Follow-up care a must post Hodgkins Lymphoma treatment!
It's sometimes so overwhelming trying to orchestrate follow up care isnt it?
I am a registered nurse and finally researched a way to do this since I was not happy with results of tests being overlooked and relaxed medical care, we have to be so on top of this. I sought out my cancer center in Boston and found they had a survivors clinic and it has been a big help.
At age 16 I had Hodgkins, treated with mantle radiation and splenectomy, at age 37 I hadbreast cancer, mastectomy with reconstruction and 6 mos of chemo..CMF, at age 50 Renal cell cancer, treated with l kidney removal.Now being evaluated for a thyroid nodule..fine needle aspiration is inconclusive so trying to decide if it should be removed. Problem being? the mantle radiation from almost 40 years back makes it a risky surgery. I have been on synthroid then levothyrovine for 34 years. I have had 2 basal carcinomas removed from my back (radiation field).
I would like to summarize from what I have researched,and learned at the survivors clinic what your highest risks are:
Breast cancer - don't WAIT! or watch a lump, have it biopsied (mammography does NOT read everything)
Lung Cancer- if you smoke, do what you can to stop!! Mantle radiation intensifies your lung cancer risk- get periodic CT scan (not too often due to it adds more radiation to you)
Thyroid cancer- get a baseline ultrasound tomorrow!!! get lab work to determine if med needed and get follow up scans
Cardiovascular disease- have annual lipid profile drawn and any abnormal values should be treated AGGRESSIVELY, more so than 'nornal' patients because we are all high risk for heart attack and stroke. Get echo cardiogram and stress tests every 5 years and do not ignore cardiac symptoms!
Dermatology- have skin checked by a dermatologist every other year
Pulmonary- get a set of PFT's done (pulmonary function tests and an annual chest XRay
Infection- not all clinicians will be aggressive enough to give you antibiotics for a fever or potential bacteria infection- without a spleen or with radiation to a spleen you cannot fight infection as others do- insist or find another medical doctor if they do not treat you properly for fever etc- sepsis is a huge risk (get annual flu shot, and pneumonia and mengitis vaccine every 5 years)
I know I probably left things out! But all the above things are very important to present to your medical provider.
Here is a link to one article that may be helpful:
Best to all of you out there and glad we have each other!
Tuscany57 (not from there but wish I was lol)
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