Hodgkin's Survivors/Secondary Breast Cancer

By the way, would anyone go back to the same surgeon for the mastectomy?  I really feel he holds the blame for this situation because he knew about my Hodgkins, but was also the one to give me the lumpectomy/mastectomy choice.  The surgery was done before he referred me to oncology, which was obviously a huge mistake...

Hi! I've never felt compelled to reply to a subject board until now. My heart goes out to you. I was diagnosed in 1989 with HL and had upper mantle radiation. I was diagnosed with BC in January-4 month after a negative mammogram. I found the lump myself. In hidesight all of my docs now tell me that those of us who have had mantle radiation should get breast MRI's because they are much better at diagnosing BC. I am a nurse so I get to pick from the docs I consider the best. I personally decided to have a bilateral mastectomy (cancer only on the right) mostly because I have seen too many women come in 5 years later with cancer on the other side. My PS who I totally respect his opinion said he was most comfortable using tissue expanders in my case because of previous abdominal surgeries and also because I was too thin to get fat from elsewhere. He says after radiation what he worries most about is the skin. I had my surgery in Feb and so far everything is great. The worst thing about tissue expanders is that they are uncomfortable and you feel like you are carrying rocks on your chest. Two friends of mine have had this done and they assure me that once the expanders are replaced with the permanent silicone ones they felt better almost immediately. The down side is you have to leave them in at least 3 months after chemo is completed. At this point now I am finished with my chemo and my PET scan was clear. halleljah! My case was presented to a tumor board and they recommend no radiation for now. Some of the radiation oncologists now say that they aren't completely against localized radiation for those of us who have had rad before. Case by case. Take good care of yourself and best of luck. Whatever you decide it has to be right for you. Also don't forget to eat well- Johns Hopkins just came out with new dietary recommendations- breathe, and it's okay to cry. Stay strong-we've already been through this once and can do it again. We are survivors. DX 1-7-11. Stage IIIA Type 3 5/9 lymph nodes

Hi Ladies I belong here after researching my health records. GREAT RIGHT!

Dx w/ Hodgkin's back in 89. I was in middle school didn't even know what was going on w/ me. My mother wasn't the most talkative person.

Later Dx w/ TNBC August of last year (found the lump myself) and completed 6 rounds of TC in Feb. Decided to go w/ BLMX and exchange surgery happened 6/9/2011. For the most part I feel good, never had any major health issues other than Hod and BC. I am very optimistic about my future. I work w/ two ONC and neither see a reason why I wouldn't be here to raise my two jitter bugs.

I am doing everything in my power to stay cancer feel. I just wish I knew early so that I could have done more to help myself. I have book marked this page and I will come back periodically to update.

TAKE CARE AND WELL WISHES!!!

Hi, I had Hodgkin;s at 14 (1984) and was also very radiated.. I developed Thyroid cancer at 25 after watching a nodule on it for many years.. and now at 40 dx with DCIS... I had a BMX on JUly 1st and am undergoing the "fun"of  tissue expanders at the moment.  I am doing so much better now than I was in May when diagnosed.. I was so fed up and mad... my heart goes out to all of you who also have to deal with all this.  It is hard to keep everything in perspective some days, but I am trying.  I had (so far) no issues with skin and expanders....

I feel like I have new friends and am so grateful.  Feeling alot more optimistic today and talked with 3 of my physicians yesterday...  too long of a story to post right now as I must head to work.  But I am wondering if any of you (with breast cancer on one side) went through genetic counseling before decided to have BMX.  All three of the physicians are encouraging this rather than just jumping the gun.  Just curious about the rest of you and if you were advised the same thing.   Love...

I had the gene testing done... it was $3000 but my surgeon said they wouldn't do it until my insurance said they would pay it...about a month ago I got a bill from my insur. company saying they weren't paying it, but there was also a note that they hadn't received info they requested and I haven't gotten a bill from the lab so I am not worring about it yet... my new attitude since BC.. I worry about as little as possible until it is right on top of me:)  I was negative, but I found out more for piece of mind with my daughter (she is 5 years old) and also for the risk of ovarian cancer, but I was doing BMX either way, for me I had multifocal DCIS and lumpectomy wasn't an option without needing reconstruction anyway... and with out having radiation as a backup I was a sure thing for a single MX, but I know I would always worry my self sick about the other side.. even though  I read on here somewhere a woman who said " if you had cancer in one arm you wouldn't cut off both arms".. that was the only quote I ever found that had me thinking maybe not to do the BMX, (and one of the surgeons I consulted with wasn't really behind the idea..ironically that one was the so called expert at Sloan Kettering... but the other 2 I saw supported my decision), and then once I considered my reconstruction options BMX was the only option for me.  It is a very hard choice and only you will know what is right for you when you finally make it, I think it is harder having all these options and what ifs.. I felt soooo much better once I had a game plan and could get busy getting rid of the cancer.  Hope you find your answer soon.. do what feesl right for you and will give you the greatest peace.  I have not regretted my BMX one bit ( I am 5 weeks post op) but the tissue expanderas are not fun... they did get a lot better once I started getting fills, but I wouldn't want them long term.

Hello friends - confusion, confusion, confusion.  I am at a point now where my mind is much more at peace with the very unfortunate, unncessary surgery I underwent.  I just received the paperwork to start genetics counseling.  I am all for this but will now have to tell my mom what I am going through. I have had this diagnosis for a few months but have kept it from her because she is 92 years old, very sound but very much a worrier.  I really didn't want to have to burden her with this during her final years but there is no other family for me to get the detailed history from.  What I am really torn about right now is whether to have one or both breasts removed.  My physicians (primary, oncologist, present radiology oncologist and past radiology oncologist) all say the same thing...  it is an option but they don't feel I need to do something that drastic (unless the genetics counseling shows otherwise.)  They are all supportive of the idea but don't necessarily recommend it.  I COMPLETELY trust my primary doctor and my old radiology oncologist, who previously also had Hodgkin's Disease.  I tracked him down in another state since he has moved during the past 19 years, but he took my phone call yesterday.  Can you ladies that made the decision to have BMX, especially those with negative genetics counseling, tell me what your deciding factor was?  Also if anyone has percentages of breast cancer after radiation for Hodgkin's or recurrance in the SECOND breast or know where to find accurate information, please tell me.  I guess I like "numbers" as they seem to put things in better perspective for me.  I am attaching a note from my oncologist, but this number seems really low to me.  It is impossible to know who to believe.  Any help would be so much appreciated.  Love to you all...

Response from my oncologist: The overall risk for developing breast cancer 25 years after therapy for Hodgkin's is 3.5 percent for women who received radiation therapy at age 30.  This risk is higher in the left breast if you received radiation to the spleen area and lower in the R breast. Some studies find no increased risk if the radiation was given after age 30...     (I was 33).

I was told my risk for developing BC was higher than the general public. Couldn't remeber the statistics because I was just Dx'ed and emotional, but that's what lead me to have a BLMX. I wanted to take the what 'if' out of things. 

If I would have known earlier about my status I would have done the nipple sparring BLMX. There's a young lady on the reconstruction board that did this. She's a hottie and has moved on with her life. She wasn't Dx'ed she just didn't want to get that awful Dx. My biggest problem is being treated multiple times, because that will bring on another set of problems.

I love my results I will have to get some revision work done. It was a process to get this far, but I am happy w/ my decision. Hey my new girls won't sag EVER. LOL Just praying for a little more feeling in the near future so I can feel a little more complete, but all is well.

I haven't posted for a few days...  in all honestly, as much as I want to hear what you all have been through and had done (I have been reading other message boards as well), I also find it utterly confusing.  It's almost as if there are too many choices and I have absolutely no idea how to decide.

I went to see the plastic surgeon again yesterday.  The first time I saw him (prior to my lumpectomy) we were talking about tissue expanders and implants.  Apparently, no one was aware of the massive doses of radiation that were standard protocol 19 years ago, so my options for reconstruction have changed.  Tissue expanders are no longer a choice for me, and I may not be able to have the latissimus dorsi flap either.  He is checking with my old radiologist to see the exact area that was radiated previously.  My new alternatives include the TRAM free flap, possibly the SIEA flap and the DIEP flap. I have to wait almost a month for a consult to make sure the referral is apporved by my insurance.  Did any of you go through one of these surgeries?  I know very little about them, only that they are considered micro surgeries and are quite lengthly.  They (at least some of them) are performed by a team and the complications seem pretty severe to me if all does not go well.

I really am at a place right now where I feel like I am just taking a leap of faith as to which procedure is right for me.  I guess there is no way to know for certain and that's just plain scarey!

By the way, is anyone from Wisconsin?  I live near Madison WI and will hopefully be referred to UW Hospital/Clinics for further evaluation.   

Hi all,

I had LD reconstruction with an implant as there was concern about stretching radiated skin.  I was able to get a size D cup for symetry(sp?) as I only did the one side (a decision I now regret sometimes).  However, I did have a recurrence on the mastectomy side which was in breast tissue so a mastectomy does not mean your totally safe from bc.  In fact, my doctor and surgeon at the Mayo Clinic both say that an elective mastectomy of my "good breast" has not been proven in studies to increase long term survival for whatever that is worth.  As far as risk goes, I have been told that the age you were when you received the radiation for hd matters a great deal.  The risk appears to be much higher (I have seen 30% and higher) if you were 20 or younger.  Something about breast tissue still maturing in these years.  It also decreases risk if you had already given birth.  Interesting.  As for the lung cancer risk, I am hoping my boobs soaked up all that radiation and spared my lungs!