Husband diagnosed Nasal Cavity SCC

Sinus2016 said:

For what it's worth

In 2016 I was diagnosed with undifferentiated adeno carcinoma of the ethmoid sinus, IVA, T3, N2, MO, G4. Happy to say that after endoscopic surgury, nearly 8 weeks of radiation with 6 chemo treatments and 1year behind I have a greater appreciation for life.Yes it was traumatic celebrating my 30th anniversary in chemo with my wife, unable to eat and drink because he affects of radiations on my salivary glands, taste buds, etc. But I'm a survivor and I give credit to the support I had from family, friends and church. For those receiving treatment stay strong, be optimistic and enjoy the support of those that are special. The tunnel may seem long but there is light at the other end so and your not alone.

Sinus, Thank so much for the encouraging words!  Congratulations on your cancer free life!  I hope you will keep posting here so we can follow your progress!  Be well!

PACE said:

Good Wishes

I have been wondering how your husband is progressing. Also, how are you?  You are both in my thoughts and prayers. 

PACE,

things have been crazy here preparing for Irma-- my husband works in news so he was very busy.  So busy he missed his appointment to be measured/fitted for the head sheild for radiation.  We are in Tampa and faired well overall.

We were told Friday that while margins were technically clear the surgeon was not able to get a "full margin" at the cribriform plate because there was no more tissue to harvest.  so rather than 1cm he was able to take away mm's.  So he is considering it a close rather than a clear margin, and they treat close margins as positive.  So he will have a low dose of platinum based chemo with radiation for 6 weeks. They believe this approach gives him an 85-90% chance of beating this (According to his radiology doctor). They are being aggressive because they believe if it returns that's where it will return and that would mean we are effectively out of options for him. They feel they only have this one shot.... It was very very emotional and terrifying.  Up until this point we thought if it came back, it would do so locally but could be dealt with.... That's often true but not in the case of the cribriform plate, it seems.  

Right now we are trying to focus on the 85-90% and the fact that margin was technically clear Even if it wasn't as much tissue as the surgeon would have preferred. 

So to sum up, we are terrified....  focusing on trying to be hopeful.

Thanks so much for asking.

DarcyS said:

Misdiagnosis

Hello, I am/was also a caregiver to my husband.  He was not misdagnosed, but it took months, antibiotics,  multiple scopes,  and negative biopsies before receiving a diagnosis.  He had T1N2bM0 ssc of the piriform sinus.  Like your husbund, a rare cancer.  It is not unusual for this process to take a long time with many ups and downs.  I understand your anger, I felt it, too. 

It sounds like you are an advocate for your husband, and that is a huge help.  Keeping track of appointments, medicines and treatments definately takes two!  Just your being there and loving him helps tremendously in my opinion.

As to the  confusion over the T staging of  the tumor, the T score  is based on the size.  So I'm not sure why  you received two different scores.  You can check the American Cancer Society's web page for their size guidelines. But I believe you said earlier it was all removed, so that is excellent news.

I say, "was and had", because in Dec. my husband has his 5 year check up and hopefully his last.  Hang in there, the road can be long and hard but there is hope!

I've tried looking for the one for size and I'm not finding it.  I saw one for paranasal but not nasal cavity/ septal.  we thought the tumor was about 3.7-3.9 according to CT/ PET scans.  But pathology says the tumor was actually only 2.2 x 2.0 x 1.6 cm.  I guess what they thought was tumor on CT/PET was swelling around it?

so happy for you and your husband! 

Again thanks for for the encouragement!! 

Sinus2016 said:

Conflicting dr interpetations/opinions are disturbing

My 1st ENT removed the tumor in my left frontal sinus before telling me to go see an oncologist.  (as you have previously noted sinus cancer is extremely rare) After the fact I realized he was probably more interested in doing the endoscopic surgery. He suggested an oncologist in his health organization so he could remain the primary ENT.  At the time I didn't think he did anything wrong but I told him I was going to transfer to the Huntsman Cancer Hospital which is well known in my area.  Upon meeting with a couple ENT's at the Huntsman they advised me that no margin was removed during the surgery which left me at risk. At the time I didn't understand margin, but once explained I felt betrayed and cheated.  I am glad the Huntsman has a tumor board that reviews each case.  Rather than one individual Dr. The board is made up of multiple ENT, Radiation, Chemo oncologists, etc.  In my case they choose not to perform another surgery right away but rather treat me with radiation.  The radiation Dr became my primary Dr.  Though I still had a chemo & ENT  oncologists, speech therapist etc....hmm That reminds me of the facial mask, fitting to me was not a big deal but that 1st trial run, getting the tatoo's laying there with the machine moving all around while painless how could one not think about the future or lack of.  Well the bottom line is after 39 days of radiation, 6 weekly  treatments of cisplatin I have made my 1st of 5 years.  At some point you & your husband will have to trust the treatmant plan and move forward.  Remember you are not alone, my prayers and hopes are with your success.  And as this discussion board demonstrates there many people more qualified than me on your team!

Sinus-- was your tumor at all near the cribriform? 

Sinus2016 said:

Conflicting dr interpetations/opinions are disturbing

My 1st ENT removed the tumor in my left frontal sinus before telling me to go see an oncologist.  (as you have previously noted sinus cancer is extremely rare) After the fact I realized he was probably more interested in doing the endoscopic surgery. He suggested an oncologist in his health organization so he could remain the primary ENT.  At the time I didn't think he did anything wrong but I told him I was going to transfer to the Huntsman Cancer Hospital which is well known in my area.  Upon meeting with a couple ENT's at the Huntsman they advised me that no margin was removed during the surgery which left me at risk. At the time I didn't understand margin, but once explained I felt betrayed and cheated.  I am glad the Huntsman has a tumor board that reviews each case.  Rather than one individual Dr. The board is made up of multiple ENT, Radiation, Chemo oncologists, etc.  In my case they choose not to perform another surgery right away but rather treat me with radiation.  The radiation Dr became my primary Dr.  Though I still had a chemo & ENT  oncologists, speech therapist etc....hmm That reminds me of the facial mask, fitting to me was not a big deal but that 1st trial run, getting the tatoo's laying there with the machine moving all around while painless how could one not think about the future or lack of.  Well the bottom line is after 39 days of radiation, 6 weekly  treatments of cisplatin I have made my 1st of 5 years.  At some point you & your husband will have to trust the treatmant plan and move forward.  Remember you are not alone, my prayers and hopes are with your success.  And as this discussion board demonstrates there many people more qualified than me on your team!

Wow that's awful! I would

Wow that's awful! I would have been so upset about no margins taken!

We are at Moffitt and so he has a whole team, too, who meet with the tumor board, etc. 

So happy you've been cancer free, too! Thank you for taking the time to be encouraging... 

Sinus2016 said:

Nicolas, wishing you the best.

just wondering how you are doing? I think of you often and hope that you have received the clarification on the tumor size and the direction your heading.  My thoughts and prayers are for you to find peace and confidence in the coarse you choose to take.

thanks so much.

his surgeon said he personally does not think the disease made it through all of the mucosa to the cribriform itself.  I suppose he based that on the PET the day before the surgery which he used to map margins.  He still feels it was close, but says he feels confident -if there are residual cells- the radiation/ chemo will kill it.  We asked about the tumor size and he agreed with path on that but disagrees on calling it a T1 because of the amount of septum and nasal bone destroyed. Nonetheless, he stressed how fortunate my husband was it was still contained in the nasal cavity-- he told us he has patients who have orbit or brain involvement or both.  He feels he still is positioned very well to beat this.  Unlike our Radiation Dr said, he said there are options if tumor shows up at the cribriform-- he said it could be recected. he stressed if he really was worried about the cribriform post-surgery he would have met with us immediately to schedule another surgery.

So, I guess we are feeling a bit better, now....

thanks so much for asking!!!