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- This topic has 36 replies, 7 voices, and was last updated 12 years, 10 months ago by
Steve2142.
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- July 28, 2012 at 3:18 pm
Hello –
Hello –
A small lesion with a high mitotic rate was removed from my cheek two weeks ago. The SLNB showed three microscopic deposits in one of two nodes that were removed. I go see the Doctor on Tuesday to discuss a CLND in the neck to remove 50 more lymph nodes. This surgery makes me nervous but I feel relatively calm in general as there is nothing I can do about my cancer or prognosis today…except read, learn, and hear what you have to say. I am in the process of preparing a bunch of questions for the consultation including if this is Stage IIIA or B (due to the mitotic rate). I have a pet scan Friday – I assume this is to determine if it has spread to the brain/liver/lungs/bone thus making a CLND irrelevant.
Please share your recovery story if you had a similar CLND. How long before you went back to work and felt relatively normal physically?
I have also been separated for a little under a year and this adds a little relationship complexity to the situation. Feel free to share on this topic as well.
Thank you!
Steve
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- July 28, 2012 at 4:07 pm
Are you confusing ulceration with mitotic rate? Mitotic rate is used for stage 1.
I do not believe the mitotic rate will have anything to do with diagnosing stage three. (A or B) you will be either 3A or 3B based on the following:
Stage IIIA (T1-T4a N1aM0 or T1-T4aN2aM0)
- T1-T4a: the tumor is not ulcerated and ranges in size from less than 1.0 mm to more than 4.0 mm thick.
- N1a: micrometastasis is diagnosed in 1 nearby lymph node
- N2a: micrometastasis is diagnosed in 2-3 nearby lymph nodes
- M0: the tumor has not spread to sites distant from the primary tumor
Stage IIIB (T1-T4bN1aM0, T1-T4bN2aM0, T1-T4aN1bM0, T1-T4aN2bM0, or T1-T4a/bN2cM0)
- T1-T4a: the tumor is not ulcerated and ranges in size from less than 1.0 mm to more than 4.0 mm thick.
- T1-4b: the tumor is ulcerated and ranges in size from less than 1.0 mm to more than 4.0 mm thick
- N1b: macrometastasis is diagnosed in 1 nearby lymph node
- N2b: macrometastasis is diagnosed in 2-3 nearby lymph nodes
- N2c: presence of in-transit metastases or satellite metastases
- M0: the tumor has not spread to sites distant from the primary tumor
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- July 28, 2012 at 4:07 pm
Are you confusing ulceration with mitotic rate? Mitotic rate is used for stage 1.
I do not believe the mitotic rate will have anything to do with diagnosing stage three. (A or B) you will be either 3A or 3B based on the following:
Stage IIIA (T1-T4a N1aM0 or T1-T4aN2aM0)
- T1-T4a: the tumor is not ulcerated and ranges in size from less than 1.0 mm to more than 4.0 mm thick.
- N1a: micrometastasis is diagnosed in 1 nearby lymph node
- N2a: micrometastasis is diagnosed in 2-3 nearby lymph nodes
- M0: the tumor has not spread to sites distant from the primary tumor
Stage IIIB (T1-T4bN1aM0, T1-T4bN2aM0, T1-T4aN1bM0, T1-T4aN2bM0, or T1-T4a/bN2cM0)
- T1-T4a: the tumor is not ulcerated and ranges in size from less than 1.0 mm to more than 4.0 mm thick.
- T1-4b: the tumor is ulcerated and ranges in size from less than 1.0 mm to more than 4.0 mm thick
- N1b: macrometastasis is diagnosed in 1 nearby lymph node
- N2b: macrometastasis is diagnosed in 2-3 nearby lymph nodes
- N2c: presence of in-transit metastases or satellite metastases
- M0: the tumor has not spread to sites distant from the primary tumor
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- July 28, 2012 at 8:51 pm
Thank you so much for taking the time to spell all of that out. I probably am confused. I have seen the same thing that you have typed but more recently I saw from the American Cancer Society that T1b is ulcerated (which mine is not) AND/OR the mitotic rate is qequal to or greater than 1/mm. I took the AND/OR literally. Will have to ask my Doctor since my mitotic rate was 13. Thanks again…I just joined today and it is a great feeling to hear from others. Steve
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- July 28, 2012 at 8:51 pm
Thank you so much for taking the time to spell all of that out. I probably am confused. I have seen the same thing that you have typed but more recently I saw from the American Cancer Society that T1b is ulcerated (which mine is not) AND/OR the mitotic rate is qequal to or greater than 1/mm. I took the AND/OR literally. Will have to ask my Doctor since my mitotic rate was 13. Thanks again…I just joined today and it is a great feeling to hear from others. Steve
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- July 28, 2012 at 8:51 pm
Thank you so much for taking the time to spell all of that out. I probably am confused. I have seen the same thing that you have typed but more recently I saw from the American Cancer Society that T1b is ulcerated (which mine is not) AND/OR the mitotic rate is qequal to or greater than 1/mm. I took the AND/OR literally. Will have to ask my Doctor since my mitotic rate was 13. Thanks again…I just joined today and it is a great feeling to hear from others. Steve
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- July 29, 2012 at 3:29 am
There have been some recent breakthroughs in treatments. 2 drugs were approved for melanoma last year and there a couple of promising ones in trial now. Any survival stats you will find won't reflect the latest treatments as these new treatments won't be reflected in historical numbers.
Mitotic rate is only used for staging for stage IA vs IB, no other stage. A high mitosis in your case might indicate being more aggressive in treatment, but it doesn't change staging.
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- July 29, 2012 at 3:29 am
There have been some recent breakthroughs in treatments. 2 drugs were approved for melanoma last year and there a couple of promising ones in trial now. Any survival stats you will find won't reflect the latest treatments as these new treatments won't be reflected in historical numbers.
Mitotic rate is only used for staging for stage IA vs IB, no other stage. A high mitosis in your case might indicate being more aggressive in treatment, but it doesn't change staging.
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- July 29, 2012 at 3:29 am
There have been some recent breakthroughs in treatments. 2 drugs were approved for melanoma last year and there a couple of promising ones in trial now. Any survival stats you will find won't reflect the latest treatments as these new treatments won't be reflected in historical numbers.
Mitotic rate is only used for staging for stage IA vs IB, no other stage. A high mitosis in your case might indicate being more aggressive in treatment, but it doesn't change staging.
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- July 28, 2012 at 4:07 pm
Are you confusing ulceration with mitotic rate? Mitotic rate is used for stage 1.
I do not believe the mitotic rate will have anything to do with diagnosing stage three. (A or B) you will be either 3A or 3B based on the following:
Stage IIIA (T1-T4a N1aM0 or T1-T4aN2aM0)
- T1-T4a: the tumor is not ulcerated and ranges in size from less than 1.0 mm to more than 4.0 mm thick.
- N1a: micrometastasis is diagnosed in 1 nearby lymph node
- N2a: micrometastasis is diagnosed in 2-3 nearby lymph nodes
- M0: the tumor has not spread to sites distant from the primary tumor
Stage IIIB (T1-T4bN1aM0, T1-T4bN2aM0, T1-T4aN1bM0, T1-T4aN2bM0, or T1-T4a/bN2cM0)
- T1-T4a: the tumor is not ulcerated and ranges in size from less than 1.0 mm to more than 4.0 mm thick.
- T1-4b: the tumor is ulcerated and ranges in size from less than 1.0 mm to more than 4.0 mm thick
- N1b: macrometastasis is diagnosed in 1 nearby lymph node
- N2b: macrometastasis is diagnosed in 2-3 nearby lymph nodes
- N2c: presence of in-transit metastases or satellite metastases
- M0: the tumor has not spread to sites distant from the primary tumor
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- July 28, 2012 at 4:31 pm
I had a neck dissection in 1997. In my case it was a radical one which included the removal of the left neck muscle and the jogular vein. There are other procedures not as extensive. You should definitely talk to your surgeon about the options. Speaking of surgeons, please be sure that he/she is an experienced head and neck specialist who has done a lot of these surgeries before. The neck is an area with many vital nerves, and cutting into them can leave one with a droopy eye or corner of the mouth. So a great surgeon is most important!
It is a major operation. I spent 5 days in the hospital, and another 2 weeks recovering at home. The neck and shoulder area will feel stiff and numb for some time, and there will be disconcerting "tingling" feelings. In my case, most of the numbness and tingling went away after a few months. But I still have some stiffness and numbness after 15 years because of nerve damage that was beyond the body's capacity to repair.
Best wishes,
Harry
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- July 28, 2012 at 4:31 pm
I had a neck dissection in 1997. In my case it was a radical one which included the removal of the left neck muscle and the jogular vein. There are other procedures not as extensive. You should definitely talk to your surgeon about the options. Speaking of surgeons, please be sure that he/she is an experienced head and neck specialist who has done a lot of these surgeries before. The neck is an area with many vital nerves, and cutting into them can leave one with a droopy eye or corner of the mouth. So a great surgeon is most important!
It is a major operation. I spent 5 days in the hospital, and another 2 weeks recovering at home. The neck and shoulder area will feel stiff and numb for some time, and there will be disconcerting "tingling" feelings. In my case, most of the numbness and tingling went away after a few months. But I still have some stiffness and numbness after 15 years because of nerve damage that was beyond the body's capacity to repair.
Best wishes,
Harry
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- July 28, 2012 at 8:56 pm
Hello Harry –
Thanks a ton for sharing your story. So did you know it would be so radical before the surgery or did the surgeon not know until he was inside? Thanks for the god advice…it would be done at Johns Hopkins but I will be sure I get the best. I will also request exceptionally cute and fun nurses!?!
Best wishes to you as well!
Steve
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- July 28, 2012 at 8:56 pm
Hello Harry –
Thanks a ton for sharing your story. So did you know it would be so radical before the surgery or did the surgeon not know until he was inside? Thanks for the god advice…it would be done at Johns Hopkins but I will be sure I get the best. I will also request exceptionally cute and fun nurses!?!
Best wishes to you as well!
Steve
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- July 29, 2012 at 8:55 am
The surgeon discussed at length exactly what was to be done. Yours should expect the same too. The reason he also took out the left neck muscle in my case was because I had a large bad lymph node (about an inch across) kind of intertwined with the muscle. Sounds like you have only micro disease, so the surgeon will concentrate on removal of the usual node containing basins. Each one of these procedures is different. As Frank stated below, sometimes the patotid gland is removed – it wasn't in my case.
My surgery was also 10+ hours. Pain was a big issue first few days, mostly an extremely sore throat caused by the long period of intubation during the surgery. Once that went away, I was able to get off the opiates within the week.
Good luck with the nurses!
– Harry
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- July 29, 2012 at 8:55 am
The surgeon discussed at length exactly what was to be done. Yours should expect the same too. The reason he also took out the left neck muscle in my case was because I had a large bad lymph node (about an inch across) kind of intertwined with the muscle. Sounds like you have only micro disease, so the surgeon will concentrate on removal of the usual node containing basins. Each one of these procedures is different. As Frank stated below, sometimes the patotid gland is removed – it wasn't in my case.
My surgery was also 10+ hours. Pain was a big issue first few days, mostly an extremely sore throat caused by the long period of intubation during the surgery. Once that went away, I was able to get off the opiates within the week.
Good luck with the nurses!
– Harry
-
- July 29, 2012 at 8:55 am
The surgeon discussed at length exactly what was to be done. Yours should expect the same too. The reason he also took out the left neck muscle in my case was because I had a large bad lymph node (about an inch across) kind of intertwined with the muscle. Sounds like you have only micro disease, so the surgeon will concentrate on removal of the usual node containing basins. Each one of these procedures is different. As Frank stated below, sometimes the patotid gland is removed – it wasn't in my case.
My surgery was also 10+ hours. Pain was a big issue first few days, mostly an extremely sore throat caused by the long period of intubation during the surgery. Once that went away, I was able to get off the opiates within the week.
Good luck with the nurses!
– Harry
-
- July 28, 2012 at 8:56 pm
Hello Harry –
Thanks a ton for sharing your story. So did you know it would be so radical before the surgery or did the surgeon not know until he was inside? Thanks for the god advice…it would be done at Johns Hopkins but I will be sure I get the best. I will also request exceptionally cute and fun nurses!?!
Best wishes to you as well!
Steve
-
- July 28, 2012 at 4:31 pm
I had a neck dissection in 1997. In my case it was a radical one which included the removal of the left neck muscle and the jogular vein. There are other procedures not as extensive. You should definitely talk to your surgeon about the options. Speaking of surgeons, please be sure that he/she is an experienced head and neck specialist who has done a lot of these surgeries before. The neck is an area with many vital nerves, and cutting into them can leave one with a droopy eye or corner of the mouth. So a great surgeon is most important!
It is a major operation. I spent 5 days in the hospital, and another 2 weeks recovering at home. The neck and shoulder area will feel stiff and numb for some time, and there will be disconcerting "tingling" feelings. In my case, most of the numbness and tingling went away after a few months. But I still have some stiffness and numbness after 15 years because of nerve damage that was beyond the body's capacity to repair.
Best wishes,
Harry
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- July 28, 2012 at 7:52 pm
Steve, i had a radical neck dissection in 2009 including removal of my parotid gland and 16 lymph nodes. This can be a delicate operation due to the amount of nerves in the area. I strongly suggest a head and neck surgeon with wide experience.My surgery was scheduled to last about 5 hours including closing up by a plastic surgeon. It wound up taking over 11 hours due to isolating the nerves. I was in the hospital for 2 nights. Since i work from home I was able to return to my business functions the Monday after my surgery, which was on a Wednesday. No major problems with recovery. I was a stage 3C at the time. Also, I was put on oxycodone, which i didn't tolerate welll. Since there wasn't much pain, doc took me off it and wenrt with Tylenol and Motrin. best of luck with your scan
Frankd Brooklyn
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- July 28, 2012 at 7:52 pm
Steve, i had a radical neck dissection in 2009 including removal of my parotid gland and 16 lymph nodes. This can be a delicate operation due to the amount of nerves in the area. I strongly suggest a head and neck surgeon with wide experience.My surgery was scheduled to last about 5 hours including closing up by a plastic surgeon. It wound up taking over 11 hours due to isolating the nerves. I was in the hospital for 2 nights. Since i work from home I was able to return to my business functions the Monday after my surgery, which was on a Wednesday. No major problems with recovery. I was a stage 3C at the time. Also, I was put on oxycodone, which i didn't tolerate welll. Since there wasn't much pain, doc took me off it and wenrt with Tylenol and Motrin. best of luck with your scan
Frankd Brooklyn
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- July 28, 2012 at 7:52 pm
Steve, i had a radical neck dissection in 2009 including removal of my parotid gland and 16 lymph nodes. This can be a delicate operation due to the amount of nerves in the area. I strongly suggest a head and neck surgeon with wide experience.My surgery was scheduled to last about 5 hours including closing up by a plastic surgeon. It wound up taking over 11 hours due to isolating the nerves. I was in the hospital for 2 nights. Since i work from home I was able to return to my business functions the Monday after my surgery, which was on a Wednesday. No major problems with recovery. I was a stage 3C at the time. Also, I was put on oxycodone, which i didn't tolerate welll. Since there wasn't much pain, doc took me off it and wenrt with Tylenol and Motrin. best of luck with your scan
Frankd Brooklyn
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- July 29, 2012 at 8:25 pm
I had 20+ lymph nodes removed from the left side of neck late 2009. I was in the hospital I think 2 or 3 days. I had very little pain but the drains that were in for a few weeks were annoying. I still have numbness & tingling. Sometimes I get an itch but I can't feel the scratching which does no good. Strange sensation. And I still have stiffness compounded by being 67 years old. I wonder if that would be less if I had been more diligent in my physical therapy. Anyway, the new drugs are very exciting and one finally appears to be working for me. Best of luck to you!
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- July 29, 2012 at 8:25 pm
I had 20+ lymph nodes removed from the left side of neck late 2009. I was in the hospital I think 2 or 3 days. I had very little pain but the drains that were in for a few weeks were annoying. I still have numbness & tingling. Sometimes I get an itch but I can't feel the scratching which does no good. Strange sensation. And I still have stiffness compounded by being 67 years old. I wonder if that would be less if I had been more diligent in my physical therapy. Anyway, the new drugs are very exciting and one finally appears to be working for me. Best of luck to you!
-
- July 29, 2012 at 8:25 pm
I had 20+ lymph nodes removed from the left side of neck late 2009. I was in the hospital I think 2 or 3 days. I had very little pain but the drains that were in for a few weeks were annoying. I still have numbness & tingling. Sometimes I get an itch but I can't feel the scratching which does no good. Strange sensation. And I still have stiffness compounded by being 67 years old. I wonder if that would be less if I had been more diligent in my physical therapy. Anyway, the new drugs are very exciting and one finally appears to be working for me. Best of luck to you!
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- July 30, 2012 at 1:39 pm
I had this operation in Feb 2011. My jaw area was tight for a couple weeks where i had a hard time eating sandwhiches. I had 30 lymph nodes removed as well as the parotid gland. my surgeon was a head and neck specialist as well as a plastic surgeon. He did an awesome jobs very little pain didnt need pain meds. The drain was annoying. I had to do stretches to get my left arms range of motion back. There is some numbness on that side of my face which is weird while shaving. I took three days off work and then was off the weekend and returned to work the following monday. My hospital stay was for one or two nights I cant remember.
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- July 30, 2012 at 1:39 pm
I had this operation in Feb 2011. My jaw area was tight for a couple weeks where i had a hard time eating sandwhiches. I had 30 lymph nodes removed as well as the parotid gland. my surgeon was a head and neck specialist as well as a plastic surgeon. He did an awesome jobs very little pain didnt need pain meds. The drain was annoying. I had to do stretches to get my left arms range of motion back. There is some numbness on that side of my face which is weird while shaving. I took three days off work and then was off the weekend and returned to work the following monday. My hospital stay was for one or two nights I cant remember.
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- July 30, 2012 at 1:39 pm
I had this operation in Feb 2011. My jaw area was tight for a couple weeks where i had a hard time eating sandwhiches. I had 30 lymph nodes removed as well as the parotid gland. my surgeon was a head and neck specialist as well as a plastic surgeon. He did an awesome jobs very little pain didnt need pain meds. The drain was annoying. I had to do stretches to get my left arms range of motion back. There is some numbness on that side of my face which is weird while shaving. I took three days off work and then was off the weekend and returned to work the following monday. My hospital stay was for one or two nights I cant remember.
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