Trying to learn about Sarcomatoid Renal Cell Carcinoma (SRCC)

Posted by caragiver1 @caragiver1, Apr 19, 2022

RCC with 60-70 % sarcomatoid features
My husband on Dec 2 went to ER for lot of blood in urine !,we thought caused was from a kidney stone ! Because 1 year before same thing happened only it wasn’t as bad as this time /husband was sent to urologist back then who but nothing was done // fast forward to dec 2nd 2021 at ER we found out from CT there was a 7.8x5.6 tumor in left kidney which was removed and biopsied and it was then we were told Husband has stage 3 -grade 4 Renal cell carcinoma with 60-70% sarcomatoid features // my husband started Keytruda !! .. I’m hearing good reports about keytruda but everything I’ve researched on Sarcomatoid feature is poor !, I’m reading the higher the percentage the poorer the prognosis;.( I am hoping to learn more about this awful cancer !.. thank you in advance for any insight .

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

Welcome, @caragiver1.
It can be challenging (and frightening) to find easy to understand information about rarer types of cancer. I found this website to get you started.
- Sarcomatoid renal (kidney) cancer https://www.cancerresearchuk.org/about-cancer/kidney-cancer/stages-types-grades/types-grades/sarcomatoid-renal
"Sarcomatoid renal cancer is a rare type of kidney cancer.
Most kidney cancers start in cells called clear cells, but they can start in other cells too. Almost any type of renal cell cancer can become sarcomatoid. This means that the cells of the cancer look like the cells of a sarcoma (cancer of the connective tissues, such as muscles, nerves, fat, blood vessels and fibrous tissue)."

Keytruda (pembrolizumab) is often discussed in the lung cancer group. You might find these discussions useful:
- Started immunotherapy maintenance: What side effects can I expect? https://connect.mayoclinic.org/discussion/keytrudaalimta-maintenance-side-effect/
- Immunotherapy: Keytruda (pembrolizumab) https://connect.mayoclinic.org/discussion/immunotherapy-and-chemo/

@formydad might also have some insights to share.

Caragiver, when did you husband start treatment? Will this be a maintenance treatment, in others words, treatment continues rather than a set number of treatments. And, most importantly, how are you doing?

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@colleenyoung

Welcome, @caragiver1.
It can be challenging (and frightening) to find easy to understand information about rarer types of cancer. I found this website to get you started.
- Sarcomatoid renal (kidney) cancer https://www.cancerresearchuk.org/about-cancer/kidney-cancer/stages-types-grades/types-grades/sarcomatoid-renal
"Sarcomatoid renal cancer is a rare type of kidney cancer.
Most kidney cancers start in cells called clear cells, but they can start in other cells too. Almost any type of renal cell cancer can become sarcomatoid. This means that the cells of the cancer look like the cells of a sarcoma (cancer of the connective tissues, such as muscles, nerves, fat, blood vessels and fibrous tissue)."

Keytruda (pembrolizumab) is often discussed in the lung cancer group. You might find these discussions useful:
- Started immunotherapy maintenance: What side effects can I expect? https://connect.mayoclinic.org/discussion/keytrudaalimta-maintenance-side-effect/
- Immunotherapy: Keytruda (pembrolizumab) https://connect.mayoclinic.org/discussion/immunotherapy-and-chemo/

@formydad might also have some insights to share.

Caragiver, when did you husband start treatment? Will this be a maintenance treatment, in others words, treatment continues rather than a set number of treatments. And, most importantly, how are you doing?

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Thank you for replying// husband has immunotherapy every 3 weeks for a year then I don’t know !,it’s whatever happens with the treatment !, how he responds to treatment// he’s had 5 treatments so far // with a few side effects !. Headaches , fatigue body aches // oncologist is very positive //.husband and I like him a lot !, from what I’ve read about sarcomotoid cancer it’s a poor prognosis// the latest articles on subject are 9 months ago all it states is that they’ve had positive response from check point inhibitors but the over all survival for this type of cancer is poor // I am feeling overwhelmed with information that I’ve found online // searching and praying for good news // praying for all those who have Cancer 🧡

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@caragiver1

Thank you for replying// husband has immunotherapy every 3 weeks for a year then I don’t know !,it’s whatever happens with the treatment !, how he responds to treatment// he’s had 5 treatments so far // with a few side effects !. Headaches , fatigue body aches // oncologist is very positive //.husband and I like him a lot !, from what I’ve read about sarcomotoid cancer it’s a poor prognosis// the latest articles on subject are 9 months ago all it states is that they’ve had positive response from check point inhibitors but the over all survival for this type of cancer is poor // I am feeling overwhelmed with information that I’ve found online // searching and praying for good news // praying for all those who have Cancer 🧡

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I don't know if you're like me, but I find the internet very helpful to gather information. But then I reach a point where it's not enough and too much at the same time. What I mean by that is that the information gathering helps inform me, even with the tough realities of poor prognosis, etc. But after a while, the information is no longer specific enough to relate to my situation and it all becomes overwhelming.

I hope that your information gathering stage has given you information to help ask questions of your husband's cancer team and to prepare for what might be coming. Next phase is to concentrate on the two of you - how he is doing AND how you are doing.

What helps you when you feel overwhelmed?

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Online info is helpful and overwhelming at times . Your right the important thing is stay positive and take each day as a Blessing 🧡🙏🧡 prayers for all who are fighting Cancer

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@caragiver1

Online info is helpful and overwhelming at times . Your right the important thing is stay positive and take each day as a Blessing 🧡🙏🧡 prayers for all who are fighting Cancer

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Checking in @caragiver1. How are you and your husband doing?

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Hello and thank you for checking in on Us !,we are doing okay Husband is still dealing with fatigue ,body aches ,some blurred vision and nauseous at times from keytruda !. But so far it’s manageable Doctor gave him pain and nausea medication ..

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