Robin Shares About Aortic Stenosis And Cancer (Hodgkin’s Lymphoma)
There never seems to be a shortage of inspirational emails waiting for me in my inbox.
Recently, I exchanged emails with Robin, a fellow patient recently diagnosed with aortic stenosis. As you can read, this is the second major health issue for Robin. Several years ago Robin fought cancer (Hodgkin’s lymphoma).
In her note to me, Robin mentioned something that I had never heard before - the negative impact of radiation on heart valve function. Specifically, Robin noted that her medical team believes that her stenotic valve was caused by radiation treatments used to fight the cancer.
I thought you might want to read more about Robin, so I received her approval to post her email in this blog. Here it is:
Adam,
I just found your website yesterday upon scouring the internet for information about aortic valve replacement. I just got the news yesterday that my aortic stenosis is now in the severe category and I will probably need surgery within the next year. This came as quite a shock to me. I’ve known about the aortic stenosis for about eight years now but I’ve always been in the mild to moderate category with no symptoms and no limitations. It was shocking to me to learn how far the aortic stenosis has progressed since my last echo in August, 2007. I am scared to death and can’t get my mind off of what lies ahead for me.
I am a 47 year old married woman with a loving husband and a 13 year old son. I developed Hodgkin’s lymphoma when I was 19 years old for which I received radiation therapy. The docs think that the radiation caused my stenosis. I am very healthy and active. I go to the gym at least 5 days a week and, up until yesterday, did pretty strenuous exercise.
I have no symptoms of aortic stenosis. My doctor says that they hesitate to operate until I start developing symptoms. However, he does want me to severely limit my exercise. This represents a huge change in my lifestyle and I am very depressed about it. My feeling is, if I have to have the surgery within the next year, why not do it now while I’m still feeling good rather than living in limbo until I start feeling bad. I visit my cardiologist in two weeks and will discuss my feelings with him.
Regards,
Robin Harding
Manchester, NH
P.S. I received your book yesterday and read it cover to cover. I can’t tell you how much better I feel after reading your story and knowing that there is light at the end of the tunnel. My husband is reading it now
and it should prove to be most helpful to him since he will be my primary caregiver. I feel so fortunate that I found you, your website and your book. Thank you!
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June 11th, 2008 at 6:31 pm
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.
June 11th, 2008 at 11:43 pm
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
June 13th, 2008 at 7:08 am
Thank you, Maribel and Kathy! I really appreciate your advice and encouragement! Robin
June 13th, 2008 at 10:20 am
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
July 25th, 2008 at 5:56 pm
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
November 7th, 2008 at 6:54 am
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!
May 28th, 2009 at 5:06 am
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
July 4th, 2009 at 3:45 am
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.
July 10th, 2009 at 9:56 pm
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.