him. Receptors great, lymph nodes great, pet scan perfect, all the cancer in the left breast gone, and I had already eliminated the chance of it spreading to the right breast, and I was young and healthy. He suggested that I take arimidex, but he needs me to have my right ovary removed before I can do this. But, during this surgery I could have the chemo port removed they put in during my first surgery, just in case. He was leaving the option of chemo treatments up to my husband and I though, and told us we had a few weeks to decide on our treatment plan. I had two expansion fills, three visits with my doctors, and was feeling as good as you could expect someone to feel after a double mastectomy. But during the weekend before the 4th of july I started getting extremely fatigued. By monday I was having pain in my right shoulder and arm. I made an appointment with my surgeon a week before, to get my "all clear" to return to work, so I told him about the pain while I was there. He had my husband and I go to the hospital and have a sonogram done to rule out a blood clot, and he had us wait there for the results. When he called the waiting room he told us it was clear but he wanted me to make an appointment with the plastic surgeon first thing in the morning so he could see the swelling in my right arm. The lymp nodes were removed in my left arm, why was my right arm swelling?? The next morning the pain had moved to my left breast area, chest and neck. The plastic surgeon didn't see anything that made him think infection, since I didn't have a fever and there was no redness, so he chalked it up to muscle spasms from the fills, and told me to go home and take vicodin for the pain and valium for the spasms and they would put off the fill I was supposed to have that week for the next week. From 10:30pm that night to 6:30am wednesday morning I went through 6 vicodin and 6 valium, and about 10 hot packs on my chest. The pain was unbearable, and I spent the whole day crying and trying to get a doctor to call me back. I still did not have a fever so they said to wait another day and see if it continued. By thursday morning my chest looked like I had a large football under my left arm, with one pointy end in the back of my arm pit and the other pointy end in the middle of my chest. My entire chest was red, with streaks going up my neck and I had a fever of 102.5 degrees. I started calling doctors at 6:15am and at 9:30 finally got a return call. My husband stayed home from work because I was in such intense pain he was ready to take me to the emergency room. Too late, the doctor had already called and admitted me. By the time I got to the hospital the nurse who first saw me was in shock. Within 15 minutes I was on iv's of antibiotics, and within an hour had an entire infectious disease team working on me. I was on two kinds of antibiotics, each twice a day, through iv's and on so much pain medication I barely remember the 7 day stay. By saturday afternoon they had their answer, cellulitis. It had decided to attack my chest, and everything foreign in my body, and I needed emergency surgery. At 9:30pm on saturday night, july 2, I had all the expansion tissue removed, the two fill ports, the chemo port, a chest wall scrape and a lot of tissue removed from my chest area because of this infection. When I woke up at 1:35am my husband was laying on my arm, crying, scared to death. I once again had drainage tubes in, iv's for pain and antibiotics, but this time no chest. The scars were deeper, harder and longer this time. I was sent home 4 days later with a pic line in my arm so I could still give myself iv's of antibiotics twice a day for 10 days. Once the drainage tubes were removed I got the pic line removed, and am now on oral antibiotics twice a day for 30 days. This time the plastic surgeon said he will wait until I am off the antibiotics for 30 days (to make sure the infection doesn't return) then wait another 30 days before we begin reconstruction again. He wants to give me time to heal, but I honestly don't know how women handle it when they opt to not have reconstructive surgery. Everytime I look in the mirror and see my chest, the scars, the knots and swelling I cry. I won't go to bed without some kind of shirt so my husband doesn't have to look at me. He has never said a thing, and said he will love me any way, but I can't handle him seeing me this way. The frankenstine I have become is horrible. I don't know if I can mentally wait 3-4 months for the reconstruction to begin. Even with the infection that could have killed me (if we had waited much longer it could have gotten to my heart tissue or caused meningitis) I still want the expansion tissues back in. The only good thing about the wait is that it will also give us time to have another pet scan done. If there is still no sign of cancer I will not have the chemo port put back in, but I still have to decide about the ovary. My husband is so distraught. The thought of me having both breasts removed was hard enough, but now both ovaries? Throwing me in to menopause at 40?! What about our sex life? We have been hanging on to that with a very thin thread during this summer the way it is. I don't know what to do now. I want to be around to watch my children grow up, get married, have grandbabies, celebrate many more anniversaries with my husband (14 years next week) and never have this cancer return. But is it worth the stress of going through menopause early? If anyone has any ideas please let me know. I only have a little while to decide. Right now I am not being treated for cancer at all, I just had the double mastectomy. When I go in for the next surgery to have the expanders put back in I need to let them know my next step as far as cancer treatments. Please help, I am lost as to what to do or where to look for the right answer. Thanks for listening. Susan
my name is joan & I live near cleveland, ohio. I just happened to find your posting & am in awe of your strength. You have been through a lot and at a rapid speed. I see you posted your message in august and am just wondering how you are and where you are in your treatment.
I do not have breast cancer. My mom was 49 when diagnosed and 52 when she passed. But that was way back in 1983. A lot of research has made tremendous differences and getting cancer now compared to then is a whole different story. I will keep you in my thoughts susan.
Sounds like you have a lovely family. Jim & I have been married 23 years & we have 2 sons, mitchell 21 & matt 19. Iâm 44 and just had a scare, 2 mam's later & another visit today, but they tell me I am fine. I still feel the cysts -- that are uncomfortable, but I am told I am just fine. Anyway: saw your posting and wanted to say hey! Stay strong -- you are not alone in this.
I passed my 6 months without infection returning so the doctors said I could go forward with my reconstruction and cancer treatment. My husband and I went back and forth several times regarding the removal of my ovaries and being forced in to menopause to begin hormonal treatment for my cancer. He is worried about the sexual side effects, and I am worried about the physical side effects of menopause (hot flashes, weight gain, etc.), but I finally decided to go for it. Last wednesday I had my right ovary and tube removed, but didn't have the time at work to have my uterus removed, that would require 4-6 weeks, 2-3 if they could do it laproscopically. So, I have a uterus but no other female organs, so menopause here I come!!! I am scared because I don't want to loose the sexual intimacy with my husband, which has already had a large hole in it because of the double mastectomy. I can't blame him, it is mostly me because I don't want him seeing me and touching parts of me when it looks like it does, but I try. Tomorrow I go back in to the hospital and have my reconstruction started again. When the tissue expanders are put back in I will go through months of "fills" to stretch the skin and allow the tissue to grow and expand so I have room to put in the implants in about 5-6 months. I think once that is completed I may begin to feel like a whole woman again, at least I hope I will. My oncologist said he will give me anything I need for the hot flashes, mood swings, sexual side effects and weight gain if it gets too bad, along with the arimidex, and promised to stay by my side for the next 5 years, so I hope it goes fast! Thanks for asking about me, it has been a rough year and I am still trying to grasp that it actually happened! Hopefully 2006 will be a lot better for me, filled with good news and hope. My kids have been awesome, especially my 13 year old son. He is always telling me to not do so much, take it easy, asking me if I am hurting or if I need anything. My daughter is 18, lives in her own place, and is getting married in march, but she still calls me at least 2 to 3 times a week checking in on me. She is so excited about the wedding coming up, and I am just praying I am not sick for it. She wants me to go dress shopping, for my dress, but who knows what size I will be by then, especially in the chest! If the infection comes back I may be too sick, and if I gain too much weight I won't fit in to anything I buy now. After the first of the year and I heal from these last two surgeries I am going to begin walking again (i used to run 1-2 miles every morning before work, before I got sick in may), and trying to watch things closely. I don't really care what I look like for her wedding, just as long as I am there!!!!!
Take care, good luck with your family, and have a great new year! Thanks again for taking the time to check on me. Susan