scc nasal cavity cancer

Montreal67

Hi,

I'm new to this site and I've actually had a lot of difficulty finding other people with this disease.   Last year,  in early spring,  my husband developed a bizarre lump on the side of his nose after months of irritation in his nose.  He put off going to the doctor until I successfully nagged him into it.   At first, it was presumed to be a sinus infection but when the antibiotics did not resolve the problem,  he was referred to an ENT.  The first specialist was uncertain and sent him to a colleague.   The new ENT was fairly certain from the beginning;  his exact words were, "it's definitely a tumor and it doesn't look good ". 

A biopsy, CT scan and MRI later,  the diagnosis was in: squamous cell carcinoma of the nasal cavity.  The good news was that it was contained within the nasal cavity,  no lymph nodes were affected.   My husband it's not a smoker, has never been exposed to any industrial dusts and has no known risk factors apart from being male and in his 50 's.

The treatment seemed simple enough : a fairly avant garde treatment known as Curie therapy.  15 tubes were run through the tumor and through surrounding tissue,  for good measure.   He stayed in the hospital for 5 days where they administered the isotopes into the catheters 3 times a day.   In the 2 months that followed,  it worked like a charm,  until it didn't. 

A new lump formed on the top of his nose.   It was quickly biopsied and found to be malignant.  This combined with persistant head aches lead to a fresh set of scans, but we got lucky again: despite the cancer now being referred to as aggressive since it resisted radiation, the cancer has NOT spread.   On the down side,  his nose will be removed and he may lose his eye. Surgery is next week and we're nervous as hell! 

Has anybody else had this experience or known anybody who has?  Would love to know how this usually plays out. 

Thanks for any info anyone can offer! 

wmc

Welcome to H&N group

Welcome to the group, but sorry you need to be here. It sounds like from the start things could have been done different. This sounds like your husband is being treated local. I will always recomend going to a major teaching hospital or major one that has a tumor board. You still might think about a second opinion even tho he is scheduled for next week. There have been several that had nasal cancer and one lost her eye and the other lost his nose. The first one is no longer with us. I wish I could offer more information to help or at least comfort. Will add you both to my prayer list and hope for the best.

Bill

Kent Cass

Many issues

"Montreal", so are you in Canada, and part of the "socialist/free" medical system? Are you in Montreal?

"Curie therapy," is a new one, and I did a little research and came-up empty on finding it. Radioactive isotopes sounds like the kinda tx done in Prostate C, where radioactive pellets are put in the prostate, and kept there.

Bottom-line, of course, is that your C/ENT Drs failed you= it came back in only 2 months time, so they never got rid of the C. I understand there could be other factors in play, such as this tx was the best option in trying to save the nose, for instance.

Just about all of us get Chemo and Radiation zappings- the chemo delivering a jab that stuns the C into non-replication, and the rads deliver the knockout punch that gets the C carried out of the ring on a stretcher en route to the county morgue. I was Nasopharyngeal almost 7 years ago, but caught earlier than your husband's was, and the Drs unloaded all their ammo on me in treatment with C&R, making it a bloody hell for some 6 weeks, and not as bad for another 3 weeks (too sick for any rads in weeks 5&6), but I'm still good almost 7 years later.

Did your Drs ever mention the isotopes were a better option than radiation beams/zappings from a rad machine?

I agree with Bill- New York City has 3 of the top C Med Centers in the USA. A trip and opinion gotten from Sloan-Kettering, for instance, might be a very good idea, considering the fact we're talking about the removal of his nose. Do get another opinion at a top C Med Center.

So sorry to read of your husband's bad experience in the ring with Ol' C, and do hope and Pray things will all work-out to the better for him, and you. Truly do.

kcass

phrannie51

Hi Montreal....and welcome....

There are a couple people on this board who have lost their noses, but I haven't seen them on here for a long time.

However, there is a Head and Neck Survivor's Group on Facebook with many members.  There are a few active members there who have lost their noses.  If you want to join that, pm me your name on FB, and I will get you in.  It's a secret group, so it can't be found doing a search. 

If it's easier, contact me on FB....my name there is "Jackie Larrick Stevens".....we have to be friends in order to invite to the group.

p

Montreal67

wmc said:

Welcome to H&N group

Welcome to the group, but sorry you need to be here. It sounds like from the start things could have been done different. This sounds like your husband is being treated local. I will always recomend going to a major teaching hospital or major one that has a tumor board. You still might think about a second opinion even tho he is scheduled for next week. There have been several that had nasal cancer and one lost her eye and the other lost his nose. The first one is no longer with us. I wish I could offer more information to help or at least comfort. Will add you both to my prayer list and hope for the best.

Bill

Thanks for your response

Thanks for your response Bill.  

We're in Quebec, Canada so we don't really have a lot of choice where we can go.  Actually, the hospital that's been treating my husband has a relatively new cancer facility with all the newest bells and whistles and his radiation oncologist just attended a medical conference in Philadelphia, so we felt he was in good hands.  In fact, the tumor was shrinking so fast, the doctors were over the moon!  Then the tumor grew back just as fast; its the weirdest thing.  Apparently this is so rare, it doesn't surprise me that the doctors misjudged the efficacy of the treatment; there's just not enough stats to determine probable outcomes. 

Anyway, your prayers are much appreciated. 

Kind Regards

Montreal67

Kent Cass said:

Many issues

"Montreal", so are you in Canada, and part of the "socialist/free" medical system? Are you in Montreal?

"Curie therapy," is a new one, and I did a little research and came-up empty on finding it. Radioactive isotopes sounds like the kinda tx done in Prostate C, where radioactive pellets are put in the prostate, and kept there.

Bottom-line, of course, is that your C/ENT Drs failed you= it came back in only 2 months time, so they never got rid of the C. I understand there could be other factors in play, such as this tx was the best option in trying to save the nose, for instance.

Just about all of us get Chemo and Radiation zappings- the chemo delivering a jab that stuns the C into non-replication, and the rads deliver the knockout punch that gets the C carried out of the ring on a stretcher en route to the county morgue. I was Nasopharyngeal almost 7 years ago, but caught earlier than your husband's was, and the Drs unloaded all their ammo on me in treatment with C&R, making it a bloody hell for some 6 weeks, and not as bad for another 3 weeks (too sick for any rads in weeks 5&6), but I'm still good almost 7 years later.

Did your Drs ever mention the isotopes were a better option than radiation beams/zappings from a rad machine?

I agree with Bill- New York City has 3 of the top C Med Centers in the USA. A trip and opinion gotten from Sloan-Kettering, for instance, might be a very good idea, considering the fact we're talking about the removal of his nose. Do get another opinion at a top C Med Center.

So sorry to read of your husband's bad experience in the ring with Ol' C, and do hope and Pray things will all work-out to the better for him, and you. Truly do.

kcass

Actually, we're just outside

Actually, we're just outside of Montreal and yes it is a socialist health care system, but I stop short of referring to it as "free"; "taxpayer funded" would be more appropriate, especially in light of the amount of taxes we pay here!

Curie therapy is fairly new.  It's used mostly for prostate and breast cancer tumors and it has enjoyed very positive outcomes with minimal damage to the surrounding tissue.  This is why they thought it would work for a nasal tumor: kill the tumor, keep the nose.  The radiation oncologist told us there was an 85% chance that it would kill the tumor, end of story.  Looks like my husband fell in that other 15%, but like I said to Bill, this is such a rare tumor, the stats can easily be skewed one way or another with a single case.  The Ent we're working with now, who is well-known and recognized all over the great Montreal area said that this is the first case he's seen of this in 8 years.  

Now we've also working with another ENT who has a specialization in cancer surgery and he will be performing the surgery.  Its a little tougher to recover from a removed nose once its already been radiated, but my husband is otherwise very healthy.  The only problem is that the surgeon usually takes a 1 cm margin from the tumor, but because of the location and size of the tumor, 1 cm would be the straight in his eye.  He says that the pathologist will be present and he will take smaller margins until he reaches normal cells; hopefully, the cells will be normal before the eye.  

Thanks for your support and prayers.  I'll let you know how things turn out.  

Barbaraek

Montreal- welcome though I am sorry

that you need to be here. It must have been so discouraging to have the tumor return so quickly. Treatment is such a roller coaster ride with so many highs and lows. I hope additional treatment will get rid of the cancer once and forever. You and your husband will be in my prayers. There are several caregivers on this message board - we will all tell you that this is a marathon, so pace yourself and try to take care of yourself too. Get some time to do something you enjoy even if it's just for 15 minutes a day. Try to eat right and get sufficient rest too. This message board is here 24/7, so feel free to post whenever you have a question or need support.

Barbara

Montreal67

Just to follow-up to my first

Just to follow-up to my first post, my husband had his surgery and it went well.  It's been about a week and a half since the surgery and he's in pretty good shape.  We followed up with the surgeon Wed past and he gave us a few more details on what they found: he confirmed that was indeed a very aggressive tumor, sprouting out in many directions.  Despite this, he was able to remove the full tumor in one piece and leave his eye intact.  The actual removal of the tumor took about 20 minutes but the reconstruction took 5+ hours.  While nothing can be done about the nose (prosthetic will be possible in about 2 months), the surgeon was able to reconstruct the eyelid by pulling up the side of his face, effectively giving him something of a facelift.  He did however go away with part of the cheek bone, a part of the bone above the bridge of the nose (toward the forehead) and below the nose, but above the palette.  Basically, he took a 1 cm margin all around, which came out clear.  The pathologist will do a full report on the excised tissue and come back to us in about another week and a half to confirm if they got everything.  If not, my husband will have the choice of more surgery or radiation.  

While I hate to go straight to the worst case scenario, I feel we must consider it as, up until now everything about this tumor has gone from bad to worse.  Does anybody else with this experience have any thoughts on the pros and cons of either choice?

 

 

Montreal67

Barbaraek said:

Montreal- welcome though I am sorry

that you need to be here. It must have been so discouraging to have the tumor return so quickly. Treatment is such a roller coaster ride with so many highs and lows. I hope additional treatment will get rid of the cancer once and forever. You and your husband will be in my prayers. There are several caregivers on this message board - we will all tell you that this is a marathon, so pace yourself and try to take care of yourself too. Get some time to do something you enjoy even if it's just for 15 minutes a day. Try to eat right and get sufficient rest too. This message board is here 24/7, so feel free to post whenever you have a question or need support.

Barbara

Thank you Barbara.  I am

Thank you Barbara.  I am beginning to realize what a roller coaster ride this really is!  

Kind regards

swopoe

Montreal67 said:

Just to follow-up to my first

Just to follow-up to my first post, my husband had his surgery and it went well.  It's been about a week and a half since the surgery and he's in pretty good shape.  We followed up with the surgeon Wed past and he gave us a few more details on what they found: he confirmed that was indeed a very aggressive tumor, sprouting out in many directions.  Despite this, he was able to remove the full tumor in one piece and leave his eye intact.  The actual removal of the tumor took about 20 minutes but the reconstruction took 5+ hours.  While nothing can be done about the nose (prosthetic will be possible in about 2 months), the surgeon was able to reconstruct the eyelid by pulling up the side of his face, effectively giving him something of a facelift.  He did however go away with part of the cheek bone, a part of the bone above the bridge of the nose (toward the forehead) and below the nose, but above the palette.  Basically, he took a 1 cm margin all around, which came out clear.  The pathologist will do a full report on the excised tissue and come back to us in about another week and a half to confirm if they got everything.  If not, my husband will have the choice of more surgery or radiation.  

While I hate to go straight to the worst case scenario, I feel we must consider it as, up until now everything about this tumor has gone from bad to worse.  Does anybody else with this experience have any thoughts on the pros and cons of either choice?

 

 

I am glad the surgery went

I am glad the surgery went well and that your husband still has his eye in tact. My husband did not have the same kind of cancer, his was tongue and the cancer had not spread beyond the tongue. His surgeon got a 2cm margin at the closest point. But, we still did radiation and chemo to be extra safe. Because you just never ever know. And we don't want to be back in this same place again. I can imagine that after all you guys have been through that you probably feel the same way. So wait for the final pathology report from the surgery and get some opinions on how to proceed. But for us, better safe than sorry. Hope your husband continues to heal and that you do as well.

Montreal67

swopoe said:

I am glad the surgery went

I am glad the surgery went well and that your husband still has his eye in tact. My husband did not have the same kind of cancer, his was tongue and the cancer had not spread beyond the tongue. His surgeon got a 2cm margin at the closest point. But, we still did radiation and chemo to be extra safe. Because you just never ever know. And we don't want to be back in this same place again. I can imagine that after all you guys have been through that you probably feel the same way. So wait for the final pathology report from the surgery and get some opinions on how to proceed. But for us, better safe than sorry. Hope your husband continues to heal and that you do as well.

Thank you!  And I hope your

Thank you!  And I hope your husband continues to be well!!!!

wmc

Montreal67 said:

Just to follow-up to my first

Just to follow-up to my first post, my husband had his surgery and it went well.  It's been about a week and a half since the surgery and he's in pretty good shape.  We followed up with the surgeon Wed past and he gave us a few more details on what they found: he confirmed that was indeed a very aggressive tumor, sprouting out in many directions.  Despite this, he was able to remove the full tumor in one piece and leave his eye intact.  The actual removal of the tumor took about 20 minutes but the reconstruction took 5+ hours.  While nothing can be done about the nose (prosthetic will be possible in about 2 months), the surgeon was able to reconstruct the eyelid by pulling up the side of his face, effectively giving him something of a facelift.  He did however go away with part of the cheek bone, a part of the bone above the bridge of the nose (toward the forehead) and below the nose, but above the palette.  Basically, he took a 1 cm margin all around, which came out clear.  The pathologist will do a full report on the excised tissue and come back to us in about another week and a half to confirm if they got everything.  If not, my husband will have the choice of more surgery or radiation.  

While I hate to go straight to the worst case scenario, I feel we must consider it as, up until now everything about this tumor has gone from bad to worse.  Does anybody else with this experience have any thoughts on the pros and cons of either choice?

 

 

Looking better...........

I to like to prepair for the worse, and can never be dissapointed. I would thimk that even if they did get it all they jusy might want eithor or Radiation or chemo just to be sure they got it all.

It would be great if it would not be nessary as he has gone through so much. You do go through a lot when you are fighting for your life. He is to be comended, as he has done so well in his fight, as you are as well. Thoughts and prayers.

Bill

Montreal67

wmc said:

Looking better...........

I to like to prepair for the worse, and can never be dissapointed. I would thimk that even if they did get it all they jusy might want eithor or Radiation or chemo just to be sure they got it all.

It would be great if it would not be nessary as he has gone through so much. You do go through a lot when you are fighting for your life. He is to be comended, as he has done so well in his fight, as you are as well. Thoughts and prayers.

Bill

Thanks Bill; sound advise.

Thanks Bill; sound advise.  

Hope you're doing well.

Montreal67

Follow-up

So, just a follow up.  We got the pathologist report and the margins were mostly clear: the closest was 4 mm on a 1 cm margin, so all in all, a good result.  Turns out there were in fact 2 tumors, not just the original 1, measuring 2.5 x 1.5 cm and 1.5 x 1.1 cm.  Also, with the eroding to the surface, stage 4 cancer was confirmed (IVA -locally advanced tumor).  The tumors were a grade 2, moderately differentiated, and aggressive, and while the tumor was touching the bone, it did not invade it but did invade the septum (no surprise there).  He's healing super-fast but because 4 layers of tissue were pulled up his face, along with the necessary arteries (hence the 6 hour surgery), it may take some time before the surgeon is willing to allow a cast to be taken for a prosthetic, just to make sure it heals properly. 

After 4 weeks of regular weekly visits to the surgeon, we now get a month off before our next visit.  We were informed that the tumor board will advise in time for our next visit as to whether or not radiation is recommended.  The surgeon leans toward not doing so as he feels that the risk is not great enough to warrant the damage caused by external beam radiation, particularly where there's no indication of lymphatic invasion, but we will get the board's advice on our next visit and take it from there.  

 

Has anybody ever heard of a second tumor showing up in the nasal cavity like that?  And in such a short space of time?  Thoughts on radiation…