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.
Hi. Thanks so much for all of the information that you shared. I have a question regarding how you became aware of the condition. Did you have any unexplained swelling in a foot?
I have what appears to be unexplained lymphedema in my foot — which to add to the confusion, came on after a couple of bad orthopaedic injuries. It did not go away. Had a fairly complete medical work up with inconclusive results. Vascular insufficiency was suggested. Results also inconclusive after two tests. One doc said 6 veins not working. Another said no vascular issues but lymphedema, probably from orthopaedic injury to lymph tissues. Earlier this month had another test at a vascular clinic with a lymphedema expert on site. Diagnosis is lymphedema. Learned how to wrap leg overnight. Soon after, had a slight swelling /tenderness of neck lymph node. Also, lots going on in the pelvic area. Saw doc. Had blood work—no results yet. However, my leg is less swollen after wrapping at night but tender to pressure. Not sure this is normal recovery from lymphedema. Sometimes it feels as though there is a rush of fluids in the leg. Very odd. By the way, I have never been diagnosed with cancer nor had any nodes treated, biopsied nor removed. I do have non-symptomatic gallstones.
Do you have any thoughts or suggestions for me based on your recent experience? Any suggestions would be appreciated. Thanks and best of luck in your recovery.
Hi. Thanks so much for all of the information that you shared. I have a question regarding how you became aware of the condition. Did you have any unexplained swelling in a foot?
I have what appears to be unexplained lymphedema in my foot — which to add to the confusion, came on after a couple of bad orthopaedic injuries. It did not go away. Had a fairly complete medical work up with inconclusive results. Vascular insufficiency was suggested. Results also inconclusive after two tests. One doc said 6 veins not working. Another said no vascular issues but lymphedema, probably from orthopaedic injury to lymph tissues. Earlier this month had another test at a vascular clinic with a lymphedema expert on site. Diagnosis is lymphedema. Learned how to wrap leg overnight. Soon after, had a slight swelling /tenderness of neck lymph node. Also, lots going on in the pelvic area. Saw doc. Had blood work—no results yet. However, my leg is less swollen after wrapping at night but tender to pressure. Not sure this is normal recovery from lymphedema. Sometimes it feels as though there is a rush of fluids in the leg. Very odd. By the way, I have never been diagnosed with cancer nor had any nodes treated, biopsied nor removed. I do have non-symptomatic gallstones.
Do you have any thoughts or suggestions for me based on your recent experience? Any suggestions would be appreciated. Thanks and best of luck in your recovery.
hi @gisellef, I didn't have any swelling in my legs or feet, in fact I couldn't tell my lymph nodes in my pelvis were enlarged. this became clear when I had a CT scan. Based on the scan they did a biopsy. By the time I did start treatment, I could feel my lymph nodes and they had grown, but still no other symptoms. There could be so many reason why in your case. unfortunately you need to be you own advocate and keep researching and looking for answers.
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.
My enlarged lymph nodes were in my pelvis. Based on the initial biopsy they did they were able to pinpoint where the cancer were be coming from - cervical, rectal anal or oropharyngeal (back of the throat, base of the tongue and tonsils) cancer. It was squamous cell but also HPV. My Pap smear had been normal or very odd. They I had a scope of my throat and such all biospies were done in cervix and rectum. after all the biopsies the decision was to take out one of the enlarged lymph nodes and send it to a specialized lab with the hope it would define where the cancer was. it came bas as 70% cervical and the decision was made to treat for both cervical and rectal/anal as nobody was comfortable enough to us 70% as the answer.
I too went from doctor to doctor for each biopsy and it did take time. I will say there were very quick in getting me in for appts. in the end they knew the lymph nodes were growing (and so did I as I could feel them in the end) so it was time to treat.
I externally talked with a lot of people like it looks like you are. In fact through one friend my labs were send to him (radiologist) to have another look.
I would assume at this point they have done a biopsy and you should know the cell type. this definitely helps identifying location and type of cancer. Also, we are the only ones that know our bodies. I let them know the lymph nodes were increasing and this helped to get the next scan and to move forward with treatment. (we were able to determine the % of growth thus the pace). Don't be afraid to be you own advocate and to tell you doctor any and every change.
Let me know if I can help with any other questions.
My enlarged lymph nodes were in my pelvis. Based on the initial biopsy they did they were able to pinpoint where the cancer were be coming from - cervical, rectal anal or oropharyngeal (back of the throat, base of the tongue and tonsils) cancer. It was squamous cell but also HPV. My Pap smear had been normal or very odd. They I had a scope of my throat and such all biospies were done in cervix and rectum. after all the biopsies the decision was to take out one of the enlarged lymph nodes and send it to a specialized lab with the hope it would define where the cancer was. it came bas as 70% cervical and the decision was made to treat for both cervical and rectal/anal as nobody was comfortable enough to us 70% as the answer.
I too went from doctor to doctor for each biopsy and it did take time. I will say there were very quick in getting me in for appts. in the end they knew the lymph nodes were growing (and so did I as I could feel them in the end) so it was time to treat.
I externally talked with a lot of people like it looks like you are. In fact through one friend my labs were send to him (radiologist) to have another look.
I would assume at this point they have done a biopsy and you should know the cell type. this definitely helps identifying location and type of cancer. Also, we are the only ones that know our bodies. I let them know the lymph nodes were increasing and this helped to get the next scan and to move forward with treatment. (we were able to determine the % of growth thus the pace). Don't be afraid to be you own advocate and to tell you doctor any and every change.
Let me know if I can help with any other questions.
Sounds like you have found the best treatment plan for your recovery.
How many tests and how long all up do you think it took to find the right outcome?
I still think he needs more tests to hopefully find the primary source. Think next one he needs is a colonoscopy.
He has his second opinion specialist appointment on Friday.
Can you think of any questions that may need to be asked?
How long have you been having treatment for?
Thank you for your help and appreciate all your advice.
Grail's "Galleri MCED" (Multi-cancer Early Detection) panel is a simple blood test you can get drawn for a self-pay of approximately $1000 US. It's not FDA approved for official diagnostic use, but does have their approval as a "Lab Developed Test." You can call Grail, speak with one of their physicians/reps, and likely get the test approved, without waiting for local docs or what your primary oncologist thinks.
They will send you a kit in the mail (US only?) which you can take to a local doctor/lab for the blood draw and return shipping to Grail, with results in about 2 weeks.
Although it completely failed to detect my pancreatic cancer recurrence before other methods (rising CA19-9 and MRI), I am only a sample of one, and they claim some reasonably good statistics for pinpointing the likely origin of cancer cells as well as their presence. Scroll down this link to the section about "88% Cancer Signal Origin Accuracy" at https://www.galleri.com/hcp/galleri-test-performance
Despite its imperfections, if I even suspected a possible cancer, I would consider this test. If I had evidence of cancer with unknown origin, and doctors in "wait-and-see" mode or having other difficulties identifying the origin, I would be first in line to get the test done and hopefully help them along.
With the caveats above, if anyone has a chance to use this test, please post replies in the forums here!
Grail's "Galleri MCED" (Multi-cancer Early Detection) panel is a simple blood test you can get drawn for a self-pay of approximately $1000 US. It's not FDA approved for official diagnostic use, but does have their approval as a "Lab Developed Test." You can call Grail, speak with one of their physicians/reps, and likely get the test approved, without waiting for local docs or what your primary oncologist thinks.
They will send you a kit in the mail (US only?) which you can take to a local doctor/lab for the blood draw and return shipping to Grail, with results in about 2 weeks.
Although it completely failed to detect my pancreatic cancer recurrence before other methods (rising CA19-9 and MRI), I am only a sample of one, and they claim some reasonably good statistics for pinpointing the likely origin of cancer cells as well as their presence. Scroll down this link to the section about "88% Cancer Signal Origin Accuracy" at https://www.galleri.com/hcp/galleri-test-performance
Despite its imperfections, if I even suspected a possible cancer, I would consider this test. If I had evidence of cancer with unknown origin, and doctors in "wait-and-see" mode or having other difficulties identifying the origin, I would be first in line to get the test done and hopefully help them along.
With the caveats above, if anyone has a chance to use this test, please post replies in the forums here!
Are there any cancer fighting foods to possibly help slow the development that any of you recommend to add to his diet that may have helped any of you?
Are there any cancer fighting foods to possibly help slow the development that any of you recommend to add to his diet that may have helped any of you?
Hi:
You could try grating fresh turmeric root into food. It helped a family member with ovarian recurrence for a couple of weeks, enough to get her through the time between diagnosis and treatment.
Sounds like you have found the best treatment plan for your recovery.
How many tests and how long all up do you think it took to find the right outcome?
I still think he needs more tests to hopefully find the primary source. Think next one he needs is a colonoscopy.
He has his second opinion specialist appointment on Friday.
Can you think of any questions that may need to be asked?
How long have you been having treatment for?
Thank you for your help and appreciate all your advice.
I had my scan that detected the enlarged lymph nodes beginning of October 2022. I had over a dozen biopsies, along with many scan and scopes for several months. they didn't start my treatments until January 23, 2023, (almost 4 months). They also surgically removed a lymph node and sent it to a company call Tempus labs with the hope that they would help identify. it came back as 70% cervical. Everyone thought it was strong enough result to just treat for that.
I have finished my treatments and had my first scan with was clear. Do you know what the cell type is. In my case this help them go down paths of where that cell type can only be. Mine again was Squamous and would only be found in throat, cervix and anal/rectal. that provided areas to look and direction. To me that would be the biggest question.
Connect
Connect
Like
Helpful
Hug
Hi. Thanks so much for all of the information that you shared. I have a question regarding how you became aware of the condition. Did you have any unexplained swelling in a foot?
I have what appears to be unexplained lymphedema in my foot — which to add to the confusion, came on after a couple of bad orthopaedic injuries. It did not go away. Had a fairly complete medical work up with inconclusive results. Vascular insufficiency was suggested. Results also inconclusive after two tests. One doc said 6 veins not working. Another said no vascular issues but lymphedema, probably from orthopaedic injury to lymph tissues. Earlier this month had another test at a vascular clinic with a lymphedema expert on site. Diagnosis is lymphedema. Learned how to wrap leg overnight. Soon after, had a slight swelling /tenderness of neck lymph node. Also, lots going on in the pelvic area. Saw doc. Had blood work—no results yet. However, my leg is less swollen after wrapping at night but tender to pressure. Not sure this is normal recovery from lymphedema. Sometimes it feels as though there is a rush of fluids in the leg. Very odd. By the way, I have never been diagnosed with cancer nor had any nodes treated, biopsied nor removed. I do have non-symptomatic gallstones.
Do you have any thoughts or suggestions for me based on your recent experience? Any suggestions would be appreciated. Thanks and best of luck in your recovery.
-
Like -
Helpful -
Hug
2 Reactionshi @gisellef, I didn't have any swelling in my legs or feet, in fact I couldn't tell my lymph nodes in my pelvis were enlarged. this became clear when I had a CT scan. Based on the scan they did a biopsy. By the time I did start treatment, I could feel my lymph nodes and they had grown, but still no other symptoms. There could be so many reason why in your case. unfortunately you need to be you own advocate and keep researching and looking for answers.
-
Like -
Helpful -
Hug
1 ReactionThanks for sharing. Your comments about advocating for oneself is very much on point. I appreciate your quick reply.
-
Like -
Helpful -
Hug
1 ReactionMy enlarged lymph nodes were in my pelvis. Based on the initial biopsy they did they were able to pinpoint where the cancer were be coming from - cervical, rectal anal or oropharyngeal (back of the throat, base of the tongue and tonsils) cancer. It was squamous cell but also HPV. My Pap smear had been normal or very odd. They I had a scope of my throat and such all biospies were done in cervix and rectum. after all the biopsies the decision was to take out one of the enlarged lymph nodes and send it to a specialized lab with the hope it would define where the cancer was. it came bas as 70% cervical and the decision was made to treat for both cervical and rectal/anal as nobody was comfortable enough to us 70% as the answer.
I too went from doctor to doctor for each biopsy and it did take time. I will say there were very quick in getting me in for appts. in the end they knew the lymph nodes were growing (and so did I as I could feel them in the end) so it was time to treat.
I externally talked with a lot of people like it looks like you are. In fact through one friend my labs were send to him (radiologist) to have another look.
I would assume at this point they have done a biopsy and you should know the cell type. this definitely helps identifying location and type of cancer. Also, we are the only ones that know our bodies. I let them know the lymph nodes were increasing and this helped to get the next scan and to move forward with treatment. (we were able to determine the % of growth thus the pace). Don't be afraid to be you own advocate and to tell you doctor any and every change.
Let me know if I can help with any other questions.
-
Like -
Helpful -
Hug
4 ReactionsSounds like you have found the best treatment plan for your recovery.
How many tests and how long all up do you think it took to find the right outcome?
I still think he needs more tests to hopefully find the primary source. Think next one he needs is a colonoscopy.
He has his second opinion specialist appointment on Friday.
Can you think of any questions that may need to be asked?
How long have you been having treatment for?
Thank you for your help and appreciate all your advice.
-
Like -
Helpful -
Hug
1 ReactionGrail's "Galleri MCED" (Multi-cancer Early Detection) panel is a simple blood test you can get drawn for a self-pay of approximately $1000 US. It's not FDA approved for official diagnostic use, but does have their approval as a "Lab Developed Test." You can call Grail, speak with one of their physicians/reps, and likely get the test approved, without waiting for local docs or what your primary oncologist thinks.
They will send you a kit in the mail (US only?) which you can take to a local doctor/lab for the blood draw and return shipping to Grail, with results in about 2 weeks.
Although it completely failed to detect my pancreatic cancer recurrence before other methods (rising CA19-9 and MRI), I am only a sample of one, and they claim some reasonably good statistics for pinpointing the likely origin of cancer cells as well as their presence. Scroll down this link to the section about "88% Cancer Signal Origin Accuracy" at https://www.galleri.com/hcp/galleri-test-performance
There's a little more discussion in this Mayo Connect thread:
https://connect.mayoclinic.org/discussion/galleri-test/
Despite its imperfections, if I even suspected a possible cancer, I would consider this test. If I had evidence of cancer with unknown origin, and doctors in "wait-and-see" mode or having other difficulties identifying the origin, I would be first in line to get the test done and hopefully help them along.
With the caveats above, if anyone has a chance to use this test, please post replies in the forums here!
Thanks and best wishes.
-
Like -
Helpful -
Hug
2 ReactionsInteresting information, @markymarkfl.
-
Like -
Helpful -
Hug
1 ReactionAre there any cancer fighting foods to possibly help slow the development that any of you recommend to add to his diet that may have helped any of you?
Hi:
You could try grating fresh turmeric root into food. It helped a family member with ovarian recurrence for a couple of weeks, enough to get her through the time between diagnosis and treatment.
-
Like -
Helpful -
Hug
1 ReactionI had my scan that detected the enlarged lymph nodes beginning of October 2022. I had over a dozen biopsies, along with many scan and scopes for several months. they didn't start my treatments until January 23, 2023, (almost 4 months). They also surgically removed a lymph node and sent it to a company call Tempus labs with the hope that they would help identify. it came back as 70% cervical. Everyone thought it was strong enough result to just treat for that.
I have finished my treatments and had my first scan with was clear. Do you know what the cell type is. In my case this help them go down paths of where that cell type can only be. Mine again was Squamous and would only be found in throat, cervix and anal/rectal. that provided areas to look and direction. To me that would be the biggest question.
-
Like -
Helpful -
Hug
2 Reactions