My tumor is of questionable primary origin. Questionable in that Onc thinks it is yet Dermatologist says no. Nevertheless, squamous cells were found so treatment was necessary yet I can’t help but be concerned that a primary has yet to be located. This is for Metastatic cSSC. Chemo ( Cisplatin) and radiation together.
@janiebill, I can understand your concern about finding the primary. You can have squamous cell carcinoma on any part of your body. Chemo and radiation together is standard treatment for metastatic SCC regardless of where it started.
@janiebill, I can understand your concern about finding the primary. You can have squamous cell carcinoma on any part of your body. Chemo and radiation together is standard treatment for metastatic SCC regardless of where it started.
Thanks for responding. Yes, I’ve finished radiation and chemo. As of now I’m not having immunotherapy as the last 2 PET scans showed no activity. I did chemo( cisplatin) and radiation at the same time. It really did a number on me so to speak. Unfortunately, I’m dealing with lymphedema in my hand and arm with pain on my chest and right side. Hopefully I’ll get relief soon!
Thanks for responding. Yes, I’ve finished radiation and chemo. As of now I’m not having immunotherapy as the last 2 PET scans showed no activity. I did chemo( cisplatin) and radiation at the same time. It really did a number on me so to speak. Unfortunately, I’m dealing with lymphedema in my hand and arm with pain on my chest and right side. Hopefully I’ll get relief soon!
Hi @rita8898, welcome to Connect. I'd like to introduce you to @cindylb whose husband also has cancer of unknown primary. It can be such a frustrating diagnosis.
While we wait for others to join the conversation, can you tell us a bit more about your situation? Where is the cancer located? What treatments, if any, have you had?
My name is Sam. I live in wales in the uk. I was diagnosed with CUP the first week of February. I’m 54 with a 12 year old daughter that I gave birth to at 42. Only 1 and she’s a joy! We are in a rare group and the pathology is crucial although in so many cases they often never find the primary as someone says in a post, our immune system already killed it off but sadly after spreading. I have adonacarsenoma. Forgive poor spelling. It’s in my lymph nodes in pelvis and outer lining of stomach. They are treating me with chemo (4rounds) palliative and attacking it as if it is a gynaecology cancer (which I actually believe it is- was at the dr surgery all the time for over a year with elevated CA125 but they kept missing it and then the rash around torso in September- told was menopause. 😔 which it obviously wasn’t. I have double dose chemo paclitaxol and carboplatin. I’ve only done one round and next Tuesday I’ll go for the second. I’m eating a diet of cancer starving foods and take a lot of supplements plus IV vit C because I have to be able to tell my child that I did everything I could. She knows I have cancer but not how serious it is. As a Christian, I trust the Lord completely and despite the horrific experience of it all, know His blessings in abundance. He knows mine and my family’s future and that keeps me. Thanks for letting me be a part of your group and I’m so sad about the dear lady of 44. Praise God too for the wonder of 6/7 years on for the lady’s husband with CUP. We may be far away physically but we are close in our similar circumstances.
My daughter age 44 was diagnosed in January with cancer. She has been treated with chemo for 6 treatments. The cancer is in her liver, Legions on her bone and seems to be spreading. She is very weak and unable to walk any distance. After many test the doctors at Mayo are not able to find the origin. Any help is appreciated. RR
@rita8898, have you heard of RGCC testing? Do your own research, but from what I understand, it can provide origin along with other helpful information.
My name is Sam. I live in wales in the uk. I was diagnosed with CUP the first week of February. I’m 54 with a 12 year old daughter that I gave birth to at 42. Only 1 and she’s a joy! We are in a rare group and the pathology is crucial although in so many cases they often never find the primary as someone says in a post, our immune system already killed it off but sadly after spreading. I have adonacarsenoma. Forgive poor spelling. It’s in my lymph nodes in pelvis and outer lining of stomach. They are treating me with chemo (4rounds) palliative and attacking it as if it is a gynaecology cancer (which I actually believe it is- was at the dr surgery all the time for over a year with elevated CA125 but they kept missing it and then the rash around torso in September- told was menopause. 😔 which it obviously wasn’t. I have double dose chemo paclitaxol and carboplatin. I’ve only done one round and next Tuesday I’ll go for the second. I’m eating a diet of cancer starving foods and take a lot of supplements plus IV vit C because I have to be able to tell my child that I did everything I could. She knows I have cancer but not how serious it is. As a Christian, I trust the Lord completely and despite the horrific experience of it all, know His blessings in abundance. He knows mine and my family’s future and that keeps me. Thanks for letting me be a part of your group and I’m so sad about the dear lady of 44. Praise God too for the wonder of 6/7 years on for the lady’s husband with CUP. We may be far away physically but we are close in our similar circumstances.
I too have CUP also in my lymph nodes in pelvis. My cell type is squamous though. I have just finished my 4th cycle of chemo paclitaxol and carboplatin along with bevacizumab (avistin). After my 3rd scan I showed NED. I will be on the avistin for a total of 2 years as maintenance to keep everything at bay.
Be hopeful, I was where you were just a few months ago. I pray for you that this regimen works for you as well.
@rita8898, have you heard of RGCC testing? Do your own research, but from what I understand, it can provide origin along with other helpful information.
RGCC was developed by a Swiss company. It doesn't appear to yet be approved by the US Clinical Laboratory Improvement Amendments (CLIA) and The College of American Pathologists (CAP). US labs that provide medical grade testing are CLIA certified and CAP accredited. This ensures test results meet and exceed industry standards for clinical laboratory testing.
RGCC looks promising and is similar to the Galleri test. The Galleri test is a blood test, offering a new way to screen for cancers. Many cancers can start to grow but show no symptoms until later stages. With Galleri pathologists are able to look for a signal shared (tumor DNA in a person’s circulation) for more than 50 types of cancer. If a cancer signal is found, the results predict where in the body the cancer may be located to help your provider guide your next steps. Galleri should be done in addition to, not in place of, any annual cancer screenings recommended by your healthcare provider. This test does not detect all cancers and is not meant to replace genetic testing for those at increased risk of hereditary cancers.
Good morning everyone,
It has been a long time since I have posted on this thread. I had surgery in December and radiation in February and March, and then back to chemo afterward. Astonishingly, I am almost at my two-year cancerversary and am feeling better than I have in years! The reason, I believe, is that the cancer was in me long before diagnosis (main symptom: exhaustion which was blamed on taking care of my sweetheart who was getting sicker and sicker--he is now in a nursing home and is doing well). I am so grateful to be feeling well! Chemo is keeping the growths at bay and I can still work which is a blessing. Cancer is tough but we are tougher.
Sheri
Good morning everyone,
It has been a long time since I have posted on this thread. I had surgery in December and radiation in February and March, and then back to chemo afterward. Astonishingly, I am almost at my two-year cancerversary and am feeling better than I have in years! The reason, I believe, is that the cancer was in me long before diagnosis (main symptom: exhaustion which was blamed on taking care of my sweetheart who was getting sicker and sicker--he is now in a nursing home and is doing well). I am so grateful to be feeling well! Chemo is keeping the growths at bay and I can still work which is a blessing. Cancer is tough but we are tougher.
Sheri
Congratulations, Sheri!! I know you went through heck and back to get to this point. It’s amazing what the body can go through and overcome, isn’t it? I’m so glad you wrote in to share this positive message that cancer is tough, but we ARE tougher!! ☺️
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@janiebill, I can understand your concern about finding the primary. You can have squamous cell carcinoma on any part of your body. Chemo and radiation together is standard treatment for metastatic SCC regardless of where it started.
Are you finished treatment? How are you doing?
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1 ReactionThanks for responding. Yes, I’ve finished radiation and chemo. As of now I’m not having immunotherapy as the last 2 PET scans showed no activity. I did chemo( cisplatin) and radiation at the same time. It really did a number on me so to speak. Unfortunately, I’m dealing with lymphedema in my hand and arm with pain on my chest and right side. Hopefully I’ll get relief soon!
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1 ReactionBut to answer your question…. I feel good!😊
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3 ReactionsMy name is Sam. I live in wales in the uk. I was diagnosed with CUP the first week of February. I’m 54 with a 12 year old daughter that I gave birth to at 42. Only 1 and she’s a joy! We are in a rare group and the pathology is crucial although in so many cases they often never find the primary as someone says in a post, our immune system already killed it off but sadly after spreading. I have adonacarsenoma. Forgive poor spelling. It’s in my lymph nodes in pelvis and outer lining of stomach. They are treating me with chemo (4rounds) palliative and attacking it as if it is a gynaecology cancer (which I actually believe it is- was at the dr surgery all the time for over a year with elevated CA125 but they kept missing it and then the rash around torso in September- told was menopause. 😔 which it obviously wasn’t. I have double dose chemo paclitaxol and carboplatin. I’ve only done one round and next Tuesday I’ll go for the second. I’m eating a diet of cancer starving foods and take a lot of supplements plus IV vit C because I have to be able to tell my child that I did everything I could. She knows I have cancer but not how serious it is. As a Christian, I trust the Lord completely and despite the horrific experience of it all, know His blessings in abundance. He knows mine and my family’s future and that keeps me. Thanks for letting me be a part of your group and I’m so sad about the dear lady of 44. Praise God too for the wonder of 6/7 years on for the lady’s husband with CUP. We may be far away physically but we are close in our similar circumstances.
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4 Reactions@rita8898, have you heard of RGCC testing? Do your own research, but from what I understand, it can provide origin along with other helpful information.
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Hug
1 ReactionI too have CUP also in my lymph nodes in pelvis. My cell type is squamous though. I have just finished my 4th cycle of chemo paclitaxol and carboplatin along with bevacizumab (avistin). After my 3rd scan I showed NED. I will be on the avistin for a total of 2 years as maintenance to keep everything at bay.
Be hopeful, I was where you were just a few months ago. I pray for you that this regimen works for you as well.
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1 ReactionThank you so much. Gods bless you for encouraging me and I pray it goes well with you
RGCC was developed by a Swiss company. It doesn't appear to yet be approved by the US Clinical Laboratory Improvement Amendments (CLIA) and The College of American Pathologists (CAP). US labs that provide medical grade testing are CLIA certified and CAP accredited. This ensures test results meet and exceed industry standards for clinical laboratory testing.
RGCC looks promising and is similar to the Galleri test. The Galleri test is a blood test, offering a new way to screen for cancers. Many cancers can start to grow but show no symptoms until later stages. With Galleri pathologists are able to look for a signal shared (tumor DNA in a person’s circulation) for more than 50 types of cancer. If a cancer signal is found, the results predict where in the body the cancer may be located to help your provider guide your next steps. Galleri should be done in addition to, not in place of, any annual cancer screenings recommended by your healthcare provider. This test does not detect all cancers and is not meant to replace genetic testing for those at increased risk of hereditary cancers.
More information can be found at https://www.galleri.com/
Patients interested in this Galleri test can talk to their primary care provider. This test is available at Mayo Clinic.
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5 ReactionsGood morning everyone,
It has been a long time since I have posted on this thread. I had surgery in December and radiation in February and March, and then back to chemo afterward. Astonishingly, I am almost at my two-year cancerversary and am feeling better than I have in years! The reason, I believe, is that the cancer was in me long before diagnosis (main symptom: exhaustion which was blamed on taking care of my sweetheart who was getting sicker and sicker--he is now in a nursing home and is doing well). I am so grateful to be feeling well! Chemo is keeping the growths at bay and I can still work which is a blessing. Cancer is tough but we are tougher.
Sheri
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Hug
9 ReactionsCongratulations, Sheri!! I know you went through heck and back to get to this point. It’s amazing what the body can go through and overcome, isn’t it? I’m so glad you wrote in to share this positive message that cancer is tough, but we ARE tougher!! ☺️
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3 Reactions