Follow-up care a must post Hodgkins Lymphoma treatment!

Tuscany57

Hi,
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:
http://www.cancersurvivorsproject.org/hd2008longtermeffectarticle.pdf

Best to all of you out there and glad we have each other!

Tuscany57 (not from there but wish I was lol)

jimwins

Thanks for doing this as a new discussion topic
I read the one you posted to a discussion started in
the year 2000.

Thanks for sharing.

Jim

Tuscany57

I forgot this:
Colon!- get your stools tested for blood on annual physicals and colonoscopy at least every 5 years! More often if abnormalities

bluerose

Tuscany57 said:

I forgot this:
Colon!- get your stools tested for blood on annual physicals and colonoscopy at least every 5 years! More often if abnormalities

Perini Clinic?
Hello. Was the survivors clinic in Boston at Dana Farber at the Lance Armstrong Clinic/Perini Clinic?

I am a 25 year NHL survivor with many side effects from treatments.

Thank you.

Blessings,

Bluerose

Tuscany57

bluerose said:

Perini Clinic?
Hello. Was the survivors clinic in Boston at Dana Farber at the Lance Armstrong Clinic/Perini Clinic?

I am a 25 year NHL survivor with many side effects from treatments.

Thank you.

Blessings,

Bluerose

Survivors Clinic
yes it is that clinic, are you also seen there?

bluerose

Tuscany57 said:

Survivors Clinic
yes it is that clinic, are you also seen there?

I wish
No I haven't been seen there but found out about it as an adult survivor of adult diagnosed cancer and was looking for a clinic who catered to my group of survivors. There are tons of clinics for late effects for those diagnosed as children but not so many for those diagnosed as adults except I found the Perini Clinic and that was the only one. I just wondered if more had started up as this group of survivors becomes larger with time.

I called them actually and talked to a nurse practitioner, this was about 7 years ago I guess now, and they said to send them all my records and they could see what they could do but it was far too expensive for me to travel down there and to afford all the testing and specialists I would have to attend. Slowly we are coming around in Canada to recognizing late effects but it's a slow go up here.

All the best,

Bluerose

CountryGal7557

bluerose said:

I wish
No I haven't been seen there but found out about it as an adult survivor of adult diagnosed cancer and was looking for a clinic who catered to my group of survivors. There are tons of clinics for late effects for those diagnosed as children but not so many for those diagnosed as adults except I found the Perini Clinic and that was the only one. I just wondered if more had started up as this group of survivors becomes larger with time.

I called them actually and talked to a nurse practitioner, this was about 7 years ago I guess now, and they said to send them all my records and they could see what they could do but it was far too expensive for me to travel down there and to afford all the testing and specialists I would have to attend. Slowly we are coming around in Canada to recognizing late effects but it's a slow go up here.

All the best,

Bluerose

Slow Go in US also
late effect clinics is a slow GO in the US also for adult survivors. I sometimes think I should start my own Support Group, just to bring survivors together and learn from each other - but then I always return to this site. Best group of knowledgeable people right here!!

Hugs
Janelle

truckingalong

bluerose said:

I wish
No I haven't been seen there but found out about it as an adult survivor of adult diagnosed cancer and was looking for a clinic who catered to my group of survivors. There are tons of clinics for late effects for those diagnosed as children but not so many for those diagnosed as adults except I found the Perini Clinic and that was the only one. I just wondered if more had started up as this group of survivors becomes larger with time.

I called them actually and talked to a nurse practitioner, this was about 7 years ago I guess now, and they said to send them all my records and they could see what they could do but it was far too expensive for me to travel down there and to afford all the testing and specialists I would have to attend. Slowly we are coming around in Canada to recognizing late effects but it's a slow go up here.

All the best,

Bluerose

Question
Hi, Bluerose,

Thanks for sharing the information. I am looking for survivors who got HL diagnosis after age 50. I do not know many or even anyone who has that. Would be nice to find them!

Best,
Liz