Surgery looking for the primary.

On Apr 29, 2012 1:44 PM wyckfordpond wrote:

It has been 24 days now when my phone recorder has the message “I don't like to do it this way but the lymph node in your neck tested positive for cancer.” It took me three months of requesting they check for that to get to that place. So I go in on Tuesday for surgery to take my tonsil and do biopsies from different places with the hope they can find primary. At one point I thought that I might have given this to my wife when she had a little lump in her mouth. After reading more about HPV I now hope that’s what this is. Thank God my wife is fine. I am 56 and just ran a 5k run yesterday with 10 min miles. I have become a nutrition health nut and drink this cancer cure tea hoping it might help. Not sure why they are not going to take out the lymph node that was on the right side of my neck just under the back of my jaw?

 I forgot to ask the doctor this. I have a lot of hope after joining a support group and reading so many positive messages on the board. This might seem a little pretentious but this is my blog. wyckfordpond.blogspot.com "" target="_blank" rel="nofollow">http://wyckfordpond.blogspot.com " target="_blank" rel="nofollow">wyckfordpond.blogspot.com Hope it helps someone like me. Just starting this journey with a lot of you. I hope they find my primary. Has anyone ever had that happen? Gone from an occult to a known primary after surgery?

It will be a week ago tomorrow that I wrote this. The pain is no walk in the park. I just got the biopsy results back from the nurse. They found no cancer in any of the biopsy. When they did another fine needle on my lymph node it collaped and is now gone. At this point I am cautiously optimistic and have an appontment on Friday to talk with the doctor. I am not sure I want to have chemo and radiation based on the current evidence. Has this ever happen to anyone?

Might it have been a false posative from the start?

I am Positive I can't spell!

I am a bit confused.  Are you saying there was never any cancer?  Or was the tonsil that was removed cancerous?  If it was, why was it not considered to be the primary site, with the now-defunct lymph node a metastasis?

I had no tonsils, and none of my PET scans have ever shown a primary.  The only cancer was in one lymph node, a squamous cell carcinoma metastasis, which was removed with all its fellows on the left side surgically.  I nonetheless had radiation to my entire neck, but no chemo, which was considered the standard of care for my situation.  If there was indeed a primary still there, the radiation took care of it.

I was given a 85% chance of cancer recurring without treatment, 85% chance of cure with it.

It will be interesting to hear what your doctor (ENT?) has to say on Friday;  be sure to update us.

Best of luck to you.

Susan

On May 08, 2012 6:53 AM Sdurnell wrote:

I am a bit confused.  Are you saying there was never any cancer?  Or was the tonsil that was removed cancerous?  If it was, why was it not considered to be the primary site, with the now-defunct lymph node a metastasis?

I had no tonsils, and none of my PET scans have ever shown a primary.  The only cancer was in one lymph node, a squamous cell carcinoma metastasis, which was removed with all its fellows on the left side surgically.  I nonetheless had radiation to my entire neck, but no chemo, which was considered the standard of care for my situation.  If there was indeed a primary still there, the radiation took care of it.

I was given a 85% chance of cancer recurring without treatment, 85% chance of cure with it.

It will be interesting to hear what your doctor (ENT?) has to say on Friday;  be sure to update us.

Best of luck to you.

Susan

I am confused too. They did the surgery looking for the primary. Not only did they not find the primary but the lymph node that had no sign of cancer is now basiclly undetectable to the touch. It makes me wonder if I had a false positive form the begining. Do I risk my life at 85% return rate as you say. At what point do you trust the doctors. I asked them if they thought another fine needle biopsy on the lymph node might be a good idea before having a tonsillectomy and they convinced me that it will be done along with the surgery.

I found this study>Ear Nose Throat J. 1992 Sep;71(9):417-21.

I have been living in Limbo Land. This blog is the story of my journey over the last few weeks. Have a great Mothers day and we will too.

Life is an adventure. LIVE IT!

http://wyckfordpond1.blogspot.com/

Read your blog and agree that this is weird!  I hope that the report that you don't have cancer is correct.

It's true that recovering from radiation to the throat is very tough, but a lot of us have done it, and can tell you it's usually quite successful and worth it.

But I sincerely hope you never have to find out!

Best of luck to you!

Susan

I finally got the report from KU. I think I just got the best news of my life. They said not enough evidence to say that I ever had cancer. So now I take all my records and go to Mayo Clinic. I would like to thank every person that has gone through this and to all of you that have help me with advice. Soon I hope soon to have and end to this story. It will be my final analysis. http://wyckfordpond1.blogspot.com

Thank you so much Susan & Rose too.

Wow--your news could not be better!  Congratulations!

I hope everything is just fine at Mayo.  Keep us updated.

Susan

On May 01, 2012 3:43 AM Sdurnell wrote:

Hi Wyckford, and welcome.

I am wondering why they are taking out your tonsil if it does not contain the primary.  From what I've read here that's usually the reason they are removed. 

It also seems not uncommon to leave in an affected lymph node. Radiation and chemo can apparently destroy all the cancerous cells, or alternately the node can be removed by neck dissection after those treatments.  Don't hesitate to question your doctor(s) about it.

In my case, I had one enlarged lymph node biopsied, and it was positive (but negative for HPV).  A PET scan failed to find a primary.  My ENT/neck surgeon removed that node and all the others on that side;  the big one was the only cancerous one and its margins were clean (the cancer was encapsulated within).  I was treated with radiation only, to my whole neck.  I am now 14 months out of treatment, and on Friday met with both my RO and my ENT, who say I look good inside and out--no sign of the cancer.

Never finding a primary is not really common, but not unheard of either.  My doctors say that either my immune system may have taken care of it, or it was so small it was not detectable.  Either way, the radiation would have dealt with anything remaining after my surgery.

Best of luck to you in your treatment.

Susan

Im going through exactly the same (not finding primary). Surgeon suggested Immune system might have gotten it. Same as you pet scan is all clear except the affected lymphs, had them out April 16, 44 removed only 2 cancerous. Am now doing radiation and once a week chemo.

Feel good, lucky to have a friend who went through same thing 3 years ago, he is fine btw. But have a very good understanding of the treatment ahead.

Luckily I was eating full meals a few hours after surgery, so am hopeful I can eat well into the treatment.

Thanks for your message, always good to hear good news

I just sent all my records to mayo clinic and have a new doc. Hope they will have the answer as to what to do next. I don't trust my old doc. I am glad you are doing good and hope if you need a feeding tube you don't wait. I was at a cancer group at the YMCA today with people in all stages of recovery and treatment. It's a 12 week program that I hope to compleat so that we can all help one another. Good luck keep us in the loop on how you do.

Thanks,

Mike