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Squamous Cell Carcinoma post transplant

Posted by hello1234 @hello1234, Feb 8 8:07pm

Hi Transplant Family,
I hope everyone is well. I had my kidney transplant in July 2020. I just received a call from my local dermatologist. The spot on my face is squamous cell carcinoma. Last year, I received the same call for a spot on my chest. I went on the internet and read some scary statistics.
Has anyone experienced multiple skin cancers post transplant? Was your immune suppression meds changed or reduced? What was your experience? Did everything work out okay long term?
Thanks everyone and please don't forget your sunscreen.

Interested in more discussions like this? Go to the Transplants Support Group.

Mentor
Ginger, Volunteer Mentor | @gingerw | Feb 9 1:10pm
In reply to @hello1234 "Thanks so much @gingerw 😊 I am curious if your husband had any reduction or changes..." + (show)
@hello1234

Thanks so much @gingerw 😊
I am curious if your husband had any reduction or changes to his immune suppression meds after the two squamous cell carcinoma diagnosis? Is your husband on TAC and MFF like me?
Thanks so much for reminding me that we are all in this together and the diagnosis is not as scary as it sounds. That means a lot Ginger!

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@hello1234 He has not had any change in his meds, and yes, he is on tacrolimus and MFF like you!
Ginger

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1 reply
hello1234 | @hello1234 | Feb 9 1:24pm
In reply to @gingerw "@hello1234 He has not had any change in his meds, and yes, he is on tacrolimus..." + (show)
@gingerw

@hello1234 He has not had any change in his meds, and yes, he is on tacrolimus and MFF like you!
Ginger

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Thank you @gingerw 😊 I don't think my immune suppression meds will be changed or adjusted either. My meds were reduced for CMV, and then reduced for BK virus, so I am currently at a reduced level. The only other option would be to change the medication. But I don't think that is recommended at this time. Thank you again Ginger!

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mollyv | @mollyv | Feb 10 8:06am

@hello1234 I am 12 years post kidney transplant. I’ve been on Tacrolimus and Imuran since nearly the beginning. They started me on Cellcept and took me off the Cellcept right away because it made me so sick.
Since then, I’ve had countless Mohs procedures, cryotherapy and “scrapes”. I have keratoses all over. I see the Dermo 2 times a year unless something pops up. In the past couple of years this has really increased. I’ve had 6 squamous cell spots and 5 basal cell just since June. Just recently they took me off the Imuran and switched to Myfortic, but I’ve been miserable ever since. Hoping to go back to Imuran.
I live in Florida in the winter and am hyper-vigilant about sun protection. I am a pale Irish woman, so I was already prone. I guess the baby oil and album covers with tin foil years may have been a mistake!😂

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1 reply
hello1234 | @hello1234 | Feb 10 8:24am
In reply to @mollyv "@hello1234 I am 12 years post kidney transplant. I’ve been on Tacrolimus and Imuran since nearly..." + (show)
@mollyv

@hello1234 I am 12 years post kidney transplant. I’ve been on Tacrolimus and Imuran since nearly the beginning. They started me on Cellcept and took me off the Cellcept right away because it made me so sick.
Since then, I’ve had countless Mohs procedures, cryotherapy and “scrapes”. I have keratoses all over. I see the Dermo 2 times a year unless something pops up. In the past couple of years this has really increased. I’ve had 6 squamous cell spots and 5 basal cell just since June. Just recently they took me off the Imuran and switched to Myfortic, but I’ve been miserable ever since. Hoping to go back to Imuran.
I live in Florida in the winter and am hyper-vigilant about sun protection. I am a pale Irish woman, so I was already prone. I guess the baby oil and album covers with tin foil years may have been a mistake!😂

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Thank you @mollyv 😊
It's great hearing from you! Your response made me feel much better. I am not alone with all of my squamous and basal removals.
When you had Mohs surgery, did the dermatologist take off sections and look under the microscope? Was there a pathologist or did the doctor check under the microscope?
I love your sense of humor with the baby oil and album covers with silver foil. It sounds like you and I grew up during the same time in history!
Thank you again @mollyv for making me feel better about this. I was getting scared about the repeat squamous.

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mollyv | @mollyv | Feb 10 8:49am

@hello1234 For Mohs, the surgeon does small sections, then takes it the lab to see if they got the margins and they repeat this until it comes back clean. For scrapes, they just scrape the area and cauterize the spot. I’m not going to do any more scrapes because they take way too long to heal. I had one in December and it was still slightly oozing a week ago. You need to find a good dermatologist who understands the special needs of transplant patients.

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1 reply
hello1234 | @hello1234 | Feb 10 8:59am
In reply to @mollyv "@hello1234 For Mohs, the surgeon does small sections, then takes it the lab to see if..." + (show)
@mollyv

@hello1234 For Mohs, the surgeon does small sections, then takes it the lab to see if they got the margins and they repeat this until it comes back clean. For scrapes, they just scrape the area and cauterize the spot. I’m not going to do any more scrapes because they take way too long to heal. I had one in December and it was still slightly oozing a week ago. You need to find a good dermatologist who understands the special needs of transplant patients.

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@mollyv Thank you so much for the heads up about the "scraping". The slow healing process is good to know.
How did you find your specialist dermatologist?
I find it very difficult to find knowledgeable local doctors that understand transplant.
Which sunscreen do you use?

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1 reply
Mentor
Rosemary, Volunteer Mentor | @rosemarya | Feb 11 10:45am
In reply to @hello1234 "@mollyv Thank you so much for the heads up about the "scraping". The slow healing process..." + (show)
@hello1234

@mollyv Thank you so much for the heads up about the "scraping". The slow healing process is good to know.
How did you find your specialist dermatologist?
I find it very difficult to find knowledgeable local doctors that understand transplant.
Which sunscreen do you use?

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@hello,
Here is a related discussion:
- Anyone have tips on sun protection?
https://connect.mayoclinic.org/discussion/anyone-have-tips-on-sun-protection/
.
and while you are there be sure to check out the MODERATOR'S NOTE that has been added.
"The knowledge exchange shared in this discussion helped to create this article written for the Mayo Clinic app. Knowledge for patients by patients and beyond Mayo Clinic Connect.
– Transplant recipients share their best sun safety tips https://www.mayoclinic.org/CPT-20514169

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Frayaz | @frayfl | Feb 11 12:40pm

Kidney transplant, prograf and myfortic.
Squamous on fore arm July 2024 Mohs surgery July 2024, large deep incision and 6 in scar on arm.

Also diagnosed with squamous on ear and side of nose. Did not want to lose chunks of flesh from those areas.

Dermatologist/Mohs surgeon said there was only one option to Mohs was some type of superficial radiation available only in their office.

Not happy with the response, I got a referral to cancel specialist, the cancer doc recommended 20 radiation treatments. I got the treatments, minor side effects redness/scaling in treated areas gone about a month after treatment ended. No scarring cancer gone.

The trade off was a month of radiation treatments vs a single Mohs surgery with risk of facial scarring/disfigurement and possible multiple reconstruction surgeries.
I expect more squamous cell cancer and will definitely choose radiation surgery over Mohs surgery.

If you are diagnosed with squamous or basil cell skin cancer I recommend that you explore radiation treatment with a cancer center BEFORE proceeding with Mohs surgery.

See attached photos

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1 reply
hello1234 | @hello1234 | Feb 12 4:39am
In reply to @frayfl "Kidney transplant, prograf and myfortic. Squamous on fore arm July 2024 Mohs surgery July 2024, large..." + (show)
@frayfl

Kidney transplant, prograf and myfortic.
Squamous on fore arm July 2024 Mohs surgery July 2024, large deep incision and 6 in scar on arm.

Also diagnosed with squamous on ear and side of nose. Did not want to lose chunks of flesh from those areas.

Dermatologist/Mohs surgeon said there was only one option to Mohs was some type of superficial radiation available only in their office.

Not happy with the response, I got a referral to cancel specialist, the cancer doc recommended 20 radiation treatments. I got the treatments, minor side effects redness/scaling in treated areas gone about a month after treatment ended. No scarring cancer gone.

The trade off was a month of radiation treatments vs a single Mohs surgery with risk of facial scarring/disfigurement and possible multiple reconstruction surgeries.
I expect more squamous cell cancer and will definitely choose radiation surgery over Mohs surgery.

If you are diagnosed with squamous or basil cell skin cancer I recommend that you explore radiation treatment with a cancer center BEFORE proceeding with Mohs surgery.

See attached photos

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Excellent information about radiation treatment @frayfl 😊
Thank you for the heads up about this alternative treatment! It sounds like radiation is especially helpful if the cancer is located on the face.

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