CancerCompass message board discussion started by survivenhodgkins on 7/14/2007 http://www.cancercompass.com/message-board/message/all,14349,0.htm Sun, 23 Nov 2008 00:00:00 GMT Sun, 23 Nov 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ Hello,I was diagnosed with Hodgkin's Disease in 1986 when I was 19 years old. I was treated with radiation therapy and then ABVD chemotherapy. Since then, I have had two beautiful children and have been married for almost 15 years.  I have had two basal cells removed. One from my back and one from my shoulder. About 3 years ago, I had my thyroid gland removed because doctors thought I had thyroid cancer due to the radiation. It turned out to be a multi-nodular goiter that was benign.  Recently, I have been diagnosed with DCIS in both breasts found on my mammogram. DCIS is stage 0 breast cancer. I am struggling with the decision to have a lumpectomy of both breasts or a double mastectomy with reconstruction. I was wondering if there is anyone else out there who could be of help. I just need to find out what other Hodgkin's survivors would do in my situation. survivenhodgkins Sat, 14 Jul 2007 00:00:00 GMT  On 7/14/2007 survivenhodgkins wrote:Hello,I was diagnosed with Hodgkin's Disease in 1986 when I was 19 years old. I was treated with radiation therapy and then ABVD chemotherapy. Since then, I have had two beautiful children and have been married for almost 15 years.  I have had two basal cells removed. One from my back and one from my shoulder. About 3 years ago, I had my thyroid gland removed because doctors thought I had thyroid cancer due to the radiation. It turned out to be a multi-nodular goiter that was benign.  Recently, I have been diagnosed with DCIS in both breasts found on my mammogram. DCIS is stage 0 breast cancer. I am struggling with the decision to have a lumpectomy of both breasts or a double mastectomy with reconstruction. I was wondering if there is anyone else out there who could be of help. I just need to find out what other Hodgkin's survivors would do in my situation.I also am a hodgkins survivor 1981 was treated with radiaton and again in 1986.  have been married 23 years with 4 kids.  I had same thyroid issues and removal a skin cancer on chest and this year was diagnosed with DCIS stage 1 in left breast.  I had a mastectomy and about to have reconstruction next week.  It is a very personnel decision.  My choice was to do what was in my best interest for me to have the best chance for long term survival.  I have considered having the other non diseased breast removed but decided not to at this time.  It is a very difficult decision to make and you really have to think long and hard about it.  It was a hard thing to go through but you do get through it and return to normal life.  And that is the main goal,  if I can help you anymore plese let me know magpie61 Wed, 12 Sep 2007 00:00:00 GMT Hello,Thank you for responding. I just had a bilateral mastectomy on August 21st with immediate reconstruction with expanders.  It has been 3 weeks now and I am back to work.  You're right, it is a tough thing to go through, but you get through it just like many other people have.  I had DCIS in both breast in multiple areas.  I chose to do a lumpectomy first and then the bilateral mastectomies when I found out the DCIS was in multiple areas of the breasts.  I'm happy with my decision.  Did you have basal cell removed from your chest?Thanks again! survivenhodgkins Sat, 15 Sep 2007 00:00:00 GMT Hi you sound like a very strong person back to work in 3 weeks thats  pretty tough.  I hate to say this but I don't remember any details about the skin cancer, the doctors office called and said it was cancer and use sun screen and watch yourself.  I should have got more information but I think I was going through the thyroid stuff then and just didnt want to deal with anything else.  Im glad your doing well and you made a tough decision that sounds like the right one for you.  I just had my reconstruction and it was pretty easy compared to the mastectomy.  Im just a little sore but doing good.  Good luck magpie61 Wed, 03 Oct 2007 00:00:00 GMT  On 10/3/2007 magpie61 wrote:Hi you sound like a very strong person back to work in 3 weeks thats  pretty tough.  I hate to say this but I don't remember any details about the skin cancer, the doctors office called and said it was cancer and use sun screen and watch yourself.  I should have got more information but I think I was going through the thyroid stuff then and just didnt want to deal with anything else.  Im glad your doing well and you made a tough decision that sounds like the right one for you.  I just had my reconstruction and it was pretty easy compared to the mastectomy.  Im just a little sore but doing good.  Good luck How are you doing?  Did you have expanders put it? survivenhodgkins Sun, 14 Oct 2007 00:00:00 GMT Im doing very well I did have one expander put in on the mastectomy side then at the same time they replaced the expander with a permanent implant they did a lift with a small implant on the other side  they cut around the nipple and down the middle.  That side is pretty sensitive still but the other side is fine no discomfort at all.  They take a little getting used to   they are very perky somthing my breasts have not been in a long time. but I think I will like them when the sensitivity settles down.  Have you started the expansion yet? that wasnt as bad as I thought it would be  just a little poke.  Are you having any treatment chemo or tamoxifen?  magpie61 Sun, 14 Oct 2007 00:00:00 GMT I am also a long term Hodgkins survivor. Stage IIB - 1988 - the usual treatments, staging lap, took out my spleen. Had radiation treatments, upper and lower. They must have used a very strong dose - got Radiation pneumonitis, still have lung issues. Have since developed thyroid issues, GERD, trouble swallowing, etc. - the usual chronic problems of long term Hodgkins survival. Managed to have another child in 1995, despite being told I would be infertile due to radiation, but ended up with Hodgkins again. Was treated with ABDV chemo - the bleomycin caused more issues with my lungs.  Was diagnosed with breast cancer in 2003 - small, 2cm lump on the right side. It was a very aggressive, estrogen negative tumor, most likely due to the radiation. I chose to have a mastectomy followed by Taxotere chemo. In 2004, I decided to have the left breast removed as well - I was so worried about getting breast cancer again that I couldn't go for a mammogram.  I haven't done any reconstruction, I decided to just enjoy life breast-free. It actually isn't that bad, t-shirts instead of bras. I had to learn a new way to dress - clothes that looked good with my C-cup breasts just didn't work anymore. I discovered a whole new fashion style that I really enjoy now. Also, I am divorced (prior to the breast cancer), but the lack of breasts has not been a problem for my love life. People really don't notice at all - they just think I'm flat-chested. I have done physical therapy to help stretch my scar tissue and restore the full range of motion to my arms.       cooljazzcatmom Mon, 26 Nov 2007 00:00:00 GMT  On 7/14/2007 survivenhodgkins wrote:Hello,I was diagnosed with Hodgkin's Disease in 1986 when I was 19 years old. I was treated with radiation therapy and then ABVD chemotherapy. Since then, I have had two beautiful children and have been married for almost 15 years.  I have had two basal cells removed. One from my back and one from my shoulder. About 3 years ago, I had my thyroid gland removed because doctors thought I had thyroid cancer due to the radiation. It turned out to be a multi-nodular goiter that was benign.  Recently, I have been diagnosed with DCIS in both breasts found on my mammogram. DCIS is stage 0 breast cancer. I am struggling with the decision to have a lumpectomy of both breasts or a double mastectomy with reconstruction. I was wondering if there is anyone else out there who could be of help. I just need to find out what other Hodgkin's survivors would do in my situation.Hello,I am a 27 year survivor of Hodgkins Disease diagnosed in 1980 from a lymph node found in my neck. My treatment was the same as yours. I recently had my annual MRI mammogram due to the increase risk of BC from the radiation. Thay found a suspisous area, so have had it biopsied and it was benign. My surgeon has highly recommended that I have double mascectomy with reconstruction. After doing lots of research I believe I am going to do it. I am very scared but I don't want to have BC and put my family through it. It is a very emotional decision.I have three beautiful daughters that they didn't think I would ever ahve due to the chemotherapy. So I feel for you. What have you decided? Paula43 Thu, 06 Dec 2007 00:00:00 GMT Hi,I decided to have a lumpectomy first, which showed two areas of DCIS in the right breast. I then decided to have a bilateral mastectomy, and I am very happy that I did.  My pathology report showed one more area of DCIS in the right breast that the mammogram nor the MRI picked up.  I have two small children and I want to be around as long as I can for them.  I would have chosen the mastectomy first if I knew how well it would turn out.  My surgeon out at USC saved my nipples and I had immediate reconstruction with expanders. I went back to work in three weeks, but felt much better after six weeks.  Just plan to have someone their to help you and you'll do just fine. The muscles are what hurt the worst after surgery, but like I said, after six weeks I felt much better. I figure, what is six weeks compared to a lifetime of my children spending without their mother.God bless! survivenhodgkins Fri, 07 Dec 2007 00:00:00 GMT Thank-you for responding. This has been a very stressful 5 weeks. To go through it all again(thinking you might have cancer again). I too want to be here for my girls. I have been researching alot and I am very lucky that the only side effcet that I have had in 27 years is GERD. I have decided to have them removed and recontrustion. I hope they can save my nipples as well. I am just scared. But I can do it. I have always relied on the Serenity Prayer to get me through life. Someone had suggested chat rooms and I am so glad I took their advice. It ahs helped so much.Thank-you again for your support. I will keep you posted. Right now we are waiting on the insurance co. to let us know if they will cover it.God Bless too! Paula43 Fri, 07 Dec 2007 00:00:00 GMT