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Post Hodgkins Lymphoma now diagnosed with Breast cancer

threestrikes01
Posts: 2
Joined: Mar 2012

This is my first time posting, I have recently been diagnosed with breast cancer as a direct result of mantle radiation I had in 1980 at the age of 19 for stage I Hodgkins lymphoma. My breast cancer is stage I no lymph involvment and is very slow growing. I was told it had probably been there 10 years before it was big enough to even be seen on mammography. Most normal treatment in the case of breast cancer in hodgkins patients is bilateral mastectomy but in my case I also have coronary artery disease with 3 stents which also was a direct result of the mantle radiation. I will be on plavix for the rest of my life, I was told mastectomy would be a big surgery for me with the heart issues and that lumpectomy with radiation would be very effective for my early stage breast cancer. I am defineatly not a candidate for whole breast radiation but did qualify for an accelerated 1 week therapy that is very pin pointed and will totally spare my heart and lungs. It is the savi device,
Since I am at increased risk for mastectomy and lumpectomy with radiation for early stage breast cancer has the same outcome I had lumpectomy and now have the savi placed, I will be doing radiation next wwek for 5 days total

I was told there are two risks ,,,,infection of the device and possible fibrosis of a small part of the breast tissue that will receive additional radiation due to the overlap of the previous mantle field. The doctors are all very optimistic that this will work for me. There are two previous HD patients who had this same type of treatment 8 and 6 yrs ago. They both do have some fibrosis of the skin but nothing that makes them regret their decision, I was wondering if there is anyone else out there that has had radiation over the top of previous radiation for HD and how that went, There aren't many of us as most chose mastectomy for breast cancer.
Thanks

cathyp's picture
cathyp
Posts: 366
Joined: Dec 2009

I too had HD in 1989 and 1994. Invasive Ductual Carcinoma in 2007. I was able to proceed with a double mastectomy. No radiation, chemo or hormone therapy (gyno and TIA issues) for the Breast Cancer.

It must make you feel relieved that your doctors have treated similiar patients. Have you thought about getting a second opinion though? I had 3 opinions, local, MSKCC, and Fox Chase. Do you have a Long Term Follow up clinic near you? I see a specialist at Memorial Sloan Kettering Cancer Center. The doctor is a Long Term Effect specialist, seeing Hodgkins and Leukemia patients decades after treatment. He works with Cardiologist who only research and work on radiated hearts. Their BC docs have seen many HL patients with hearst disease and BC. There are other clinics throughout the country. Also, there is a fantastic website that has resources for you. It is a mailing list(email) for long term survivors. Once you join, you can search the archives for patients who went through you circumstances. You can ask questions and fellow Hodgkin's survivors will chime in. I can't stress how the mentioned website has aided me as I get hit with new side effects from treatment. (We are closely monitoring my heart among other things).

I'll private message you with the website name.
All the best to you,
Cathy

threestrikes01
Posts: 2
Joined: Mar 2012

Thank you for your reply. I will be looking for the web site name. That is a good idea about finding a late effects specialist. Currently I am being seen by a Surgeon that is a part of a Comprehensive Care Center for breast cancer in our state. The breast surgeon and radiation oncologist are both out of that center. It is one of a few such breast facililities in the nation and I am very lucky to be able to be treated there. My medical oncologist is not a part of that center but I have been his patient for hodgkins disease since 1996 when I recurred the second time and the tumor was the size of a soccer ball. He is almost like family and I trust his opinion very much. My cardiologist is one of the best in the state and she is at the same campus as the comprehensive breast care center. She has also been with me for along time and I trust her opinion as well. All these docs are working together as a team. I do agree though. It never hurts to get another opinion. Sometimes it is good to hear from people that do not know your case. Fresh eyes. I will look to find a comprehensive cancer care center for followi up. I live in Indianapolis. I know that Chicago has one The University of Chicago Medicine.

cathyp's picture
cathyp
Posts: 366
Joined: Dec 2009

It is comforting for me to hear of your team's expertise! We are a rare bird that needs special handling for everything!
If you sign up for the website, you normally get a welcome email and it will provide useful links such as a listing of Late Effects Clinics. Here is the link, I hope it is ok to post this:
http://tinyurl.com/cdn2omw

Take Care and good luck,
Cathy

sslemoine
Posts: 2
Joined: Jul 2012

I also had HD in 1982 and was treated with radiation therapy only. I have frequent screenings for the increased breast cancer risk, but had no idea the risk could be as high as 40-50% based upon age at treatment and extensive RT. I have my 30 year follow-up visit this week and have a list of questions based upon research regarding late effects of RT. I am very interested in finding out if there are any late effects specialists in my area - Columbus, OH. I am especially interested in the cardiac effects as I have had some odd symptoms - rapid resting heart rate, dizziness when going from reclining to standing, fatigue, etc. Any additional websites or resources you can recommend would be greatly appreciated! Also, any good info you have received from your specialists that you could pass on would be helpful for me to bring up at my follow-up appointment tomorrow.
Thanks!!

cathyp's picture
cathyp
Posts: 366
Joined: Dec 2009

wondering how your appointment went. I was away for a week so missed your posting.

sslemoine, one of the first things I learned at my adult followup doc was all of us HL survivors treated with radiation have rapid resting heart rates. Mine is usually around 100. I have gotten used to this but my PCP can't understand how I can live with it. I do know if it get worse, meds can help. Fatigue is another universal complaint of fellow long term survivors. The dizziness may be cardiac related. Really, a specialist that follows survivors is your best bet to offer you a comprhensive plan to manage and be proactive for all of the possible effects from our treaments. I do know of HL survivors going to the Cleveland Clinic for cardiac sugery as a surgeon there is well versed in radiation damage. Hopefully you can find a specialist close to you.
Are you alternating mammos with breast mri's, one every 6 mos? I believe that is this standard of care for us.
Here is a Survivor Guideline book. Some survivors present this book to their pcp's.
http://www.survivorshipguidelines.org/
It is written for pediatric cancer survivors but it applies to me too. I was dx'd at age 29.

Hope you got some answers at you appointment!

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 1008
Joined: May 2012

Cathy,

I have read a lot of boards over the years at sites other than this one, but I cannot recall a newcomer's just-stated need being as precisely and specifically answered as in this response of yours.

To my manner of thinking, it cannot be a coincidence. Geeze...I am at a loss.

max

cathyp's picture
cathyp
Posts: 366
Joined: Dec 2009

Hi Max,

I've read your comment a few times but I can't figure out the context of it!!! May be it getting late but I can't figure it out;)
Thanks,
Cathy

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 1008
Joined: May 2012

I could answer personally, but just let it pass. Believe me, it was strongly complimentary in nature and intent.

max

cathyp's picture
cathyp
Posts: 366
Joined: Dec 2009

oh, thanks!!! that was the way I was leaning. whew...

Bermudagirl
Posts: 120
Joined: Jun 2012

Hello everyone,

I stumbled on this site and thought I would chime in. I had chemo and radiation 1o years ago for Stage II Hodgkins disease. I'm fine now, but I have an MRI and mammogram alternating every 6 months. Of course when you go looking for something you'll find it, and my last MRI showed "benign papillomas" which were surgically removed this past April. I am not naive and am mentally preparing myself for a breast cancer down the road, but am trying not to worry too much about it.

I'm knee deep in supporting my boyfriend who was just diagnosed with Stage III esophogeal cancer. The treatment and surgery that he is going through makes my Hodgkins look like childs play.

I just saw my oncologist this week, and got a clean bill of health. While I no longer get PET or CT scans, all my blood work is perfect, and I just hope for the best.

I'm now 53, and while I know that cardiac issues can be a concern, I'm fortunate that I have not had any issues with that yet.

Sandy

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 1008
Joined: May 2012

Bermudagirl,

I replied to something you had written elsewhere, so look for that as well, if you will.

Most organ cancers require surgery, and that, in most cases, becomes ugly. A good friend, after having nose cancer and having most of his nose cut off, 5 years later got bladder cancer. He had his bladder cut out, when on a bag, and was in ICU for 90 days, most of that time on chemo. He could not remember any of that 90 days later ! Her was clean and became an excercise fan, waiking miles a day. He was my main coach during my six months of chemo, and called me often. I could barely talk due to lung toxicity, but he was an angel.

After many years clean from bladder, he got lymphoma, and died very shortly therafter.

This is a trial, but for a reason. Many friends (mostly prostate) have died after 10 or 12 years of fighting, but I tell them to cherish and be thankful for all of those years !

My friend Gary will soon die from prostate, late stage IV. I have watched so many die, close up. I give thanks daily for my remission.

Bless your friend, and be there for him. May he have 40 more years !

max

.

ScottHonolulu
Posts: 1
Joined: Aug 2012

Hi Cathy,

My wife had HD in the late 80's (at 19/20 years old)...had radiation...we just got news yesterday she now has BC (46). She also had Graves Disease about 10 years ago...they had to radiate thyroid then. We were not aware of increased risk of BC from the old radiation. So this took us by surprise. We don't know what stage or anything yet. We will find out more next Tues.

Do you have any advise for us? Thanks for being open on this message board...I'm not sure if Karen will post or not.

Aloha,
Scott

cathyp's picture
cathyp
Posts: 366
Joined: Dec 2009

Very sorry to hear of your wife's dx. Also, it is unfortunate that you were unaware of the potential long term effects from our HD treatments.
A BC dx for a Hodgkin's survivor is complicated due to the fact that our treatment options may be limited or need to be tailored because of our past Hodgkin's treaments. Therefore, it is best to consult with a LT followup specialist or oncologist who is aware of this.

Once this present hurdle is dealt with for your wife, I would suggest you obtain a copy of the Pediatric Cancer Survivor Guidelines for Long Term Follow-up Care. It can aid your wife's family doctor in what tests need to be done to stay on top of potential LT Effects. Right now, that would be too much information to deal with.

I knew before my BC dx that my only option would be a double mastectomy. No radiation as I had mantle radiation for the HD. I do know of HD survivors that had lumpectomies and some with targeted radiation therapy. I am aware of 2 survivors choosing lumpectomies that are undergoing mastectomies for a recurrence. Of course I do not know the statistics that the leading long term followup doctors have regarding our treatments choices and outcomes. My mx was Jan 2008 and I remain BC free, no other treatment for stage 1 Invasive Ductal Carcinoma (I opted out of chemo because benefit would have only been 1-2%).

Right now, my advice to you is to find someone who is keenly aware of our past dx's and tx's and is knowledegable of what that means for us survivors. If you need specifics, I could help you out by providing links for specialist and guidelines.

All the best to you and your wife,
Cathy

Oliverhog
Posts: 1
Joined: Nov 2012

Cathy, I've seen you on here in a few places and I find it comforting. I feel a big whine coming on. I had mantle radiation for IIA Hodgkin's in 1985. Was treated with chemo in 1987 for 8 months for recurrence. Had already started developing pulmonary fibrosis. Over the years my lung capacity has decreased to 37% of predicted normal. I am hypothyroid and lost my fertility when I was 26. I was diagnosed with invasive ductal carcinoma in my right breast on 10/5/12. At first the surgeon was talking about giving me two or three months of chemo to shrink the tumor. I balked at getting more chemo. He then thought double mastectomy under local with sedation because of my lung disease. Then the doctors suggested I go to University of Chicago. Here's my dilemma. At this point, I'm not sure if I need chemo. I think possibly I will because, though the cancer is estrogen receptive positive, apparently there was a lot of mitotic activity which means they call it aggressive. At this point, no one believes there's lymph node involvement and all other scans have come back clean.

I had asked about whether or not the surgeon could save my nipples when they do the mastectomy. They took some measurements I guess because they're thinking of that. I talked to the surgeon after she had brought my case before the panel to figure out the best way to handle my complicated case and I thought she said I wasn't a candidate for reconstruction even with implants. From everything I've read and seen I don't understand why I wouldn't be a candidate for implants. I'm small busted, probably between an A and B and obviously wouldn't be looking to be a double D. I'm not sure why I asking you this, but I guess I feel the need for some emotional support from someone who's been there, done that. And, I am feeling kind of sorry for myself. I too have a relatively high heart rate, in the upper 80s or lower 90s when I wake up, but otherwise, usually around 108 or 112. All the doctors wonder why as well. I'm scheduled for an echocardiogram before my surgery, which hasn't been scheduled yet. I'm nervous.

In your conversations with people on this site, have you ever encountered anyone who's had radiation to the chest for Hodgkin's and been denied the opportunity for implant reconstruction after mastectomy? Or am I possibly a special case because of the fibrosis? Though I can't see how having implants versus real breasts makes a difference.

cathyp's picture
cathyp
Posts: 366
Joined: Dec 2009

Oh please rant away, that's why we are here. We get it, we know exactly where you are coming from, us other Long Term Survivors.
So when I was dx with IDC, all my doctors strongly urged against reconstruction. They wanted me to avoid another major surgery. Also, when the double MX was done, they were not sure what the final patholgy would be. If I required chemo, they wanted to start right away. If I had recon and complications ensued, chemo would be delayed. Because our chest received such high doses of rads, they had no way of predicting how my mx sites would heal. We even consider hyperbaric oxygen treatments before surgery. I'm sure the docs were being extremely cautious, but I went along with the recommendations with no hesitations.
Regarding chemo, did they send your tumor out for oncotype testing? My score came back low indicating chemo would reduce my chance of recurrence by 2%, I declined chemo.
Ahh, the heart rate. Sitting watching tv, I may get it down to 90. It rises like yours doing normal activities. This is true of all Hodgkin's patients treated long ago with rads. My PCP of 23 years insisted it was anxiety. It wasn't until I met my specialist that he explained the where and how of the HHR and even called my NEW PCP to explain it. Have you been getting annual echo's or stress echos as part of your followup? I have for the last 23 years and I have valve problems among other cardiac issues from the rads and chemo.
Our care is so complicated as LT Survivors. You probably have read the importance I put on having a LT specialist on your team or at the very least a PCP willing to be versed in Survivorship Guidelines. I am so sorry that you have encountered another "gift" of our treatments. What really helped me was finding my specialist and joining the ACOR website to converse with survivors just like you and me that have "been there done that". I do remember some ACOR list member having recon successfully. It may be benficial to hear their stories. We really need to be informed facing our new challenges.
Please vent away and ask anything that comes to mind. I'd be happy to try to help.
Cathy

40yearsandcounting
Posts: 14
Joined: Dec 2012

I've just become a member of CSN and am looking to connect with survivors of Hodgkins. Thanks so much for these posts- so reassuring to know that I am not alone!!

I was diagnosed in 1972 when I was 15. Stage 1V. Pretty bleak prognosis in those days. I had several rounds of radiation for tumors in my neck and chest. Subsequently underwent chemo after tumor in my chest reappeared. Like many other long term survivors I've had a thyroidectomy and have also had open heart surgery to replace my aortic valve. I chose to have bilateral MX about 11 years ago (with reconstruction by the way- no problems.). I had lung biopsies a few years ago for what turned out to be benign nodules. More recently have had trouble with my voice and occasional difficulty swallowing.

Despite a somewhat rocky road I've managed to be in good health all these years. I've even completed six marathons though I walked the last one as it was only a year after my heart surgery. I am followed closely by a team at Dana Farber that specializes in cancer survivor issues and have found that to be a great help.

I'd love to hear from other long term survivors- just to know you're "out there" would be great. And a word to those recently diagnosed- believe. I'm living proof.

jimwins's picture
jimwins
Posts: 1977
Joined: Aug 2011

Welcome to the group and thank you for posting/sharing.
I'm not a long term survivor yet but I'm very thankful
for what I have :).

Please continue to share with us.

Hugs,

Jim

40yearsandcounting
Posts: 14
Joined: Dec 2012

Jim thanks so much!!

I've been able to read some of the posts from you and Cathy and they are all very reassuring and helpful. Just being in the company of others who have been through this is incredibly powerful.

Wondering if you have any ideas for how I might be in touch with survivors who have been out there as long as I have (or longer certainly!!) I'm curious to know if other 40 plus year survivors have had other health issues that I should be aware of. I've had some of the same problems that have already been mentioned. It would be helpful to know if there are other things I should be thinking about. Not looking for trouble, just curious!!

Hope you are doing well, and thanks again-

jimwins's picture
jimwins
Posts: 1977
Joined: Aug 2011

I found this at another site:

20+ Years Survivors of Hodgkins

You might want to start a brand new post here as well with
the subject you mentioned.

Jim

cathyp's picture
cathyp
Posts: 366
Joined: Dec 2009

Hi 40 yrs and counting! Congrats on 40 years. I know your survivorship is both a blessing and a curse. It doesn't come alone.

Tomorrow it will be 23 years for me, dx at 29. I know you asked if there are other LT survivors like you out there. Many are members on the LT-Survivors ListServ at the ACOR website. Alot of issues are tossed about there. There is a lot of information.
I know other survivors have encounted VC problems, it became fibrotic. I happen to see an ENT at Cornell Weill in NYC for my paralyzed VC. It was paralyzed during the surgery for the Hodgkins and a year later, teflon was injected in it. Now, a teflon granuloma is forming that we watch. The ENT I see has other HD survivors who have come to him with your issue. Originally, an ENT at NYU wanted to do surgery on the exterior of my neck to remove the granuloma replacing it with muscle from my neck. I had to remind him, I had rads to my neck and my muscle is fibrotic and useless. He had to change his way of thinking and now the solution is surgery from the interior of the throat. My worry is, my one operating VC will become fibrotic and paralyzed too. Have you been to an ENT yet?

As for you, I'm thrilled that you see a LT Survivor Specialist at Dana Faber. This is the key to have a team that understands our unique problems from treatments.

If you attempt to join the mailing list on ACOR and have any problems, let me know and I will help. I was amazed meeting our fellow survivors who have been there, done that, they all get it.
Hope this finds you doing well and great to hear from another LT Survivor!
Cathy

ps: how proactive of you for you proph mx's! I wanted to do it and was met with "lets wait a bit" and bam, Invasive Ductal Carcinoma for me. Way to take charge of your health and body!

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 1008
Joined: May 2012

What chemo did you use ?

I know MOPP was the norm back then. I have a survivor friend who has a story similiar to yours, and he has shared some of the horrors of MOPP. He also says bone marrow biopsies back then were drawn from the heel, at least for him. I know the upper hip is now the norm for the bone marrow biopsy draw. He was in tenth grade when diagnosed. He was one of three kids in his high school diagnosed at the same time, and he was the only survivor.

Congrats !

max

40yearsandcounting
Posts: 14
Joined: Dec 2012

Cathy- congratulations on today, your big anniversary. HUGE. That's an incredible milestone. I'm thrilled for you and I wish you many, many more anniversaries. I would love to hear more about the vocal chord issue. I did see and ENT at Mass General last year but I'm not sure they were particularly familiar with the problem as it relates to radiation treatment. Is it possible to contact you directly via email? not sure how that works as I am so new to this. In any event, congrats again!

Jim- thanks to you for the link you posted. I've already been on it. GREAT resource.

Max- I did have MOPP. It was pure hell. Things were a lot different in those days. No oncology treatment centers, no reclining chairs, no TV's, no anti nausea meds. I got my chemo on a stretcher in a cubicle at the Emergency Ward of my local hospital. I got violently ill for days. I was so tired that my parents used to take turns holding up my head so I wouldn't vomit in my sleep. They tried putting a tourniquet around my scalp to keep me from losing all my hair but all it did was to give me a migraine headache on top of everything else. I thankfully don't remember too many bone marrow draws but I want to say it was in the base of my spine. Like your friend I was one of several kids from my high school who were diagnosed within a relatively short period of time- five or six in less than ten years. One other with Hodgkins, one or two with lymphoma, one with sarcoma I think. I knew and met them all. My dad was the principal of our high school and asked me to talk with them, to encourage them with my story. I was happy to do it. Sadly they are all gone- died within a year or so of their diagnosis. Sometimes being a survivor is not easy.

Thanks for all your good wishes. I'm glad to be in the company of some pretty amazing people! As new as I am to this it has already been an experience of a lifetime! Take care- Erin

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 1008
Joined: May 2012

Erin,

MOPP is still in use at times, mosty when, for some rare reason or other, abvd is not an option. MOPP contains Mustargen, one of the first chemo drugs ever used, derived from Mustard Gas around WW II. ABVD was developed mainly to lessen the side-effects of MOPP, although abvd itself can be bad, even deadly -- bleomycine can cause lung fibrosis, and Adromycine can kill heart muscle .

My friend said that he lost about 40% of his body weight, going from a line backer position in football to around 110 pounds.

Thanks for your uplifting accounts,

max

cathyp's picture
cathyp
Posts: 366
Joined: Dec 2009

Hi Erin,

I sent you a private message on this site on how to stay in touch!

Cathy

marysg
Posts: 1
Joined: Dec 2012

Hi,

Looking for advise. My yearly mammogram came back showing changes in my right breast. Of course that is all they would tell me over the phone. Diagnosed with HL in 1987 at the age of 25. Was treated with chemo and radiation. Tumor was spreading up to my right clavical/cervical area, so my right breast would have gotten more radiation. Of course I have to wait until next week to follow up with U/S and more views of breast due to the holidays. Looking for advise as to what to request or how to procede at the appointment.

I had a sarcoma in my right arm in 2010 and had a bad experience dealing with doctors to get them to treat. I did end up going to the Mayo Clinic in Rochester, MN for that problem. They were great in treating and with the follow up.

I am finding the most information by reading this survivors network. Any advise?

Thanks, Mary

cathyp's picture
cathyp
Posts: 366
Joined: Dec 2009

Hi Mary,

I replied to your message but it got lost with the recent update of this web site.  I probably said it all before in previous posts on this topic posted above. 

Have you had breast MRI's in addition to your mammos?  One every 6 mos alternating. 

I think the key for us is to have someone who is knowledgeable about our late effects from Hodgkins Treatments from our PCP to radiologist, surgeon, oncologist etc.  I have heard the Mayo deals with survivors late effects, glad to hear you had a positive experience there.

I'm sorry that this is happening to you during the Holidays, or at all.  I had a whirlwind of appointments at MSKCC, 3 appts in 10 days last week.  It was emotionally and financially draining,  BUT, all is well for me.  I had a lump at my mx site.  Because of the Hodgkins and Breast Cancer hx, the doctors recommended I get a biopsy right away.  I got the news Friday before Christmas, it was benign!! 

I find comfort knowing all my doctors deal with LT survivors of Hodgkins on a daily basis.  I hope your doctor can manage and speed things up for your results.  Of course I hope you have good news.

All the best,

Cathy

 

sslemoine
Posts: 2
Joined: Jul 2012

Cathy,

Thanks for your posts and information especially on breast cancer risk and rapid heart rate.  I know you go to a late effects clinic and they monitor you closely.  I do have the mammo and breast MRI on rotating 6 mos. basis.  So far so good.  But, on the rapid heart rate have they put you on any beta blocker/blood pressure meds to try to lower your heart rate?  I finally found a cardiologist interested and knowledgable in radiation late effects.  He did all the workups to get a baseline and then started me on Toprol.  I am now on in 2x a day and it has brought my heart rate down slightly -- from ave of 100 - 110 to low 90's.  Has your dr. said what our target heart rate should/could be?  How often does your dr. evaluate your cardio status - - stress test, ultrasound, etc.?  I think I'm supposed to go back to the cardiologist in March, which would be 6 mos. from starting the Toprol.

I appreciate you sharing your experience and knowledge.

Sara

cathyp's picture
cathyp
Posts: 366
Joined: Dec 2009

Sara,

It's wonderful you were able to find a cardiologist who is knowledge about radiated hearts.  My HR is usually 100 or so, 90 when I'm sitting down.  We had discussed medication when the time comes but I guess I haven'r gotten to that point yet.  I know my PCP is still incredulous that it doesn't bother me.  I guess I'm so use to it.  I did have problems last winter when it was above 130. At that time, I had my 6 or 7th bout of shingles in a short time, was traveling to NYC for PT and trying to get ready for Christmas.  Adding to that my long term relationship with my original PCP was deteriorating.  He just didn't get the late effects.  I was sick and stressed.  As things resolved and I changed PCP's, my heart rate got back to my "normal".  My old pcp tried to give me meds for anxiety but I knew it wasn't anxiety.  He didn't buy the HHR is a late effect from rads and chemo. 

My doctor hasn't stated what a target should be just that when I get uncomfortable with it, it may be time for meds.  Now you probably know more that I but I believe we need to be careful on the type of beta blocker we take.  Our lungs may be effected from from rads and chemo so it may be recommended to stay away from the beta blocker that effects the lungs. For me, I'm try**** to minimize taking meds for as long as I can and as I said, I'm not really bothered by the HHR.  Oh, I should mention it gets in the way of what exercising I can do.  I don't last very long on the elipitical, walking is better tolerated for me.

I had been going for yearly echos since radiation ended 23 years ago.  As valve problems started to show up, I started stress echos.  I had the stress echos done every year for 2 yrs when I met my specialist.  Since the valves are stable I now go for yearly rest echos.  I have mild to moderate valve disease. My EF was 62% this last time so that's pretty good. 

Good Luck Sara, stay healthy! 

Cathy

Schnab72
Posts: 1
Joined: Jan 2013

I found this thread yesterday and couldn't believe what I was reading. I was treated for Hodgkins in1987 with mantle radiation followed by radiation to the spleen. I have been treated for hypothyroid attributed to the radiation since 5 years of being hodgkins free. I have since had trouble swallowing  having my esophagus stretched twice and also have a cardiologist watching my leaky heart valves that were discovered by accident. I had no idea that these results of radiation treatment were common and were shared by others.

i was diagnosed with breast cancer on Dec 7th. I am told that I cannot have more radiation and will be having a mastectomy. I would like to have reconstructive surgery at the same time. I've seen two plastic surgeons and am getting conflicting opinions on the type of reconstruction recommended fore someone with past radiation to the chest and abdomen. One Dr. recommends DIEP flap because tissue and skin that has been radiated have a 45% failure with implants leading to either capsular contraction or the skin breaking down while being stretched with expanders. The other Dr. recommends implants saying that the blood vessels in radiated skin in the chest and abdomen are often damaged and won't allow for good blood supply to the transplanted tissue in a flap surgery. 

Has anyone with past radiation for hodgkins had success with either silicone implants with expanders or DIEP flap reconstruction?

cathyp's picture
cathyp
Posts: 366
Joined: Dec 2009

So sorry Schnab that you are facing yet another effect from treatments.  I did not have reconstruction but I am aware of other HD dx with BC survivors that did.  They have posted on the ACOR website under LT Survivors mail list.  Good Luck along this new journey.

Cathy

40yearsandcounting
Posts: 14
Joined: Dec 2012

Schnab72-

 

You and I have a lot in common! I was diagnosed with Hodgkins in 1972 and also had mantle radiation as well as radiation below my abdomen. Also had thyroidectomy. I've had open heart surgery (2004) to replace my aortic valve damaged by radiation. I have a titanium valve and am taking Coumadin now. 

Most importantly I had bilateral masectomies in 2001 with good results. I did not have a positive result for breast cancer at the time but chose the surgery as a "pre-emptive" strike. I had tissue expanders put in at the time of surgery and about 8 months later had saline implants. No problems- none what so ever. Still have the same implants today.  Silicone was not an option at the time but mostly because they had not ironed out all the issues with silicone in general. I apparently did not have enough extra muscle/ fat for the flap surgery. 

As I've said I healed very well from the surgery and i have had LOTS and LOTS of radiation to my chest- probably way more than is recommended. I had original tumors in my neck and chest and a recurrance of same tumor in my chest so I got even more radiation at the same site. I do, in fact, glow in the dark!

I had my surgery here in the Boston area. Wonderful plastic surgeon who I admire greatly. I would certainly suggest second and third opinions before making a decision, but please know that you have a "kindred spirit" out there who is thinking of you and who is here to help in any way i can. You have already seen all the wonderfully supportive folks on this site- I am just one more voice. You are NOT alone!

Take care, please let us know if there's anything we can do to help. Hang in there! Erin

 

Luckyme39
Posts: 3
Joined: Feb 2013

Hi Schnab72,

I just found this website yesterday and can't believe all the similar experiences people have had.  I'm sure that by now you've had your surgery and hope you are recovering well.   I had HL in 1973 at age 19, underwent full mantle radiation therapy for 12 weeks.  The amount of radiation applied at that time was extremely high, so much worse than today.  I also had staging laparatomies to my upper and lower body with spleen removal.  I survived the treatment and I've never had a reccurrence.  I had ductal carcinoma in situ in left breast in 1991, with a modified radical mastectomy.  No radiation or chemo after that.  My plastic surgeon used a tissue expander and silicone implants (one stacked on another for that realistic look), with a silicone implant in the right breast for symmetry.  Was then diagnosed with the same in the right breast in 1998.  By that time the sentinel node procedure was in use, so I had a skin-saving mastectomy with another silicone implant.  Due to the extreme thinness of my tissues and body fat layer due to the past radiation damage, the surgical incision over my right implant just wouldn't heal properly, so my surgeon gave up on it and did a flap procedure to cover the implant.  he used the muscle from my right upper back to wrap around to the front.  That healed well.  The cosmetic effect wasn't as good as the earlier surgery on the left, but what are you going to do?  Most of the time, for reconstruction, the abdominal muscle flap is used to cover the implant.  I couldn't because I didn't have enough body fat.  I understood at the time that the back muscle flap is not the usual route.  I do have some lymphedema in the left arm, due to the removal of too many lymph nodes in my left armpit, and must wear a compression sleeve.  As it stands today, I can say that both types of reconstruction worked for me.  If it's any comfort to you, I've been told by my surgeon that he's never had so little to work with before, and yet, here I am so many years later doing fine with both implants.  If I had it to do over again, I'd still have had the reconstruction surgery.  It puts a "little something between me and the world", as my surgeon used to say. 

Best wishes; I hope to hear how you are doing.

SusanO

 

Cole74
Posts: 23
Joined: Feb 2013

Hey all,

 

I am so happy that I have found a site that talks about long term survival, relapse, and support! I am having a bit of a hard time right now, have had a number of health stuff going on. Let me tell you a bit about me I was diagnosed with HD at the age of 13 in 1988 stage III A only symptom was back pain, after having gone through every test and told all my complents where in my head from the onset of symptoms to diagnosis took 3 years. Spleenectomy and ABVD 12 cycles followed. I was cancer free until I was 25 then was diagnosed with folicular carcinoma of the thyroid, again after complaining for a couple of years about constant fatigue etc. it was finally found and treated however, first the found the contained nodule through altrasound saying that it is highly unlikely to be cancer given that I was never treated with RT. But that given my history they would send me to have one lobe out and if they detemine it to be cancer which the should know in 15 min from romoving it that they will remove the other lobe...well 3 weeks after the first lobe I get a phone call saying um yeah turns out it is maligniant and we need you to have the other half out. Had the sugery follwed by I-131 drink to kill residule tissue. That has now been just over 10 years. 

 

K so now new stuff I have been feeling ill for a few month, bone pain, nasuea, fatigue, slightly swollen axillary nodes, and inner thigh nodes. Random low grade fevers on and off. Rash in center chest sores on upper thighs. Labs including ESR have been a little up and down but nothing drawing attention. I am on madifinial from my nurologist to combat fatigue which some days it helps other days not so much. I feel like I am obsessing lately about how I feel and think the Dr's are missing something. In the last 2 years I have spent 2 weeks at a time in the hospital because high platelets and white cell count not super high but platelets have been 100 normal is between 1 and 400 in canada mine have been 599 white cell count normal is between 4 and 10 I always run about 13 since I had my spleen out however at times they are 25. I was told that high platelets could be because I don't have a spleen. However, most research I have found says that you should return to normal levels. 

 

I can't seem to get my dr to order a CT..or do anything more then blood work which I know lymphoma is not always detected in the blood. So I guess I just need to talk with others who understand. I am just really fustrated! 

 

 

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