My dad was diagnosed with this yesterday. He has enlarged lymph nodes in the neck and chest. He had a biopsy and they can’t work out where the primary cancer came from. He has had cat scans pet scans blood tests etc and they can’t find it. He has been to a specialist and is looking at getting a second opinion. He is 80 but was very fit for his age which hopefully helps him. He currently doesn’t show any symptoms. The only reason he had scans was because he was constipated a month ago and needed anti biotics to fix it. If anyone has any thoughts or questions we need to ask the specialist please let me know. It’s been such a horrible month and a half. I hope everyone else is feeling ok as it’s a tough time for us all.
Thanks for your kind words. Her tumor markers were not all that elevated so they were of no help. She is being seen at the USA Mitchell Cancer Institute out of Mobile, AL. Travel is tiring for her and she would not want to go out of state unless possibly Florida. I really think she has made her peace with this. It's hard to see her not do the things she once did. She gets tired very easily. we are changing her iron vitamins to something stronger in hopes that will help. It is impossible to know what is making her so tired (it's either the anemia or the cancer of a combination of both). Please keep us in your prayers.
Hello @mattydlb and welcome to the Cancer support group on Mayo Connect. I can certainly understand your concern and frustration at the thought of your dad having an unknown primary. That is a difficult situation to learn about.
The good news is that there are no symptoms. If it were my parent, I would definitely look for a second opinion. Are you near a well-known cancer center? A multi-disciplinary health care center, such as a university medical school or a facility like Mayo Clinic would be a good choice for a second opinion.
Mayo Clinic has three campuses in Florida, Arizona and Minnesota. If you would like an in-person or virtual consultation, here is appointment information, http://mayocl.in/1mtmR63.
Will you post again and let me know how you are progressing in getting another opinion?
Hello @mattydlb and welcome to the Cancer support group on Mayo Connect. I can certainly understand your concern and frustration at the thought of your dad having an unknown primary. That is a difficult situation to learn about.
The good news is that there are no symptoms. If it were my parent, I would definitely look for a second opinion. Are you near a well-known cancer center? A multi-disciplinary health care center, such as a university medical school or a facility like Mayo Clinic would be a good choice for a second opinion.
Mayo Clinic has three campuses in Florida, Arizona and Minnesota. If you would like an in-person or virtual consultation, here is appointment information, http://mayocl.in/1mtmR63.
Will you post again and let me know how you are progressing in getting another opinion?
Thank you for your response. I live in Melbourne Australia so unfortunately that doesn’t help me.
Luckily we do have good medical facilities here but at the same time I do feel like every scan every test every appointment just makes it all a slow process.
My dad has seen one specialist and has organised another via a friend who has also been going thru cancer recently which gives him a bit more trust I think.
Do you have any questions or advice you recommend he mentions on his visit?
Thank you and will keep you up to date with progress. It definitely helps me feel a bit better discussing on here.
hi @mattydlb. I sorry your dad is going through this. I too had a similar situation. The cancer was found in my lymph nodes in my pelvis area. Based on the cell type (squamous cell) it pointed them in a couple of directs to look and do biopsies. Unfortunately, after many biopsies it was never found and as they monitored the growth of the lymph nodes they decided to treat based on where they thought it should be. Im in Chicago with Northwestern Med (a teaching hospital). My doctor brought my case to the tumor board for boarder discussions with all the experts. I recently had my first scan after treatment and the lymph nodes appear to be normal and no signs of cancer elsewhere. I hope this helps.
Thank you for your response. I live in Melbourne Australia so unfortunately that doesn’t help me.
Luckily we do have good medical facilities here but at the same time I do feel like every scan every test every appointment just makes it all a slow process.
My dad has seen one specialist and has organised another via a friend who has also been going thru cancer recently which gives him a bit more trust I think.
Do you have any questions or advice you recommend he mentions on his visit?
Thank you and will keep you up to date with progress. It definitely helps me feel a bit better discussing on here.
It looks like @dkoontz has offered you some good information based on his personal experience.
From your post, it appears that your dad will be seeing another doctor. Has this appointment been scheduled? If so, you might take the time to review all of his previous test results (both scans, blood tests and biopsies). If you notice anything outside of the range listed as normal, you might want to discuss this with the new doctor.
Figuring out where an unknown primary is located can be quite a mystery and may take a lot of detective work on the part of you and the medical team who is treating your dad.
Will you let me know if you have any other questions?
hi @mattydlb. I sorry your dad is going through this. I too had a similar situation. The cancer was found in my lymph nodes in my pelvis area. Based on the cell type (squamous cell) it pointed them in a couple of directs to look and do biopsies. Unfortunately, after many biopsies it was never found and as they monitored the growth of the lymph nodes they decided to treat based on where they thought it should be. Im in Chicago with Northwestern Med (a teaching hospital). My doctor brought my case to the tumor board for boarder discussions with all the experts. I recently had my first scan after treatment and the lymph nodes appear to be normal and no signs of cancer elsewhere. I hope this helps.
What treatment did you have? So how are you feeling? Did you have symptoms prior to your diagnose? Always love hearing the positive stories to give us all hope.
It looks like @dkoontz has offered you some good information based on his personal experience.
From your post, it appears that your dad will be seeing another doctor. Has this appointment been scheduled? If so, you might take the time to review all of his previous test results (both scans, blood tests and biopsies). If you notice anything outside of the range listed as normal, you might want to discuss this with the new doctor.
Figuring out where an unknown primary is located can be quite a mystery and may take a lot of detective work on the part of you and the medical team who is treating your dad.
Will you let me know if you have any other questions?
Yes scheduled appointment next week. He will take all the paperwork to the new specialist so hopefully they can disect it from there. He has enlarged lymph node in his neck and chest.
It’s hard because I do too much research on these topics which is scary but luckily my parents stay away from google.
Will keep you updated. If you think of any more questions to ask please let me know.
Yes scheduled appointment next week. He will take all the paperwork to the new specialist so hopefully they can disect it from there. He has enlarged lymph node in his neck and chest.
It’s hard because I do too much research on these topics which is scary but luckily my parents stay away from google.
Will keep you updated. If you think of any more questions to ask please let me know.
I certainly understand the "scary" aspect of researching these types of disorders, @mattydlb! Perhaps @dkoontz can offer you some suggestions in what questions might be helpful at your next appointment.
I look forward to hearing from you again with any questions you might have, and I especially look forward to hearing from you after your dad's appointment next week.
What treatment did you have? So how are you feeling? Did you have symptoms prior to your diagnose? Always love hearing the positive stories to give us all hope.
I completely understand how scary to have this diagnosis going though it myself.
I did 6 rounds of chemo (cisplantin) every Monday and radiation for 6 weeks daily. They did what they called a booster or accelerator radiation the last few. I saw my oncologist every Monday as a check in and they were fantastic to see what I needed for pain relief and such from the radiation and chemo.
I did have weird symptoms that I thought was my sciatic nerve but was running down the front of my leg instead of the back of my leg. just odd but not really uncomfortable. I had an appt with my neurologist already set up as I have transverse mellitus and they have been checking me for MS. She scheduled MRI's but thought I might be wise to also do a urine test incase of a UTI. this showed blood. Next was a bladder scan and a CTA. the CTA scan is what showed the lymph nodes. I am so grateful for this neurologist to thinking about the UTI.
This is my 3rd bout with cancer 2 different breast cancers(had mastectomy) and now a 3rd different in lymph node. I have always been very active and I now continue to be. This didn't happen right away and has taken a few months but I must say I feel great. I am back to exercising, taking classes, and enjoying going out with friends. thanksful for my wonderful doctors and enjoying my life.
Im here for you if you have questions I can help with or for any support.
I completely understand how scary to have this diagnosis going though it myself.
I did 6 rounds of chemo (cisplantin) every Monday and radiation for 6 weeks daily. They did what they called a booster or accelerator radiation the last few. I saw my oncologist every Monday as a check in and they were fantastic to see what I needed for pain relief and such from the radiation and chemo.
I did have weird symptoms that I thought was my sciatic nerve but was running down the front of my leg instead of the back of my leg. just odd but not really uncomfortable. I had an appt with my neurologist already set up as I have transverse mellitus and they have been checking me for MS. She scheduled MRI's but thought I might be wise to also do a urine test incase of a UTI. this showed blood. Next was a bladder scan and a CTA. the CTA scan is what showed the lymph nodes. I am so grateful for this neurologist to thinking about the UTI.
This is my 3rd bout with cancer 2 different breast cancers(had mastectomy) and now a 3rd different in lymph node. I have always been very active and I now continue to be. This didn't happen right away and has taken a few months but I must say I feel great. I am back to exercising, taking classes, and enjoying going out with friends. thanksful for my wonderful doctors and enjoying my life.
Im here for you if you have questions I can help with or for any support.
All the different treatments and the process always sounds so complex.
So you had enlarged lymph nodes where abouts?
Sounds like you found the perfect treatment for your body. Being a fit an active person definitely would have helped your recovery.
My dad is 80 but very active for his age. He dances and plays tennis and never smoked or drunk. He doesn’t really have any symptoms except a bit of a husky voice here and again.
He is seeing private specialist on Friday so hopefully they can give him more attention then we have been getting from the public system. I feel like there are just so many delays and communication between doctors etc aren’t very good.
If you have any questions you think should be ask please let me know as any help is most appreciated.
I’m glad your getting back into your social lifestyle.
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My dad was diagnosed with this yesterday. He has enlarged lymph nodes in the neck and chest. He had a biopsy and they can’t work out where the primary cancer came from. He has had cat scans pet scans blood tests etc and they can’t find it. He has been to a specialist and is looking at getting a second opinion. He is 80 but was very fit for his age which hopefully helps him. He currently doesn’t show any symptoms. The only reason he had scans was because he was constipated a month ago and needed anti biotics to fix it. If anyone has any thoughts or questions we need to ask the specialist please let me know. It’s been such a horrible month and a half. I hope everyone else is feeling ok as it’s a tough time for us all.
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Like -
Helpful -
Hug
1 ReactionHello @mattydlb and welcome to the Cancer support group on Mayo Connect. I can certainly understand your concern and frustration at the thought of your dad having an unknown primary. That is a difficult situation to learn about.
The good news is that there are no symptoms. If it were my parent, I would definitely look for a second opinion. Are you near a well-known cancer center? A multi-disciplinary health care center, such as a university medical school or a facility like Mayo Clinic would be a good choice for a second opinion.
Mayo Clinic has three campuses in Florida, Arizona and Minnesota. If you would like an in-person or virtual consultation, here is appointment information,
http://mayocl.in/1mtmR63.
Will you post again and let me know how you are progressing in getting another opinion?
-
Like -
Helpful -
Hug
1 ReactionThank you for your response. I live in Melbourne Australia so unfortunately that doesn’t help me.
Luckily we do have good medical facilities here but at the same time I do feel like every scan every test every appointment just makes it all a slow process.
My dad has seen one specialist and has organised another via a friend who has also been going thru cancer recently which gives him a bit more trust I think.
Do you have any questions or advice you recommend he mentions on his visit?
Thank you and will keep you up to date with progress. It definitely helps me feel a bit better discussing on here.
-
Like -
Helpful -
Hug
2 Reactionshi @mattydlb. I sorry your dad is going through this. I too had a similar situation. The cancer was found in my lymph nodes in my pelvis area. Based on the cell type (squamous cell) it pointed them in a couple of directs to look and do biopsies. Unfortunately, after many biopsies it was never found and as they monitored the growth of the lymph nodes they decided to treat based on where they thought it should be. Im in Chicago with Northwestern Med (a teaching hospital). My doctor brought my case to the tumor board for boarder discussions with all the experts. I recently had my first scan after treatment and the lymph nodes appear to be normal and no signs of cancer elsewhere. I hope this helps.
-
Like -
Helpful -
Hug
2 ReactionsHello @mattydlb
It looks like @dkoontz has offered you some good information based on his personal experience.
From your post, it appears that your dad will be seeing another doctor. Has this appointment been scheduled? If so, you might take the time to review all of his previous test results (both scans, blood tests and biopsies). If you notice anything outside of the range listed as normal, you might want to discuss this with the new doctor.
Figuring out where an unknown primary is located can be quite a mystery and may take a lot of detective work on the part of you and the medical team who is treating your dad.
Will you let me know if you have any other questions?
-
Like -
Helpful -
Hug
1 ReactionWhat treatment did you have? So how are you feeling? Did you have symptoms prior to your diagnose? Always love hearing the positive stories to give us all hope.
-
Like -
Helpful -
Hug
1 ReactionYes scheduled appointment next week. He will take all the paperwork to the new specialist so hopefully they can disect it from there. He has enlarged lymph node in his neck and chest.
It’s hard because I do too much research on these topics which is scary but luckily my parents stay away from google.
Will keep you updated. If you think of any more questions to ask please let me know.
-
Like -
Helpful -
Hug
2 ReactionsI certainly understand the "scary" aspect of researching these types of disorders, @mattydlb! Perhaps @dkoontz can offer you some suggestions in what questions might be helpful at your next appointment.
I look forward to hearing from you again with any questions you might have, and I especially look forward to hearing from you after your dad's appointment next week.
-
Like -
Helpful -
Hug
1 ReactionI completely understand how scary to have this diagnosis going though it myself.
I did 6 rounds of chemo (cisplantin) every Monday and radiation for 6 weeks daily. They did what they called a booster or accelerator radiation the last few. I saw my oncologist every Monday as a check in and they were fantastic to see what I needed for pain relief and such from the radiation and chemo.
I did have weird symptoms that I thought was my sciatic nerve but was running down the front of my leg instead of the back of my leg. just odd but not really uncomfortable. I had an appt with my neurologist already set up as I have transverse mellitus and they have been checking me for MS. She scheduled MRI's but thought I might be wise to also do a urine test incase of a UTI. this showed blood. Next was a bladder scan and a CTA. the CTA scan is what showed the lymph nodes. I am so grateful for this neurologist to thinking about the UTI.
This is my 3rd bout with cancer 2 different breast cancers(had mastectomy) and now a 3rd different in lymph node. I have always been very active and I now continue to be. This didn't happen right away and has taken a few months but I must say I feel great. I am back to exercising, taking classes, and enjoying going out with friends. thanksful for my wonderful doctors and enjoying my life.
Im here for you if you have questions I can help with or for any support.
-
Like -
Helpful -
Hug
3 ReactionsAll the different treatments and the process always sounds so complex.
So you had enlarged lymph nodes where abouts?
Sounds like you found the perfect treatment for your body. Being a fit an active person definitely would have helped your recovery.
My dad is 80 but very active for his age. He dances and plays tennis and never smoked or drunk. He doesn’t really have any symptoms except a bit of a husky voice here and again.
He is seeing private specialist on Friday so hopefully they can give him more attention then we have been getting from the public system. I feel like there are just so many delays and communication between doctors etc aren’t very good.
If you have any questions you think should be ask please let me know as any help is most appreciated.
I’m glad your getting back into your social lifestyle.
-
Like -
Helpful -
Hug
2 Reactions