Husband diagnosed Nasal Cavity SCC

nikolaf,

Welcome to the H&N forum, I am sorry that you are here.

Just from your words it sounds like you have a current doctor with somewhat good bedside manner and a plan is forming.  That is good.  It is all a bit scary, but what you said sounds safely doable.  For peace of mind you may seek the advice of someone who specializes in this rare cancers and its location.

You both just need to try and stay focused and keep moving forward.  Other H&N members have dealt with cancer in the same location and have had surgery and are doing well.  While this is a trip to test you, you can do fine.

There are things this forum can be helpful with along your journey, just ask.

Matt

nikolaf said:

Thanks so much for the

Thanks so much for the response....  I'm trying to cling to the hope the dr would not say he can get it all out and post-radiation he should fully recover and have good prognosis long term if he didnt really mean that....?

Hi - there is always fear of the unkown, but lett you tell you my story.

Last Novemeber I was diagnosed diagnosed with Nasal Cavity SCC and it was also advanced.  My cancer  spread to one lymph node.  I had surgery on Nov. 28 and a bilaterral neck disection a week later.  The pathology report showed clear margins (the cancer had not spread to surrounding tisssue, sinuses or bone) and of the 98 lymph nodes removed only one  was cancerous and it was totally enscapsulated (limiting the chance of spreading).  The tumor board at the hospital reviewed the case and all concluded the the surgeries were successful and no additonal treatment (radiation or chemo) was required.

9 months later I am still cancer free and generally recoverd.  My surgeon was also confident, so far his treatment appears right.  The treatment plan I had was not only the opinion of the surgeon, but a collection of surgeons, radiologists and specialists at the hospital.  All backed with scans and tests and constant monitoring.

Keep the faith and ask all the questtions you want to make the right decision for your husband.  The cancer is rare and there are not too many of us out there to discuss with.  If i can help with information I will.

Keep the faith and good luck!

nikolaf said:

Thank you so much for sharing

Thank you so much for sharing your story!!! So comforting!!!

 

did you have your nose removed or partially?  Did they do the neck disection as an elective treatment?  As well as the other lymphnodes??

 

how much radiation did you need? Or do you mean you never had any radiation?

Glad to share my experience.

I had a complete rhinectomey (whole nose removed).  Prior to the rhinectomy I had multiple CT scans, multiple MRI's and a PET scan.  I also noticed a lump my neck right before the PET scan.  The PET scan indicated activity in the lymph nodes in my neck prompting the bilateral neck disection. 

To elaborate, the PET scan showed activity (not necessarily meaning cancer, inflamation of lymph nodes has many causes) on both sides of my neck.  This is why the surgeon recommended the bilateral disection removing groups of lymph nodes on boh sides commonly associated with the SCC cancer and location of the tumor.  The surgeon explained this to me, i also researched and it made sense.

I did not have any radiation treatment for a couple of reasons.  The surgeon classified my cancer with the Tx Nx Mx method rather than the traditional staging method.  I was clasified as T2 N1 M0 meaning:

1.  T2 - the tumor was advanced (larger size)

2.  N1 - there was lynph node involvement in one node, on the same side of the neck as the cancer.

3.  M0 - no metastisis to other parts of the body.

In addition, The patholgy report after the surgeries indicated the tumor was well differentiated (meaning the tumor cancer cells and the surrounding tissue cells were very different).  This is a good sign indicating the margins were clear and the tumor may have been completly removed.   The other "good" part of the pathology report was that the cancerous lymph node was totaly encapsulated (meaning the cancer probably has not spread). 

My underrstanding of raditiation treatment in the head and neck (beared out by many memebrs here) is that it has physical concequences and can be dangerous to surrounding tissue, nerves, eyes, teeth...etc.).  In addition, because of the risks the radiation dose (streght) has to controlled and the area can only be treated a limited number of times. Becauuse of all of the above the tumor board recommended no radiaiton so that if the cancer returns, it can be treated with a full dose of raditation at that time.

It all made sense to me, but not without listening, researching and asking questions

I am offeering this informattion to hopefully help you make the best decision for your case and comfort you that there are reasons and variables  for treatment based on tests and the information available.  Every case is different  (the fickle nature of the disease), don't be persuaded by my story, use it to arm yourself with information and ask enough qurstions to you feel comfortable making a choice.

Feel free to ask more qquestions, I am happy to help.  

nikolaf said:

Mac (or is it Rick?!) I do have one question.

Mac I do have one question.  Well two.  

 

1) did you wait for pathology before reconstruction?

 

2) how long did recovery from reconstruction take?  Did you need more than 1 surgery?

 

thanks so much for your help and kindness! 

i am scheduled for a biopsy. Just would like to know if the lesion was large or small or just a rough area. Where did they biopsy? at least they found it and now he is on his journey. He has you by his side. 

nikolaf said:

Thanks so much.... dr

Thanks so much.... dr recommending radiation.  not entirely surprising given the size.  Still waiting on final pathology.   

 

the dr was so hopeful before but today he was being wishy  washy.  Before he said his survival probability was very very good.  Today he wouldn't say that.  I don't know why and we are scared.  I'm trying to remain positive.

 he is getting radiation now.... what if it comes back? I need to look to treatments for reoccurrence to get my head around this.  

 

Hope all is well with you.  

I'm sorry you are going through this.  My experice was similar.  Prior to surgery the surgeon was optimistic for a cure.  Post surgery during my visits the optimiism was not there.  I was scheduled for radiation as well, they wanted to wait until the surgery sites healed.  I had to wait +/- 4 weeks for my appointment to get fitted for the radiation mask.

During that span the pathology report came back, it was reviewed along with my case history by my surgeon, the radiologist, and the hospital tumor board.  The day of the mask fitting I was a wreck.  At the apointment I was told evryhting looked great and they all agreed that radiation was not needded.

Emotions swing, it is normal.  Wait for the final pathology report, I hope it is good news.  I also hope your husbands pain is reduced and he is healing well.

Hang in there!! 

nikolaf said:

How long did you have to wait

How long did you have to wait for pathology?  Ours has been back but they won't say anything.  

I had to wait 4 weeks until after the tumor board met.  I found out the day before my radiologist appointment to get fitted for the mask.  At the radiologist appointment I was told that he board all agreed that radiation was not needed.  I know it is hard to wait, but keep positive thoughts.

I hope the recovery is going well.  Is your husband coping OK?  The reality of the surgery physically is difficult.