Maxillary Sinus Cancer - Advice?

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Maxillary Sinus Cancer - Advice?

by CalGirl on Tue Nov 18, 2008 12:00 AM

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Hi, I'm a 29 year old female who was recently diagnosed with neuroendocrine carcinoma or desmoplastic small cell carcinoma in the maxillary sinus.  A recent PET scan showed something on my lymph nodes, so I'm scheduled for a biopsy this week.

I guess I just wanted to reach out to other cancer patients and survivors.  My Dr. gave me two options for treatment and said that I can get surgery first followed by radiation/chemo.  Or vice versa.

He said that although I'm technically a stage III, I was operable because the cancer is still well contained in my maxillary sinus.  

 So my question is...was anyone else given these options and what did you choose to do?

 I'm terrified of the surgery because it would entail losing a portion of the roof of my mouth and a lot of teeth and bones in my face.  Has anyone else experienced this?  Was plastic surgery able to save the facial deformities?

 If my biopsy on my neck comes back positive he said that I will have to have a neck dissection also.  What does that entail?

 Thanks in advance to anyone who can answer any of my questions!

 

RE: Maxillary Sinus Cancer - Advice?

by PostTime on Wed Nov 19, 2008 12:00 AM

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First, I am
very sorry to hear diagnosis.  It is
still a stock to me everyday almost 9 months after my diagnosis of tear duct /
sinus cancer.  Basically it sucks.  As you can see on this broad, there are many
people who are head and neck cancer survivors so it is a very beatable cancer
but some of the treatments are harsh.

 

I had surgery
first followed by radiation and chemo.  I
could not stand the thought of the cancer inside of me so I was glad to have
the surgery first.  I believe the main
advantage of having radiation and chemo first would be to shrink the tumor
before surgery.  I do not think there is
a no way to avoid surgery with these types of cancers which actually is a good
sign because as you note tumor is well contained.  I think the most important thing is to seek
out a second or even third option at a major cancer center especially if the
doctor leaves the choice of surgery followed by radiation/chemo or vice
versa.  A good Head and Neck surgeon so
at least have a recommendation on which way to go.



As far as the
surgery goes, today you can barely tell that I had surgery.  Good Head and Neck cancer surgeons are
usually also facial plastic surgeons so they take great care in minimizing the
damage to your facial appearance.  I did
not have the neck dissection but it is very common as many people on this broad
have had it done and it involves removing lymph nodes from your neck that may
contain some of the cancer cells.  I
think the key to getting the best result possible again is get a second opinion
at a major cancer center and ask the surgeons how many of this types of
surgeries they do a year.  I had my
surgery done at UCLA so if you are around southern California, I can provide a
referral.



I know that
surgery, radiation and chemo are all very scary topics, but at 29 years old you
have your whole life in front of you and I would recommend being as aggressive as
possible in your treatment.  This is
coming from someone who was 40 when diagnosed. 
There are support groups for young adults with cancer that you can find
locally or on the web.



Hang in
there.

RE: Maxillary Sinus Cancer - Advice?

by capp519 on Wed Nov 19, 2008 12:00 AM

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My husband had tonsil cancer with lymph node involvement.  He had chemo and radiation first.  After treatment his PET scan came back clean, so he did not need the surgery.  He has to get a PET scan every three months for the first year (had two already).  His head and neck surgeon told him that some doctors do the surgery first but he wouldn't even suggest it.  He recommended rad & chemo first, as did a 2nd head and neck surgeon (he went for a second opinion)

His cousin had the same cancer the year before.  His first surgeon wanted him to have surgery then treatment.  The surgery was very radical and they would have had to cut through the jaw.  When he told his cardiologist, he immediately recommended a head & neck surgeon.  This surgeon told him to have chemo & rad first, then surgery.  That is the route he took and thank God he's out of treatment about 1 1/2 years and his scans are clean.

I don't know anything about sinus cancer, but I'm writing this because it is very important to get a second opinion.  I would go to a head and neck surgeon.  It sounds like your doctor is leaving it up to you.  Although, ultimately it is your decision on your treatment, most doctors would tell you what they recommend. 

Take care and God bless you,

Carol

 

RE: Maxillary Sinus Cancer - Advice?

by scootie45 on Thu Nov 20, 2008 12:00 AM

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My husband was diagnosed with sinus nasal undiffertiated carcinoma (SNUC) of the maxillary sinus in January of this year.  He is 51 y/o.  It had not spread and no lymph node involvement.  He had 3 rounds of chemo- 5FU and Cisplatin concurrently and 38 radiation treatments.  He saw a head and neck oncology surgeon in Madison after his chemo and radiation were finished, however his PET scans have been clean so no surgery needed.

My best advice to you would be certainly 2nd opinion if you are not comfortable with your current options.  Secondly if you have chemo/radiation- do consider a feeding tube PEG tube- for many people nutrition certainly becomes a huge issue.

 There are many posting on these boards related to sinus cancer- look under head and neck cancers and oral cancers.  If you type in maxillary sinus cancer or SNUC will will find some good information from patients and families who have been there and made it through.

 Alan is now 7 months out from treatment and while he is dealing with the side effects from the chemo and radiation, he is eating, rode his motorcycle again this summer and has gone back to work.

 Remember- cancer is a word, not a sentence.

Our prayers are with you,

Kathy

RE: Maxillary Sinus Cancer - Advice?

by CalGirl on Thu Nov 20, 2008 12:00 AM

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Hello everyone,

It's me again. Thank you all SOOOOOO much for all your words of encouragement!   I'm on my way out the door, so I will keep this short for now, but I just wanted to say a quick THANK YOU from the bottom of my heart!

I started this week hurt, angry, resentful, and MAD and now through of you I finally have hope.  =)

I'll be back later tonight to ask more questions and bug you all.  Hope you don't mind!!!

 

 

 

 

RE: Maxillary Sinus Cancer - Advice?

by CalGirl on Tue Nov 25, 2008 12:00 AM

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Hello again,

It's me again.  I had a 2nd opinion today and scheduled myself for surgery on next Thursday.  The DRs want to go as agressive as they can on me since I'm still young and (hopefully) will be able to tolerate it.  The biopsy on my lymph nodes are still not back as of today so I don't know if I will need the neck dissection as well.

I considered the options of chemo/rad before surgery, but most of what I read on the internet seems to indicate that neuroendocrine tumors are quite agressive and will react to chemo well at first, but then come back.

I don't want to take that chance.  I'm lucky that I'm operable with negative margins.  The tumor is still well contained in my left sinus, so I'm trying to stay optimistic.  I'm going in for a maxillectomy and they will be taking out a lot of my upper teeth and palate because the cancer has already destroyed my bones.

All I can do right now is to pray to God to have mercy on me and make sure that my lymph nodes come back negative.  This waiting game is what drives me the most crazy.

Wish me luck everyone as I begin to prepare for war.

My DR's want to do chemo/radition following surgery with possible biomedical therapy as well because of the agressiveness of this cancer.

Everything I've read on the internet regarding my cancer doesn't give me much hope as there have only been 61 reported cases of it to date.  Someone wise told me today that 61 cases isn't enough to make an accurate diagnosis.

My DR said the same today and said my prognosis could be 11%-100%.  They just don't know because it's never been seen.  

All I can think about is my 3 year son and wonderful husband and how unfair this is to them.  I'm 29 as is my husband.

Please think of us and root us on.  I hope to be a success story.

RE: Maxillary Sinus Cancer - Advice?

by MarkJP on Sun Nov 30, 2008 12:00 AM

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I am 43 years old and I had an esthesio-neuro-blastoma.  It was in my right sinus cavity.  I had surgery (in Jan) then chemo and radiation (in March and April).  The damger with me was it was close to my brain.

For the surgery, they made an incision across the top of my head, pulled my scalp down exposing my forehead.  Then they cut a hole in my forehead, removed the tumor and my olfactory nerve.  Then they buttoned me back up.  As invasive as that was, once my hair grew back you can't even tell.  I also had a neck dissection for infected lymph nodes.  They also removed a muscle and a salvatory glad.  My neck is a little thinner, but you can hardly tell.  The scar has practically dissappeared.  Six weeks later I was back to work.  I mention all this because maybe it's a route you can go?  My Dr. is at Dana-Farber in Boston.

 The chemo was the worst.  The fatigue is absolutely crippling.  It lasted about 6 weeks.  But once it wore off I felt like a new person.

The important thing is to maintain a positive attitude, which is difficult.  I was lucky that my wife is so strong.

RE: Maxillary Sinus Cancer - Advice?

by OrnellaSole on Thu Jul 16, 2015 09:29 AM

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Hello CalGirl, 

I am diagnosed with neuroendocrine maxillary sinus cancer stage 4 i have been thru chemoradiation and am very close to give up the treatment because of the allergic and severe reaction i just want to know how are you, i really want to hear that you are well and cancer free.

Hoping to hear from you.

RE: Maxillary Sinus Cancer - Advice?

by sjeter55 on Mon Aug 24, 2015 12:33 PM

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My partner was diagnosed with stage iv sino-nasel undifferentiated carcinoma. She had chemo & radiation treatment over 4 months. When they went in to remove any tumor that might have been left there was nothing. We also did complementary supplements and a high nutrient organic diet in addition to oncology massages. She is now 3 years cancer free. It CAN be beat. Hope you can hang in there. Prayers for you.

RE: Maxillary Sinus Cancer - Advice?

by plines on Wed Aug 26, 2015 06:35 PM

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First off, I hope you are being treated by a major University Hospital with a dedicated "head and neck" team.  I researched and found several that truly specialize in head and neck cancers.

As for losing a portion of the roof of your mouth, I have lost it all!  I hope you can find a "dental oncologist" who has vast experience with this process. (dental oncologists are dentists, with prosthetic as well as maxillo/facial training) I was treated by Mark Chambers, DDS @ MDAnderson in Houston and can tell you that none of my friends or family can detect deformity.

At the time of surgery (removal of maxilla/teeth) they placed an appliance (obturator) that remained for 1 week, then replaced that with a removable one with teeth.  This appliance also served as part of the stabelizing of my mouth for radiation therapy.  

Once the radiation/and chemo were complete the appliance needed several adjustments to adapt to the healing changes in my mouth and then after 3 months of healing was completely re-built.  I am now 3 years out and just had my obturator re-built at MDAnderson.  I can only say the most wonderful things about it and them. My smile is 99.9% the same as pre-op.  My speech is normal. I can eat anything. And, since I have no upper teeth to hold the appliance in place, the dental oncologists have created "wings" so that it is held in place by engaging undercuts in my mouth.  

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