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Hodgkin's - mantle radiation - lungs / heart / breast cancer

RachelF
Posts: 3
Joined: Feb 2008

I'm new to CSN. I'm looking for input from 35-40 y.o. female(s) who have similar background to mine to exchange information, knowledge and experiences with long-term side effects. I was diagnosed in 4/1988, had a splenectomy and laperotomy, and 3+ months mantle/abdomen radiation. One of my lungs was radiated for a month before being blocked. I've never sought out anyone to share this with, but as I am more aware of possibilities of 2nd cancers and heart disease issues I would like to increase my awareness. I'm very athletic and since remission have always struggled w/shortness of breath and compromised cardiovascular performance in general. I have zero-tolerance to spicy foods (mouth pain). My thyroid was irradiated and is nonfunctional so I take synthetic hormones but still have extreme sensitivity to cold, v. dry skin/hair esp in winter, and I believe I have lower energy than I should considering my healthy habits (plenty of sleep, great nutrition and physical activity). I'd also appreciate any advice about finding an oncologist who could focus on my specific Hodgkin's long-term risks (lymphoma, lung, thyroid, breast cancers). Should I let that MD refer me to a cardiologist for preventative screening? Many thanks.

40yearsandcounting
Posts: 14
Joined: Dec 2012

I am very new to this so I apologize in advance if I'm not doing something right!!

I was so struck by your story as it so closely mimics my own. I was diagnosed with Hodgkins in 1972 at age 15. So we were going through all that at the same time!! I also had trouble with my thyroid and ended up with a thyroidectomy. I also had open heart surgery to replace my aortic valve. Pure hell that one. I had several complications and ended up in the hospital for the better part of 6 weeks. I had a lung biopsy a few years ago for "suspicious" nodules which ended up being scar tissue, thank goodness. I elected to have bilateral mastectomies about 10 years ago as a preventative measure. My most recent issue is with my voice. About a year ago my left vocal chord essentially stopped working. I'm left with rather raspy voice and occasionally difficulty swallowing. I'm not sure I would be a candidate for surgery to correct this as I'm sure there is ongoing concern about more scar tissue from all that radiation.

I'm so sorry that you are having to deal with yet another health issue. It does seem that the negative effects of radiation turns out to be the gift that keeps on giving!! You sound like an incredibly strong, determined person who has already weathered your share of obstacles. I wish I could help but I don't know much about myocardial fibrosis and Hodgkin's. I can only say that I will be thinking of you, a "kindred spirit," and praying that you get through these ordeals with flying colors. You deserve that, and more!! Take care- best of luck to you. Hang in there! You are not alone!!

40yearsandcounting
Posts: 14
Joined: Dec 2012

I am very new to this so I apologize in advance if I'm not doing something right!!

I was so struck by your story as it so closely mimics my own. I was diagnosed with Hodgkins in 1972 at age 15. So we were going through all that at the same time!! I also had trouble with my thyroid and ended up with a thyroidectomy. I also had open heart surgery to replace my aortic valve. Pure hell that one. I had several complications and ended up in the hospital for the better part of 6 weeks. I had a lung biopsy a few years ago for "suspicious" nodules which ended up being scar tissue, thank goodness. I elected to have bilateral mastectomies about 10 years ago as a preventative measure. My most recent issue is with my voice. About a year ago my left vocal chord essentially stopped working. I'm left with rather raspy voice and occasionally difficulty swallowing. I'm not sure I would be a candidate for surgery to correct this as I'm sure there is ongoing concern about more scar tissue from all that radiation.

I'm so sorry that you are having to deal with yet another health issue. It does seem that the negative effects of radiation turns out to be the gift that keeps on giving!! You sound like an incredibly strong, determined person who has already weathered your share of obstacles. I wish I could help but I don't know much about myocardial fibrosis and Hodgkin's. I can only say that I will be thinking of you, a "kindred spirit," and praying that you get through these ordeals with flying colors. You deserve that, and more!! Take care- best of luck to you. Hang in there! You are not alone!!

nlmy
Posts: 2
Joined: Feb 2013

Hi!  I, from Ohio and CT (now living in CT), got Hodgkins Disease in 1973 at age 12.   I had lots of chemo, prednisone and MOPP Mustard, Vancrystine.  I had extensive radiation in 1974 as cancer was detected in my lungs.  I was then healthy for 25 years...wonderful years growing up with my siblings, marriage.  During 3rd pregnancy (3 kids! so grateful!) I developed MFH (bone cancer).  I have a steel/cadaver bone right femur - walk with a limp.  But, since then I have been healthy - all well - until last year I developed thyroid cancer.  I am managing thyroid cancer fine. My lungs in the past year have not been well...the talk is COPD.  Just joined tonight as I wanted to learn more about Hodgkins survivors and these other issues that seem to beat on us as we age. I have fabulous doctors here in CT and have had many years of terrific health.  My best to you. Take care, Nancy

LBP53
Posts: 2
Joined: Apr 2013

I was 27 when I was diagnosed,I am now 53. I went through all the usual tests including lymphangiogram  (which thankfully they don' t do anymore). I received 3 months of mantle radiation to the left side of chest, neck abdomen. I have chronic anemia as the radiation affected my bone marrow, and I am hypothyroid. I have SOB with cardio exercises due to scar tissue in the upper lobe of my left lung. Saying all of that, I have led a very active life, tae kwon do in my 40's stopped because of a fx wrist. I am now doing Pilates 4 days a week..and yes I have to push my self, but the more I exercise the larger lung capacity I have and my breathing improves. I am still seeing my hematologist 2x per year and he has referred me to a hematologist oncologist who specializes in the issue of breast cancer in peri menapausal women who have had mantle radiation. It freaks me out that I am high risk, but keeping positive and enjoying life.

LBP53
Posts: 2
Joined: Apr 2013

I was 27 when I was diagnosed,I am now 53. I went through all the usual tests including lymphangiogram  (which thankfully they don' t do anymore). I received 3 months of mantle radiation to the left side of chest, neck abdomen. I have chronic anemia as the radiation affected my bone marrow, and I am hypothyroid. I have SOB with cardio exercises due to scar tissue in the upper lobe of my left lung. Saying all of that, I have led a very active life, tae kwon do in my 40's stopped because of a fx wrist. I am now doing Pilates 4 days a week..and yes I have to push my self, but the more I exercise the larger lung capacity I have and my breathing improves. I am still seeing my hematologist 2x per year and he has referred me to a hematologist oncologist who specializes in the issue of breast cancer in peri menapausal women who have had mantle radiation. It freaks me out that I am high risk, but keeping positive and enjoying life.

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

Hi LBP53,

Lymphangiogram, "just a few needles" is what my doctor said!

Sorry to hear of your SOB.  I am interested in your pilates reference.  I'm going to start this to help with the radiation fibrosis syndrome.  I was curious , do you go for regular cardiac screening such as stress echos?  As you may know, our risk for cardiac complications is high and that sometimes manifests as SOB. 

Good luck with your onco regarding your breat cancer risk.  Mine appeared 18 years after mantle radiation.  Right before this I was asking to schedule prophylactic mastectomies.  I wish I had done it many years prior.  Keep us updated if you would like with your progress and the Dr's recommendations.

Cathy   HD 1989- RADS   HD 1994- ABVD   IDC 2007- DBL MX

nasman's picture
nasman
Posts: 1
Joined: Jun 2013
Hello All,
 
I was diagnosed with stage 2 Hodgkin's Disease in 1986. I underwent a free months of ABVD chemo, followed by two weeks of mantle radiation, then a few more months of chemo. They removed Bleomycin from the last few of my treatments due to poor pulmonary tests. I've got scarring (pulmonary fibrosis), asthma a calcified valve/mumur, arterial stenosis, get run down & sick easy. Have gum issues, teeth, & get very tired/short of breath at times even without exertion. I have joint/bone issues as well-particularly in neck, back, shoulders. I get told my thyroid is within "normal parameters but don't feel normal. I had issues with bloating/weight gain even when adhering to a strict diet & aggressive workout regimen for years. I let this fall by the wayside in 2005  when I tore both rotator cuffs & both viruses became active. I was slow to recuperate & my boss at that time was unsupportive of my medical needs, diagnosis & FMLA certification. He changed my job to one of much lower standing & ultimately fired me for "lack of documentation" because a doctor wrote a re-certification on his office letterhead instead of the HR form he had been given. I took legal action, but ultimately only received a small settlement.
 
At times my ability to work is impacted. Bosses have been mixed in understanding. I also had both Epstein-Barr & Cytomegla Viruses. Between the two I have been told they are responsible for Hodgkins Diease. Occasionally if I get ill or run down, they flare up again, which can leave me sick for months. '
 
I am both sorry to hear you share many of the same issues & relieved that I'm not crazy to feel so affected by these treatments & side effects. I find it very frustrating. Don't get me wrong, I am very glad to be here. My wife & I have three children, & have my own businesses. My youngest son has autism & I often wonder if my treatments my have ultimately genetically effected me & hence resulted in or contributed to his condition. 
 
Has anyone had any experience with having children with disabilities ? 
cathyp's picture
cathyp
Posts: 366
Joined: Dec 2009

Hi Nasman,

My first child was born 3 yrs after my radiation treatment and my second 2 years after ABVD.  They do not have any medical or disability issues.  I do worry down the line for any genetic abnormalities I may have passed on because I have a braca mutation of unknown significance and a clotting mutation.  Who knows what else... considering.

Hang in there!

Cathy

SCL
Posts: 1
Joined: Sep 2013

If you have labile hypertension and orthostatic intolerance and carotid arteriosclerosis, you may be interested in the following article.

Baroreflex Failure as a Late Sequela of Neck Irradiation http://hyper.ahajournals.org/content/42/1/110.full 

The spectrum of the clinical presentation is quite broad. The acute form is characterized by marked hypertensive episodes. The subacute form is characterized by labile blood pressure, orthostatic tachycardia or intolerance, and in cases of "selective" baroreflex failure, malignant vagotonia and severe bradycardia.

Patients 1 and 2 were treated with clonidine, angiotensin-converting enzyme, which improved their clinical status.

 

sal1993
Posts: 2
Joined: Feb 2014

I received the most radiation 23 years ago for hodgkins lymphoma. Currently, I have been diagnosed with radiation heart disease (cardiopmyopathy) and now I have difficulty breathing with any amount of exerting energy. Dr.'s cannot figure out why. Anyone else experiencing these problems or know a Dr. who can help? I have very little energy, constant dry cough, and no appetite.

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