Robin Shares About Aortic Stenosis And Cancer (Hodgkin’s Lymphoma)

Robin: You’re right in your feelings, waiting can get awful and your stress and anxiety levels will be up high when you do it. Muy husband had 4 months ago a mitral valve replacement and he was completely asympthomatic and excercising a lot, spinning, swimming. Doctors told him NOT TO WAIT FOR SYMPTHOMS they said: do it now you’re feeling well, the recovery is going to be easier and it did, he didn’t had trouble excercising again after the recovery and now he is cycling, working and looking great, as if nothing ever happened. So don´t be afraid, you’re going to be fine, you seem to be a warrior so if you beated cancer this is going to be a piece of cale for you, believe me. Good luck and keep us posted.

Hi Robin, I understand COMPLETELY what you are feeling! I lived with my aortic stenosis for 4 years before I had my surgery. Feb 11th of this year. I had known I had a murmur since I was twenty two, but did not know the exact cause. Well four years ago I was officially diagnosed with stenosis, but it was mild to moderate. This past year my cardio told me I had a bicuspid aortic valve, which became calcified. I too, have always been active with walking,and gym workouts. I was pretty much asympthomatic , and it really progressed quickly to severe this past year. They recommended I have the surgery. My exercise was limited for 2 1/2 mos before the surgery. I found it extremely depressing, so I decided it was time to go with it. I have had complications with PPS. The pericardial fluid is gone, but I am still experiencing some inflamation. I am walking my 2 1/2 miles several times per wk. I also, am starting to exercise at the gym. The surgery was a complete success, but we still need to resolve the inflamation. I am VERY HAPPY THOUGH to have the surgery BEHIND ME! Things can only get better for me now.

Good luck,
Kathy Mccain

Thank you, Maribel and Kathy! I really appreciate your advice and encouragement! Robin

Hello Robin,

Please let me know how you are coming along. Once you make your decision, and are on the road to recovery, you will have more peace of mind!

Sincerely,
Kathy

Hi Robin,

Thank you for your post. I too have had Hodgkin’s and am facing aortic valve replacement along with coronary artery bypass x 3. It was comforting to me to see your message since I was feeling like the only
person with this scenario. My cancer was almost 40 years ago. I am 63 years old. My diagnosis of aortic stenosis was 6 years ago
and all seemed fine till my most recent 6 month check up in June.

Waiting is very difficult. You will be in my thoughts and prayers.

Sincerely
Sherrye

Hi Robyn,

Yesterday I went for my checkup at my cardiologist and found out that my surgery for my aortic stenosis was sooner rather than later. I had radiation treaments when I was 16 years old that contributed to my current condition. At 43 and a mother of 2 young children, I’m not looking forward to this proposition, and I’ve been hunting for information on the internet ever since.

Thank you for your story. I wish you well!

Hi Robin
Adam pointed me to this blog when I asked him about other heart valve patients who had had Hodgkin’s. My story is very similar to yours.
I am a 54 year old man and had Hodgkin’s when I was 15 for which I received radiotherapy. (Amazing the number of hits you will get if you search for Hodgkin’s / Aortic Valve on google). I didn’t really have any symptoms of Aortic Stenosis (I kayaked regularly) until quite recently but I understand that once you start to get them, things progress quite quickly and in the last few months they have! But here is where my story departs from yours – I have prostate cancer which needs an operation. I can’t have the anaesthetic for this until after the heart is fixed so I am booked in to have my aortic valve replaced on 10th July. My big decision is deciding on which type of valve to have – mechanical which will last for ever but require Warfarin or a bovine one that may need replacing in the future but apparently is the better bet if I ever need more radiotherapy in the future.
It is a while since you posted your story on this blog so Robin I wonder whether you have taken that big step? And also Jil from the last entry who appears to have another similar story – have you had yours?
I would like to keep in touch – it’s always nice to know you aren’t the only person in the world suffering!

All the best

Keith
Orewa, NZ

Robin – I googled “Hodgkin’s/Aortic Stenosis” and found your entry. I know it’s been awhile since your entry, but I feel compelled to comment. I’m a 49 year old female, married for 25 years with two adult children. I had Hodgkin’s when I was 20 years old.

Ten years ago I had Thyroid cancer – had it removed and treated and have been fine. Two years ago I had a bacterial infection that went to my bloodstream. One test lead to another and I was told that my aortic valve would have to be replaced (in 0 to 10 years), and that my lung has a bad area. Last year I had a bowel obstruction caused by adhesions in my small bowel. Last Tuesday I had a mamogram, a 2nd mamogram, an ultrasound and a biopsy, and was told that I almost certainly had breast cancer. (All within less than two hours!) The next day, pathology verified that I have two primary invasive ductal carcinomas – one of which is very aggressive.

In each case, the doctors specifically call-out the mantle cobalt radiation I had in 1980 as the cause. Of course, without the radiation, I wouldn’t even be here to have these long-term side effects. I’m grateful, but can’t help but feel a little…well….disheartened.

Three months of chemo starts next week, followed one month later by a mastectomy of the left (bad) breast, another month of rest, five months of chemo (I believe), then mastectomy of the right breast and full reconstruction. I can’t have any more radiation, so they have to take both breasts. So in about a year I’ll have a new set of TaTa’s, a new head of hair and, hopefully, a new lease on life.

I don’t mean this to be a downer. It’s like playing Whack-A-Mole — just keep knocking them down one at a time.

I hope everything is going well with you now. I’ll visit the site soon hoping for an update on your situation. Peace.

I too had Hodgkin’s at age 18 and now 20 years later am facing aortic valve replacement, possibly mitral also. All of this is due to radiation. We (my parents and I) were specifically told that there were blocks made to make sure this did not happen. I just feel really betrayed by the whole medical system and now, once again, I have to put my trust in them for this surgery. I have also had a significant amount of thyroid disease following this also.

OMG OMG I am reading my own life expereinces in all of yours. To both Robin’s and Steve.

I am almost 56. I had a non Hodgkin’s lymphoma at 21. Had large doses of radiation and chemo.
At age 35 had thyroid CA
At age 50 picked up heart murmur and the aortic valve was moderate until now,
I need 2 replaced. Aotic and Mitral valve.
Needless to say I was in such shock.. Ido not want to go thru all this pain again, I have been ill so much and know as you what it is like to feel yucky !
I am very active and exercise, thou I know my limits.

My kids are grown so that is a blessing. Still I would rather not add this to THE LIST of medical issues.

So glad to know I am not alone.

I live in Poughkeepsie, NY but will go to Mesa AZ to have surgery and recovery time. Lived there for 30 yrs. have a huge support system there.
Will come back to NY for the Rehab.

I bought this book the day after I found out and have made it the BIBLE for now. I am grateful for the different blogs, found a surgeon on the surgeon web site already.

If any one expereinced issues b/c of radiation plus let me know.

nyangela1954@hotmail.com is my email also.

Thanks,
Angela Braxton

Well, here we are. At 22, in 1970 I was diagnosed with and treated with the mantle radiation treatment for, Hodgkin’s disease. I am now on calendar for aortic valve replacement at USC, on April 19, 2011 (about three weeks from now. I keep Adam’s book pretty close. I am not feeling very “up” about this surgery because having had the radiation, my Cardiologist…the same one that Adam had, the amazing Dr. Starnes- has said that scarred (was that the right word?) tissue in there can make this …like the OTHER radiated-for-Hodgkin’s surgeries. I also have ankylosing spondylitis which is big on putting calcium in places, too, so this was a double crosshairs.
My RCA was found “by accident” (by prayer) and stented in 2004; but other than that I have been so very lucky…and got 40 years more and they saved my life. I am apprehensive because radiation makes us all “unique” in this. Hope to get back on later to tell you all how it worked out for ME so, like Adam says, at ,east there will be a little MORE personal info for us guys to not be taken by surprise…and fear…about. Hope Adam does a writing on the radiation phenomena; a doctor interview that are on his blogs. Thank you Adam, for your work!

Wow…Reading these stories is deja vu! I was 19 when I was treated with mantle radiation (1989). I’m now 41 years old and have five children. I had an echo done a few weeks ago for a preop and they said I have moderate aortic stenosis. I have no symptoms. I also have been diagnosed with breast cancer (dcis) stage 0. Fluke that we found the breast cancer so early, negative mammograms, negative ultrasound, positive MRI. MRI was suggested by an Oncologist as an after thought. I was researching treatments for aortic stenosis when I found this page and will be talking to someone ASAP about this!!

Robin- or Adam… I also had Hodgkins, in 1970, and this last April had a new aortic valve put in, by Dr. Vaughn Starnes at USC. Amongst other reasons he was specially chosen because he is familiar with the problems radiation for Hodgkins can do to one’s heart. Also an RCA or LCA can be blocking, ossified at it’s OPENING to the aorta… A prayer got that diagnosed for me, it is now stented.There are many other concerns ‘re mantle radiation; read up on it- or choose Dr. Starnes to go in- the is the best!!! And checks out for possible future radiation-caused damage. Just don’t think God does coincidences. Good luck! Michelle Marrs
There

My Husband (Russell)had Hodgkin disease at age of 14. They also did Radiation on him then and removed his spleen also. But Today 9/11 he has been diagnosis with Heart aorta valve disease and They say it was due to this Radiation he had in past.. We didn’t realize this was so common today. But Russell is still scared to death knowing what is going to happen next. They are doing a Arterial-gram on him first, but Doctor said may have to continue to Open heart surgery to repair this problem. I hope and pray all that has this problem can understand back many years ago they only knew to Help safe Lifes was Radiation. I really don’t think they expected this in the future. Or I hope not anyway..

Same Hodgkin’s disease story as most all of you before me. My doctor Is considering to treat me with a transcatheter aortic valve replacement procedure. I am sceptic because of all the calcification of my aorta caused by the radiation. Some say a thoracotomy is the best approach for the aortic valve replacement. Does anyone have any knowledge regarding this. Also, is there a particular hospital or surgeon recommended? Thanks in advance for your input. Scared out of my mind!

My husband is 45 and had Hodgkin\’s 20 years ago. He just had a cardiac cath last week. We found that he has 4 vessels blocked and needs his aortic valve replaced. He is being evaluated at a University Medical Center right now but he feels like he should get a second opinion somewhere like Cleveland Clinic. We are just so scared because of the scar tissue caused by the radiation. Where is the best place to go for surgery?

Well , All has come True so far, As my first comment about Russell’s test and artery gram . We know due to radiation given for Hodgkin’s disease, it has harden the valves and also sac around heart. He is in Hospital today 10-8-11 awaiting Open Heart to replace maybe 2 to 3 valves(aorta , mitral valves) and do 3 by passes on arteries to and around heart.. If any one has had cancer in early 70′s, Please keep a good check up every year on things like this… But no matter what, you can be damaged due to lack of study or acknowledgment in the 70′s and early 80′s of Cancer and radiation treatments. They have and Do know more about it Now than they did back then…We are at UAB Hospital in Birmingham , Alabama. which is one of the best known hospitals in USA.. So we feel comfortable with our Doctor.. but also worry about complications..