You wrote "retroperoneal area". Would you mean retroperitoneal? You are asking about chemotherapy treatment protocol. Do you have access to the pathology report? It is the pathologist (physician) who examines tissue and specimens under the microscope and provides a diagnosis of the kind of cancer. Peritoneal refers to the location (the tissue that is the lining for the wall of the abdomen) but not the type of cancer cells that the pathologist writes about in their report.
It sounds like cancer was found from lymph node biopsy and then in the peritoneal area. The doctors believe that there is a primary cancer somewhere else but they haven't located it. Is that correct? They are treating your wife's cancer as if it is a "secondary cancer" meaning the cancer may have originated somewhere else.
Here is a link that describes cancers related to the peritoneum:
Is your wife interested in getting another opinion? If yes, here is a link to the National Cancer Institute's NCI) Designated Cancer Centers. You might like to look through this page and locate the NCI closest to where you reside. These centers have ongoing research and clinical trials.
Retroperitoneal is different than the peritoneal & perineum. It is the space located behind the peritoneum, which is the membrane that covers the abdominal wall & covers most abdominal organs. Kidneys live in this space, for example. I was a diagnostic medical Sonographer for 30years. Hope that helps.
My wife was diagnosed with carcinoma of unknown primary in March this year. Lymph nodes in retroperoneal area was found to be swollen caused pain. When biopsied, it was diagnosed non small cell carcinoma of unknown primary. Is there anyone with similar case ? and what is the best option to cure this . Chemotherapy was done with platinum based reatment. Any other experience ?
I was diagnosed & treated for a stage IV unknown primary tumor in 3/21, in 2/23 my primary showed up, & I went through the targeted protocol. Scans have shown no evidence of new disease since 4/23. We went to MD Anderson midway through the first treatment. Personally, I had a terrible experience with them, & they had nothing different to offer. The doctor hadn’t even looked at my case (even though they shared the same reporting system as my hospital, & had gotten access to all my files 6 weeks earlier), & wasted the appointment criticizing my doctor for not running tests, he had run. My husband spent the time pulling up reports & showing him the results. At the end of the appointment, he said “well, your resent scan shows that treatment is working, we have nothing more to do at this time, but come here when it returns, because we are much more advanced.” I live in a metropolitan area with 3 large cancer centers. In my opinion (hind site is everything), I would wait to see what the scans show, before getting a second opinion. I am in very good hands with my medical team. If you are not, after the treatment is finished might be the time to change?
I hope this is helpful & not just more confusing. I always hesitate to tell my experience, because they are all unique. Best of luck to you & your wife.❤️
In California i am at the City of Hope in Duarte. I agree with the previous post. Find the local research cancer hospital. Check their websites for who to contact. The internet is a dark place. Reputable. Mayo Clinic will come up in the search engines. MD Anderson and so many more. Keep us posted. I know more people will post after me.
I agree wholeheartedly with @katgob’s last post. Folks at City of Hope who have given excellent care to two people in my circle and MD Anderson, where my family member received wonderful, innovative treatment and care are the type of facility that can get to the bottom of the problem. I have been seen at Mayo for a non-cancer related diagnosis and am impressed by the professionalism and precision with which they uncovered my issue, which has been completely and satisfactorily resolved. Go to the best. You will not be sorry.
Hello,
My husband was just diagnosed with CUP. We are going to Wellstar Augusta University Cancer Center. This all started in January, Firestone the scans, then the painful removal of tonsils ( no cancer found in tonsils. Now the tumor team is suggesting “supramaomohyoid neck dissection for definitive pathology.Will send NavDX”.
We asked for clarification in laymen’s terms and are still waiting.
On a positive note, they say it is not in lymph nodes. We are considering moving to Jacksonville FL. in order to be treated at the Mayo Clinic. This would also put us much closer to children and grandkids in Tampa.
Any input would help.
I wish the the best of what ever you both need.
I was diagnosed in 2017. My tumor was removed from my brain and I followed with radiation. My tissue was sent to 2 different labs for further testing. My markers and family history made me a candidate for Keytruda. This passed year I have had 2 more brain tumors and radiation to those and a lymph node below the esophagus that was radiated. I now have 2 more lymph nodes with cancer. The tissue from those were all unknown primary. We sent off tissue be be analyzed again and also cooked. It took several weeks. Doc called last night test highly lean toward lung carcinoma. Most likely I will do Chemo.
Good luck and prayers.
I wish the the best of what ever you both need.
I was diagnosed in 2017. My tumor was removed from my brain and I followed with radiation. My tissue was sent to 2 different labs for further testing. My markers and family history made me a candidate for Keytruda. This passed year I have had 2 more brain tumors and radiation to those and a lymph node below the esophagus that was radiated. I now have 2 more lymph nodes with cancer. The tissue from those were all unknown primary. We sent off tissue be be analyzed again and also cooked. It took several weeks. Doc called last night test highly lean toward lung carcinoma. Most likely I will do Chemo.
Good luck and prayers.
I have been following your posts on an unknown primary. This sounds like a very confusing and frustrating situation for you. It sounds as if your medical team is getting closer to answer now that they are leaning towards a lung carcinoma.
Will you be having further diagnostic tests of the lung?
Hello,
My husband was just diagnosed with CUP. We are going to Wellstar Augusta University Cancer Center. This all started in January, Firestone the scans, then the painful removal of tonsils ( no cancer found in tonsils. Now the tumor team is suggesting “supramaomohyoid neck dissection for definitive pathology.Will send NavDX”.
We asked for clarification in laymen’s terms and are still waiting.
On a positive note, they say it is not in lymph nodes. We are considering moving to Jacksonville FL. in order to be treated at the Mayo Clinic. This would also put us much closer to children and grandkids in Tampa.
Any input would help.
@maryannecrawford, getting a cancer diagnosis upends one's world. Hearing the diagnosis of cancer of unknown primary (CUP) adds to the anxiety. I hope that you've received a laymen's version of the diagnosis in the meantime.
Have you learned anything further? DId you submit a request for a second opinion at Mayo Clinic? How are YOU doing?
Im not familiar with that particular cancer.
For consideration you might be interested in watching Dr. Thomas Seyfrieds interviews online. He's a professor at Boston College.
His belief is that cancer is metabolic and not necessarily genetic.
A good layman's book is Keto for Cancer By Miriam-Kalamian.
Its an excellent read and a different approach for treatment.
Dr Thomas Seyfried had written the forward to the book.
My sister read Chris Beats Cancer. She was following the food and keto kind of changes. She ended up with her ovarian cancer returning as she did not complete the conventional treatments and went the food and additives path. It is said on this site that everything is based on your own body. I carry a genetic mutation and 2 of my 4 siblings also carry it. Not sure if the other two were tested.
In K-12, i would love to see the students learn about food, additions, vitamins in food and separate. Like taking care of my skin when i was young. I did not. I sunned in California. My skin cancers started when i was 36.
We are all continuing to learn.
@maryannecrawford, getting a cancer diagnosis upends one's world. Hearing the diagnosis of cancer of unknown primary (CUP) adds to the anxiety. I hope that you've received a laymen's version of the diagnosis in the meantime.
Have you learned anything further? DId you submit a request for a second opinion at Mayo Clinic? How are YOU doing?
Hello Colleen, The needle biopsy result was squamous cell carcinoma. They did a tonsillectomy..no cancer. So the doctor submitted Joe’s case to the tumor board at AU. They suggested that Joe. have supraomahyoid neck dissection on April 28. Also a NavDX since they have not determined or detected HPV that was just the doctor’s assumption. So we did a blood draw for that and sent it in..They will take out his submandibular gland where it is located, and surrounding lymph nodes. They will then do staging and be more definitive as to type of cancer.So that is discouraging since the tonsillectomy appears to have been done for no reason. The doctor said in retrospect, he should have brought it to the tumor board sooner and done the NAvDx sooner.
As for second opinion at Mayo, I have been pushing him to at least look at the process and talk with someone so that we have an idea as to how long it takes and what the cost would be. He says let’s get this part over and then look at our options.
We just moved to Augusta from Minnesota 2 years ago. We could move to Jacksonville for care, especially if this is a long term situation. His kids and grown grandchildren live in Tampa so they would be a half day away. For me it’s a no brainer, but I am not the one who has cancer. I can present the information but he has to act on it. In our relationship, I am the fact finder and explainer, but I am not sure how much information I could give to Mayo without his permission.
Thanks for asking how I am doing. I have made some very good friends in the area. I also have a group of 6 friends for 60 years that I lean on . My family in Minnesota very supportive. I don’t do social media. So I’m okay if I stay in my 24 hours. I am determined to at least get him online at Mayo, just don’t know how hard to push.
I think once we have diagnosis from NavDX and results from the neck dissection should we submit that to Maya Clinic.
My question is do we need a referral from our doctor?
How long is the process, and what it cost for second opinion ? Can we do a call one they have all the information?
We have a smallRV and I could pack that up and be down to Jacksonville in a day….
Any advice would be helpful. MAC
Hello Colleen, The needle biopsy result was squamous cell carcinoma. They did a tonsillectomy..no cancer. So the doctor submitted Joe’s case to the tumor board at AU. They suggested that Joe. have supraomahyoid neck dissection on April 28. Also a NavDX since they have not determined or detected HPV that was just the doctor’s assumption. So we did a blood draw for that and sent it in..They will take out his submandibular gland where it is located, and surrounding lymph nodes. They will then do staging and be more definitive as to type of cancer.So that is discouraging since the tonsillectomy appears to have been done for no reason. The doctor said in retrospect, he should have brought it to the tumor board sooner and done the NAvDx sooner.
As for second opinion at Mayo, I have been pushing him to at least look at the process and talk with someone so that we have an idea as to how long it takes and what the cost would be. He says let’s get this part over and then look at our options.
We just moved to Augusta from Minnesota 2 years ago. We could move to Jacksonville for care, especially if this is a long term situation. His kids and grown grandchildren live in Tampa so they would be a half day away. For me it’s a no brainer, but I am not the one who has cancer. I can present the information but he has to act on it. In our relationship, I am the fact finder and explainer, but I am not sure how much information I could give to Mayo without his permission.
Thanks for asking how I am doing. I have made some very good friends in the area. I also have a group of 6 friends for 60 years that I lean on . My family in Minnesota very supportive. I don’t do social media. So I’m okay if I stay in my 24 hours. I am determined to at least get him online at Mayo, just don’t know how hard to push.
I think once we have diagnosis from NavDX and results from the neck dissection should we submit that to Maya Clinic.
My question is do we need a referral from our doctor?
How long is the process, and what it cost for second opinion ? Can we do a call one they have all the information?
We have a smallRV and I could pack that up and be down to Jacksonville in a day….
Any advice would be helpful. MAC
You and your husband certainly have a lot on your plate right now. The decisions on where to go for treatment is one of the most important decisions when dealing with cancer. You are wise to consider a second opinion at Mayo Clinic.
It is not always necessary to have a referral in order to get an appointment at Mayo. Here is a link with information about scheduling an appointment. http://mayocl.in/1mtmR63. When you call, you can get more information about the wait time for an appointment as well as the cost, and other questions that you might have.
Will you post again and let me know how you and your husband are doing?
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Retroperitoneal is different than the peritoneal & perineum. It is the space located behind the peritoneum, which is the membrane that covers the abdominal wall & covers most abdominal organs. Kidneys live in this space, for example. I was a diagnostic medical Sonographer for 30years. Hope that helps.
-
Like -
Helpful -
Hug
1 ReactionI was diagnosed & treated for a stage IV unknown primary tumor in 3/21, in 2/23 my primary showed up, & I went through the targeted protocol. Scans have shown no evidence of new disease since 4/23. We went to MD Anderson midway through the first treatment. Personally, I had a terrible experience with them, & they had nothing different to offer. The doctor hadn’t even looked at my case (even though they shared the same reporting system as my hospital, & had gotten access to all my files 6 weeks earlier), & wasted the appointment criticizing my doctor for not running tests, he had run. My husband spent the time pulling up reports & showing him the results. At the end of the appointment, he said “well, your resent scan shows that treatment is working, we have nothing more to do at this time, but come here when it returns, because we are much more advanced.” I live in a metropolitan area with 3 large cancer centers. In my opinion (hind site is everything), I would wait to see what the scans show, before getting a second opinion. I am in very good hands with my medical team. If you are not, after the treatment is finished might be the time to change?
I hope this is helpful & not just more confusing. I always hesitate to tell my experience, because they are all unique. Best of luck to you & your wife.❤️
I agree wholeheartedly with @katgob’s last post. Folks at City of Hope who have given excellent care to two people in my circle and MD Anderson, where my family member received wonderful, innovative treatment and care are the type of facility that can get to the bottom of the problem. I have been seen at Mayo for a non-cancer related diagnosis and am impressed by the professionalism and precision with which they uncovered my issue, which has been completely and satisfactorily resolved. Go to the best. You will not be sorry.
-
Like -
Helpful -
Hug
1 ReactionHello,
My husband was just diagnosed with CUP. We are going to Wellstar Augusta University Cancer Center. This all started in January, Firestone the scans, then the painful removal of tonsils ( no cancer found in tonsils. Now the tumor team is suggesting “supramaomohyoid neck dissection for definitive pathology.Will send NavDX”.
We asked for clarification in laymen’s terms and are still waiting.
On a positive note, they say it is not in lymph nodes. We are considering moving to Jacksonville FL. in order to be treated at the Mayo Clinic. This would also put us much closer to children and grandkids in Tampa.
Any input would help.
-
Like -
Helpful -
Hug
2 ReactionsI wish the the best of what ever you both need.
I was diagnosed in 2017. My tumor was removed from my brain and I followed with radiation. My tissue was sent to 2 different labs for further testing. My markers and family history made me a candidate for Keytruda. This passed year I have had 2 more brain tumors and radiation to those and a lymph node below the esophagus that was radiated. I now have 2 more lymph nodes with cancer. The tissue from those were all unknown primary. We sent off tissue be be analyzed again and also cooked. It took several weeks. Doc called last night test highly lean toward lung carcinoma. Most likely I will do Chemo.
Good luck and prayers.
-
Like -
Helpful -
Hug
3 ReactionsHello @kr60cup
I have been following your posts on an unknown primary. This sounds like a very confusing and frustrating situation for you. It sounds as if your medical team is getting closer to answer now that they are leaning towards a lung carcinoma.
Will you be having further diagnostic tests of the lung?
@maryannecrawford, getting a cancer diagnosis upends one's world. Hearing the diagnosis of cancer of unknown primary (CUP) adds to the anxiety. I hope that you've received a laymen's version of the diagnosis in the meantime.
Have you learned anything further? DId you submit a request for a second opinion at Mayo Clinic? How are YOU doing?
-
Like -
Helpful -
Hug
1 ReactionMy sister read Chris Beats Cancer. She was following the food and keto kind of changes. She ended up with her ovarian cancer returning as she did not complete the conventional treatments and went the food and additives path. It is said on this site that everything is based on your own body. I carry a genetic mutation and 2 of my 4 siblings also carry it. Not sure if the other two were tested.
In K-12, i would love to see the students learn about food, additions, vitamins in food and separate. Like taking care of my skin when i was young. I did not. I sunned in California. My skin cancers started when i was 36.
We are all continuing to learn.
Hello Colleen, The needle biopsy result was squamous cell carcinoma. They did a tonsillectomy..no cancer. So the doctor submitted Joe’s case to the tumor board at AU. They suggested that Joe. have supraomahyoid neck dissection on April 28. Also a NavDX since they have not determined or detected HPV that was just the doctor’s assumption. So we did a blood draw for that and sent it in..They will take out his submandibular gland where it is located, and surrounding lymph nodes. They will then do staging and be more definitive as to type of cancer.So that is discouraging since the tonsillectomy appears to have been done for no reason. The doctor said in retrospect, he should have brought it to the tumor board sooner and done the NAvDx sooner.
As for second opinion at Mayo, I have been pushing him to at least look at the process and talk with someone so that we have an idea as to how long it takes and what the cost would be. He says let’s get this part over and then look at our options.
We just moved to Augusta from Minnesota 2 years ago. We could move to Jacksonville for care, especially if this is a long term situation. His kids and grown grandchildren live in Tampa so they would be a half day away. For me it’s a no brainer, but I am not the one who has cancer. I can present the information but he has to act on it. In our relationship, I am the fact finder and explainer, but I am not sure how much information I could give to Mayo without his permission.
Thanks for asking how I am doing. I have made some very good friends in the area. I also have a group of 6 friends for 60 years that I lean on . My family in Minnesota very supportive. I don’t do social media. So I’m okay if I stay in my 24 hours. I am determined to at least get him online at Mayo, just don’t know how hard to push.
I think once we have diagnosis from NavDX and results from the neck dissection should we submit that to Maya Clinic.
My question is do we need a referral from our doctor?
How long is the process, and what it cost for second opinion ? Can we do a call one they have all the information?
We have a smallRV and I could pack that up and be down to Jacksonville in a day….
Any advice would be helpful. MAC
-
Like -
Helpful -
Hug
1 ReactionHello @maryannecrawford
You and your husband certainly have a lot on your plate right now. The decisions on where to go for treatment is one of the most important decisions when dealing with cancer. You are wise to consider a second opinion at Mayo Clinic.
It is not always necessary to have a referral in order to get an appointment at Mayo. Here is a link with information about scheduling an appointment. http://mayocl.in/1mtmR63. When you call, you can get more information about the wait time for an appointment as well as the cost, and other questions that you might have.
Will you post again and let me know how you and your husband are doing?
-
Like -
Helpful -
Hug
2 Reactions