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Sinus Cancer

SIRENAF42's picture
SIRENAF42
Posts: 204
Joined: Oct 2008

I am looking for someone... anyone... who has had sinus cancer. I have completed my radiation treatments and am recooping == need someone to talk to about side effects, longterm issues.... etc. My cancer was Esthesionueroblastoma and it was in my Ethmoid sinus and part of my sinus cavit.

train-nut
Posts: 101
Joined: Jun 2008

I had squamous cell carcinoma (SCC) in my piriform sinus (in the throat). Different location than yours but perhaps similar side effects for many of those reading these posts. Please provide more information so that someone can reply. Rich

b4wolfe
Posts: 1
Joined: Oct 2008

My dad has had sinus cancer and he had major surgery but refused radiation treatment and needs someone to talk to. He is logged on as TR2. He had his sinus, ethmoid sinus and jaw removed and is trying to deal with the pain. Did you have surgery?

SIRENAF42's picture
SIRENAF42
Posts: 204
Joined: Oct 2008

I had one tumore removed in Oct 2007 it was benign. In April 2008, I began having severe nosebleeds. I called them Red Rivers. My ENT did another CAT scan and found the tumor had returned, I had to have two procedures done. One procedure was on an incision on the inside of my nose next to my right eye to tie off the veins that were feeding the tumor. Then endoscopic to remove the tumor. While in th4re, I had my Ethmoid sinus removed as it was consumed in the tumor. THe biopsy was benign, I then underwent 6 weeks of radiation.

The side effects are a constant stuffy nose, lack of taste, my saliva is now returning but at night my mouth still dries out like a sponge.

I am not sure how long it will be until I can breathe through my nose and taste again.

bany
Posts: 38
Joined: Jun 2008

hi sirena, i'm glad the tumour came back benign. my sister posted about my dad TR2. he didn't have chemo or radiation, so his saliva and taste wasn't affected. he no longer has a stuffy nose 5 months post op, however he does have alot of pain in his face, the nerves were damaged and his prothsesis is still causing pain.

there are more ppl here that have had radiaiton that may be able to advise you better. good luck, i hope you are feeling better soon.

SIRENAF42's picture
SIRENAF42
Posts: 204
Joined: Oct 2008

That was a typo... my second tumor came back malignant... that is why I had the radiation. I am lucky as it was caught very early in stage 1. I am truly blessed. The side effects get better everyday...

bany
Posts: 38
Joined: Jun 2008

i'm so glad they caught the tumour early and you continue to feel better. good luck.

pambak
Posts: 1
Joined: Jan 2009

My dad survived sinus cancer this past year. He was diagnosed last Jan.(08) with very advanced squamous cell sarcoma in his right maxillary sinus, as well as in a lymph node in the neck.We were guided to Sylvester Cancer Center at the U of Miami. Dr. Donald Weed,ENT, performed surgery Mar. 08 and removed the lymph node, as well as the right upper palate of my dad's mouth. All of the cancer was removed, and he had 8 wks. of radiation. He was fitted with a prosthesis in his mouth following surgery. He lost 9 upper teeth, but the prosthesis stays in place, as there are 3 teeth left. (The prosthesis has teeth that look as good as his ever did). Right now, he is cured. There is hope- my dad feels wonderful. We played tennis this morning, and he will be 80 in August!!

bany
Posts: 38
Joined: Jun 2008

hi pambak, thank you for posting the news about your dad. congratulations, i'm so happy for you. it gives me so much hope. my dad had the same cancer and had surgery in june 08, he's 75. yesterday we just found out that his cancer has returned and he will now undergo 7 weeks of radiation. we are counting on this radiation to kill the cancer and he's determined to beat this.

danestor
Posts: 1
Joined: Oct 2009

My wife just completed her treatment in June, not much taste or smell back yet. Had chemo and radiation only. PET clear

RedE2NJoy's picture
RedE2NJoy
Posts: 20
Joined: Aug 2009

I just finished chemo and radiation in early June for maxillary sinus cancer. Had surgery in March then 35 radiation and 8 chemo treatments (cisplatin). My taste buds just started coming back within the past 30 days and smell is only partially what it was.
First pet scan came back with 'significantly less activity', which I am going to take as a good sign.

In watching postings on this site the past few months, I have seen only one or two other 'sinus cancer' listings. If you are interested in keeping in touch and/or exchanging info, I would be appreciative. It is a rare type of cancer--or so I am told--so any cross reference could be worthwhile.

thouhts and prayers with you both,
John

maria2009
Posts: 10
Joined: Oct 2009

hi

I have been diagnosed with the cancer and have been to 2 hospitals. One advised surgery follow by radiation. The other advised rad/chemo only. I am wondering about these 2 options. Would appreciate if you have any input.

Glad to hear your wife's PET is clear

1sunnyday
Posts: 2
Joined: Nov 2009

My husband was diagnosed Feb 2009 with sinonasal unadifferentiated carcinoma and when tumor was found it was 5x4x3.6cm and originally doctors wanted to do surgery but then decided it was better to do chemo/radiation first to shrink tumor then eventually have surgery. after 6 rounds of chemo and 33 radiation treatments tumor did shrink to less than 1cm. He did have to have surgery to remove remaining tumor, but was not as bad as what was originally planned. So i would suggest to see oncologist and see what is best. in my husbands case it was better to shrink first then surgery.

maria2009
Posts: 10
Joined: Oct 2009

hi 1sunnyday

I appreciated very much your feedback. Finally I chose radiotherapy and chemo instead of surgery. I actually have SCC on the nasal septum. Either option I choose, my doctor said the results differ only slightly. The nose will be flat after whatever treatment I chose. Tough luck, for I am only 45 and very vain. Had I been in my sixties I wouldn't care how I look.

RedE2NJoy's picture
RedE2NJoy
Posts: 20
Joined: Aug 2009

sixties or not....vanity still plays a part in most treatment plans/outcomes. Just try and not let it stand in the way of the best treatment possible.
Your team of Drs (chemo, radiation, surgeon, etc) should be able to advise and direct you as well. By all means, listen carefully to the comments available on this site. There are some very experienced survivors and caregivers blogging and supporting one another.

RedE2NJoy's picture
RedE2NJoy
Posts: 20
Joined: Aug 2009

sixties or not....vanity still plays a part in most treatment plans/outcomes. Just try and not let it stand in the way of the best treatment possible.
Your team of Drs (chemo, radiation, surgeon, etc) should be able to advise and direct you as well. By all means, listen carefully to the comments available on this site. There are some very experienced survivors and caregivers blogging and supporting one another.

kathyandthuy
Posts: 5
Joined: Apr 2011

we found luck with chemo first (an advanced and we were told a newer version of chemowe were at a teaching hospital) followed by surgurery and the then more chemo and radiation at the same time god bless

kathyandthuy
Posts: 5
Joined: Apr 2011

we were told to shrink tumer first then surgergy

kathyandthuy
Posts: 5
Joined: Apr 2011

during radiation my husband changed became angry at first then stopped eatting or drinking I did not know him anymore he almost lost kidneys had to do hidration everyday.............the days i could get him there he became catotonic and wanted to stop treatment doc told him you have done 18 radiation treatmeants but without last 4 or 5 it will come back he did finish but because i forced him horrible time i still feel sick but grateful

kathyandthuy
Posts: 5
Joined: Apr 2011

his was in his nose moved to brain and and right eye they did chemo and radiation they wanted to remove right eye chemo killed all traces in eye he kept eye lost vision though due to radiation so far so good all traces gone

kathyandthuy
Posts: 5
Joined: Apr 2011

i know, very rare and hard to find anyone, just one who has gone through this. but we did go through this and beat this cancer against all odds 5% chance to live, hated them with there 5% chance to live!!!!!!!!why not just say no chance...............whats that!!!!!!! For a year he had nose bleeds, horrible headaches, and got blurred vission and was still told you have you have bad sinus infection a year later by mistake doc says opps found a growth lets biobsy (over the phone) and told him lets go through the eye the eye doctor did not want to do this invasive surgery and told us behind the good doctors back, that he had a good friend who was an ENT and wanted us to walk from that doc (the one who called us on the pnone) he put us in touch with UNM and they saved his life i looked through the internet at that time for just one survivor couldnt find one felt lost I swore to god if he spared my husband we would be that one that gave hope because we had no hope he beat stage 4 semouscell sinus caner that started in in nose moved into his brain and wrapped around his optic nerve yet he lives! He holds his 3 year old baby and lives! This is now year two, trying to get to year 5 side effect awfull too close to brain if you need to talk email gotkathy@msn.com will give you our number and help in any way possible bless you and hang on do not listen to defeat when we finally got a good doc he said i do not look at percents only people i thank god ever day for him and the time he gave us next mri and pet scan comming up in agust please pray for us to continue with cancer free reports

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