Husband diagnosed Nasal Cavity SCC
Comments
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Sinus, Thank so much for theSinus2016 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!
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After our appointment onmacmanrick said:I had to wait 4 weeks until
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.
After our appointment on Friday, he is having a hard time (see replies to sinus and PACE below). Luckily, Hurricane Irma has kept him preoccupied for now. I worry about after..
How are you? When are your next scans??
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PACE,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.0 -
If you have major doubts, asknikolaf said:PACE,
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.If you have major doubts, ask for other opinions, it is your right. If you feel comfortable with your husband's team, trust them. Because of the minor marigin issue they are being cautious. I have heard and read many theories here and in otherr foums about what is the right treatment (radiation/chemo after surgery or not). Most feel hitting with everything available is sound treatment, and many here are proof it works. I know it is hard and feel for you and your husband as you go through this.
Clear margins are good, they would not have told you if they felt otherwise. Your team appears to be honest with you, you can get thorugh this. One day at a time, keep the faith!!
Everyone here has felt the fear and doubt, but we are still here.
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Coping with Irma and Treatment
Did not realize you are located in Tampa. What a relief that you fared well. On top of all you are going through...
I can only imagine your shock upon hearing of technically clear margins that nonetheless require both chemo and rads BUT keep in mind that 85-90% cure rate is so reassuring.You've got the chance to get it all now by treating the margins as positive and that's a good thing... your husband is young and strong but his greatest asset is YOU!! Your love and support is not factored in to any stats but please know that it is invaluable. I know the road ahead will be hard while going through treatment but I will look so forward to hearing the great news of NED.
I will keep you both in my thoughts and prayers.
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PACEPACE said:Coping with Irma and Treatment
Did not realize you are located in Tampa. What a relief that you fared well. On top of all you are going through...
I can only imagine your shock upon hearing of technically clear margins that nonetheless require both chemo and rads BUT keep in mind that 85-90% cure rate is so reassuring.You've got the chance to get it all now by treating the margins as positive and that's a good thing... your husband is young and strong but his greatest asset is YOU!! Your love and support is not factored in to any stats but please know that it is invaluable. I know the road ahead will be hard while going through treatment but I will look so forward to hearing the great news of NED.
I will keep you both in my thoughts and prayers.
THANK you so much. Yes it's been overwhelming to say the least. I broke down in front of my neighbor who came to check on my hurricane preps (he knew my husband was at work).
I'm trying so hard to be an extra good wife and advocate right now. I'm constantly reading peer-reviewed journal articles and looking for anything that can help shine a light on his specific case. Luckily there is no boney invasion at the cribriform.... I just have so much anger over his misdiagnoses -especially- the biopsy in May. I know I can't change it. I'm still so very angry.
Pathology calls the tumor pT1 but the surgeon calls it T4. It is very confusing....
anyway thanks for your encouragement. It means a lot.
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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!
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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!
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I've tried looking for theDarcyS 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!!
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I think my only big doubtsmacmanrick said:If you have major doubts, ask
If you have major doubts, ask for other opinions, it is your right. If you feel comfortable with your husband's team, trust them. Because of the minor marigin issue they are being cautious. I have heard and read many theories here and in otherr foums about what is the right treatment (radiation/chemo after surgery or not). Most feel hitting with everything available is sound treatment, and many here are proof it works. I know it is hard and feel for you and your husband as you go through this.
Clear margins are good, they would not have told you if they felt otherwise. Your team appears to be honest with you, you can get thorugh this. One day at a time, keep the faith!!
Everyone here has felt the fear and doubt, but we are still here.
I think my only big doubts right now are: the pathologist calls the tumor pT1 but surgeon calls it a T4? These are very different things. We have an appt Tuesday... I'm scared to ask...
also if tumor was along the cribriform, why was it (the cribriform) not recected?
Trying to put one foot in front of the other.....
thank you for your kindness. It means a ton to me/ us.
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Sinus-- was your tumor at allSinus2016 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?
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Location of tumor
The tumor had grown-in the left sinus near the eyebrow. It had not metastisized into the eye or brain. The doctor believe it started in the left ethmoid and grew into the left sinus. Truthfully there wasn't much margin that could have been taken. I received 70gy of radiation; I was told it was the maximum. All the lymph nodes in my neck had metastized. More severely on the left side which was swollen. Don't remenber how long it took for the lymph nodes to start shrinking from the radiation treatment.
There were a lot of side effects and still having new things appear but nothing that can't be handled. However during and just after treatment I had radiation burns on the roof of my mouth. Sore gums and teeth, loss of saliva, thrush multiple times, tongue very sensitive. (Tongue looked horrible) Dentist perscribed floride but for a long time it and regular toothpaste burned my mouth. I used salt water to rinse my mouth and actually carried a small bottle with me; to rinse out the mucus especially before laying down for radiation treatment. Very uncomfortable if I had to cough with my head strapped on the table and mouthguard. I used a sinus wash to help breathing through my nose (still do) as the mucus doesn't flow properly. I also used biotin mouth wash when I could and an extra soft tooth brush. Very difficult to eat toward the end, water tasted extremely metallic it made me gag.. That's why I was glad to get a peg before treatment, it helped me stay hydrated which is very important during chemo. I only lost 12 lbs during treatment.
There were days I didn't want to go to the hospital (5 days/week, 39 times) Days I didn't want to eat or drink and that is were having support really makes the difference. Make sure you husband has support and you have back up if you can. Be strong and persistent. Go for the cure and remember there is light at the end of the tunnel.
Sorry I cant be more helpful regarding the cribreform.
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Wow that's awful!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!
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...
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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.
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SinusSinus2016 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!!!
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Surgeon said...
Great news that the surgeon does not think the cribriform was involved. He seems quite certain that is the case. And that any possible (but hopefully no) stray cells will be managed by treatment. I am very relieved to hear this. I hope you are too and that some of your worries are lessened. I hope your husband is doing well.
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