Roller Coaster and Questions
My original biopsy was done Dec. 5, 2010 and the pathologic diagnosis was SCC (A typical squamous) and further testing should be done. I requested a 2nd opinion and had a 2nd biopsy done on Dec 28, 2010 and the pathologic diagnosis was Epitheleal Neoplasm (benign squamous cells) and the recommendation was excision or removal. Got this info Jan 1. We were so hopeful. Both Drs were optimistic by this report and were hoping the tumor would be benign.
I had surgery yesterday morning Jan 3, 2011 and when the tumor was tested during surgery it was positive for squamous cells. The surgeon asked my wife for permission to take the tonsils while I was under and she agreed. The surgeon told my wife the tumor came out very clean and he was hopeful it would be benign but that was not the case. He will test the tonsils and we should know something in a week. The news was devastating as we had a few days where we were actually hoping this was all a mistake and it was not cancer after all.
Is this common to have 2 different path report diagnosis? The same Dr. did both tests?? I can see that most of you have had the neck surgery post rad and or chemo. Is there any risk in doing it the opposite? Should I be asking these questions? I don't want to constantly be 2nd guessing the Drs. Is any info absolute or is this normal? I do want the Drs to be through.
The surgeon added if it turns out the tonsil is the primary location than I would get radiation only. If it is already in a lymph gland can I assume it has traveled? Would I not need to have chemo than? I have such a weak understanding of all of this and feel so ignorant at times. I see many of you have had both rad and chemo. Is this an option? Am I jumping the gun and should I just let this play out?
I am trying to research as much as I can but it seems every situation is slightly different than mine or at least what I think I know about mine.
I know this is just the beginning and my wife and I are still trying to figure out what this all means. I hope I don't sound like I am complaining. I truly appreciate all of your support and any input or advice you have for us.
Ron and Robyn
Comments
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okay, I had cancer on myZooDavid said:nead and neck
Hey Ron, I have been through it for 3 years now.If you are on-line now I can help with some important ?'s that you need to know about.I will message you again in a bit.
sorry,
david
okay, I had cancer on my tonsil and a lum in my neck.The treatment was radiation first, for me, then the docs thought that should do it.Well, the lump was still there and they kept looking and putting it off, though I knew there was still a problem, until thay found it to be growing so surgery was next.That was one year ago.The side effects of radiation are huge.0 -
wow....
I am sad that your new year has had such a rough start. And yes, it seems that all of our experiences are different in one way or another.
In May 2010, I had my lump removed from my neck first. The ENT and I thought it was an encapsulated scar tissue from and old injury. Not so. It was diagnosed SCC...primary was found two weeks later in leftover tonsil tissue. Tonsils had been removed as a child. I was told radiation only....35 rads that ended Sept 3, 2010. I didn't notice any "issues" by having the surgery first and my Onc. didn't advise me of any ill effects of having surgery first and treatment later. Even though in my case, there wasn't a choice. Please ask everyone all the questions you can think of!!! Doctors and nurses alike! Any and all information is a good thing.Good luck and my prayers are with you.
And,NO, you are not complaining! You are informing and arming your self for battle! I am proud of you. Hugs,HR0 -
after thoughtharper rose said:wow....
I am sad that your new year has had such a rough start. And yes, it seems that all of our experiences are different in one way or another.
In May 2010, I had my lump removed from my neck first. The ENT and I thought it was an encapsulated scar tissue from and old injury. Not so. It was diagnosed SCC...primary was found two weeks later in leftover tonsil tissue. Tonsils had been removed as a child. I was told radiation only....35 rads that ended Sept 3, 2010. I didn't notice any "issues" by having the surgery first and my Onc. didn't advise me of any ill effects of having surgery first and treatment later. Even though in my case, there wasn't a choice. Please ask everyone all the questions you can think of!!! Doctors and nurses alike! Any and all information is a good thing.Good luck and my prayers are with you.
And,NO, you are not complaining! You are informing and arming your self for battle! I am proud of you. Hugs,HR
Just a quick side bar...Radiation was "zero" fun. The after effects arn't a bundle of either. But everyone has different reactions. I am one of the lucky ones. After reading on here I know how very blessed I am... No thrush, moderate pain, didn't use the feeding tube, throat blisters but no sores,..... I am not bragging, just letting you know there is always the possibility that your reactions won't be as severe as some that you read about on this forum. Hugs,HR0 -
Questions
Hi Ron,
I don't think it really matters so much the order of treatment. When I had mine, my ENT whom is the best, said it really depends on what seems to be working the best currently. When I had mine I had nine weeks (three week cycles) of Cisplatin, taxotere and 5FU (in the pump). That was followed with seven weeks of concurrent (weekly Carboplatin and daily radiation (35 days)). I could have just as easily gone the concurrent first then strictly chemo latter.
On mine the tonsils were the primary, and the single node tumor was the secondary. Either having the second location o nthe same side or the size of the tumor classified it as STG III SCC (also later determined HPV+). If it would have been more nodes (I believe) or for sure traveled also to the other side, it would have been classified as STG IV.
It is very common in this type of cancer to have a primary and a secondary. Unfortunately some never know for sure where they primary is.
I also had the tonsils removed, no additional surgery, and after the third cycle, the tumor had dissolved and remains gone.
I might quaestion if they have found a tumor, and if the tonsils were infected also, why they aren't opting for both radiation and chemo though.
Even though as mentioned side effects of radiation comes with long lasting effects, it's better than the alternative.
You appear to be young, 49 perhaps from your screen name. I'm 56, and in good health going in. My MD's felt that they would hit me with everything I could handle and go for the total kill. They fet I was young and healthy enough to take it, and hopefully kill it for good leaving me with as many years as possible.
As for the radiation, I'm similar to above. No PEG, minimal sides other than no solid food for about seven weeks. I lost most taste and saliva for about a month or so, but now after 18+ months, I have regained about 90 - 95% of both back.
Best,
John0 -
welcome to the board RonSkiffin16 said:Questions
Hi Ron,
I don't think it really matters so much the order of treatment. When I had mine, my ENT whom is the best, said it really depends on what seems to be working the best currently. When I had mine I had nine weeks (three week cycles) of Cisplatin, taxotere and 5FU (in the pump). That was followed with seven weeks of concurrent (weekly Carboplatin and daily radiation (35 days)). I could have just as easily gone the concurrent first then strictly chemo latter.
On mine the tonsils were the primary, and the single node tumor was the secondary. Either having the second location o nthe same side or the size of the tumor classified it as STG III SCC (also later determined HPV+). If it would have been more nodes (I believe) or for sure traveled also to the other side, it would have been classified as STG IV.
It is very common in this type of cancer to have a primary and a secondary. Unfortunately some never know for sure where they primary is.
I also had the tonsils removed, no additional surgery, and after the third cycle, the tumor had dissolved and remains gone.
I might quaestion if they have found a tumor, and if the tonsils were infected also, why they aren't opting for both radiation and chemo though.
Even though as mentioned side effects of radiation comes with long lasting effects, it's better than the alternative.
You appear to be young, 49 perhaps from your screen name. I'm 56, and in good health going in. My MD's felt that they would hit me with everything I could handle and go for the total kill. They fet I was young and healthy enough to take it, and hopefully kill it for good leaving me with as many years as possible.
As for the radiation, I'm similar to above. No PEG, minimal sides other than no solid food for about seven weeks. I lost most taste and saliva for about a month or so, but now after 18+ months, I have regained about 90 - 95% of both back.
Best,
John
Your post brings back memories. My enlarged lymph node was biopsied through needle aspiration and I remember asking the nurse to re-read the result to me over the phone, "Negative". Well my wife and two children all gathered and jumped up and down in celebration. Short lived as it turned out and my roller coaster began. Actual biopsy came back positive for squamous cell carcinoma. I still hate those words. Sound a little familiar?
The more common approach is believe it or not to have surgery first as you did. Surgery is always a preferred means of treatment before radiation and can be more effective in cases where an entire tumor can be removed with safe margins. Surgery after radiation is a little more difficult for the surgeon because the tissue is a bit diffferent in consistency but the outcome is the same.
Can you assume it has traveled if in the lymph nodes? Nobody will really know the answer to that. It travels in 22% of cases. On the opposite side it is contained in the regional lymph nodes the other 78% of the time. The lymphs are basically filters and they seem to do a remarkable job. Interestinly the current post-thread about the new cancer test addresses this question in reference to prostrate cancer where a significant number of patients with prostrate cancer who were given the test were found to have cancer cells in the blood. So all current knowledge has pretty much just been stood on its head. The experts themselves say they don't know the significance of the finding.
Become your best advocate, make informed decisions, find a doctor you trust and ride the roller coaster.0 -
Hi Ron
Don’t feel bad about not knowing everything about this stuff we all started the same way. I wish I know of this site when I started my treatment it would have answered a lot of my questions that the doctors never answered.
When my cancer got into my lymph gland that is when I had to do the chemo, other then that the first time was just radiation. Also on the different reports I am not sure I did an MRI with my local oncal doctor that showed a tumor in my head, three weeks later we did a PET at MD Anderson for a second opinion that showed NED.
I got a little Mad at the local oncal man but my daughter then said something to me that I did not think about before, she said Dad don’t be mad at the local oncal doctor because God did a miracle between him and MD Anderson.
All the best to both you and Robyn
Hondo0 -
Hi ZooZooDavid said:okay, I had cancer on my
okay, I had cancer on my tonsil and a lum in my neck.The treatment was radiation first, for me, then the docs thought that should do it.Well, the lump was still there and they kept looking and putting it off, though I knew there was still a problem, until thay found it to be growing so surgery was next.That was one year ago.The side effects of radiation are huge.
Glad to have you back again0 -
Hey David,ZooDavid said:nead and neck
Hey Ron, I have been through it for 3 years now.If you are on-line now I can help with some important ?'s that you need to know about.I will message you again in a bit.
sorry,
david
Sorry pain meds
Hey David,
Sorry pain meds kicked in and I had to take a break. Not feeling well at all today but I will get through it!
I would love to talk to you and so happy to hear you are 3 years out of treatment. That gives me hope.
Have a Dr appt today so may not be on until this evening.
Ron0 -
Thank you Hondo, you are an inspiration as you are always so supportive and positive. This month my wife and I have been reflecting on priorities and hoping for miracles. Anything positive is wonderful news and your daughter was so sweet to point that out. This website, Family, prayers, and faith are helping us through this. I appreciate all of the info, it truly helps to talk to those who have been through it.Hondo said:Hi Ron
Don’t feel bad about not knowing everything about this stuff we all started the same way. I wish I know of this site when I started my treatment it would have answered a lot of my questions that the doctors never answered.
When my cancer got into my lymph gland that is when I had to do the chemo, other then that the first time was just radiation. Also on the different reports I am not sure I did an MRI with my local oncal doctor that showed a tumor in my head, three weeks later we did a PET at MD Anderson for a second opinion that showed NED.
I got a little Mad at the local oncal man but my daughter then said something to me that I did not think about before, she said Dad don’t be mad at the local oncal doctor because God did a miracle between him and MD Anderson.
All the best to both you and Robyn
Hondo
Ron0 -
TREATMENT ROUTE
Ron, sorry to hear our journey has been frustrating, or i should say, even more frustrating. Cancer on a good day when all systems are go in still frustrating.
As far as what treatment options to have I guess depends on the severity of your cancer combined with the general treatment practice of the facility you choose to utilize. I know my Doc. at Washington University in St. Louis is agressive and will recommend surgery,radiation and chemo. I guess next is the severity and ability to use surgery. Mine was cancer of the Right Tonsil with cancer also found in 19 of 23 of the Lymph Nodes on the right side of my neck. I opted for a "full on assault" to hopefully be done with this once and for all. I will not lie, bu the side effects from having all 3 options done are still very much with me today. I will be 10 weeks post treatment tomorrow and the fatigue I have is severe, and I still take 80% of my calories via the feeding tube. With all of this said, I would still decide for the "full on assault."
Hope this helps.
Best!!
Mike0 -
Treatmentluv4lacrosse said:TREATMENT ROUTE
Ron, sorry to hear our journey has been frustrating, or i should say, even more frustrating. Cancer on a good day when all systems are go in still frustrating.
As far as what treatment options to have I guess depends on the severity of your cancer combined with the general treatment practice of the facility you choose to utilize. I know my Doc. at Washington University in St. Louis is agressive and will recommend surgery,radiation and chemo. I guess next is the severity and ability to use surgery. Mine was cancer of the Right Tonsil with cancer also found in 19 of 23 of the Lymph Nodes on the right side of my neck. I opted for a "full on assault" to hopefully be done with this once and for all. I will not lie, bu the side effects from having all 3 options done are still very much with me today. I will be 10 weeks post treatment tomorrow and the fatigue I have is severe, and I still take 80% of my calories via the feeding tube. With all of this said, I would still decide for the "full on assault."
Hope this helps.
Best!!
Mike
Hi Ron,
My diagnosis was a lot like Mikes. We did surgery 1st and then had some teeth removed and then rads and chemo concurrently. I am 10 months out of treatment and doing pretty good.
No it wasn't a pleasure cruise, it was tough, but doable. Just remember YOU CAN DO THIS!
Prayers are out going for you and I am hoping for the best.
Steve0 -
biopsy
it is common to have biopsy results that are either different or to get an initial diagnosis of one thing, yet the final diagnosis states something else. often times the section of a tumor they biopsied was benign, yet sections of the tumor can be malignant. I had a couple of moles removed from my face where they told me it was malignant until the final report came back that they were very very precancerous.those were not cancer, I had them fully removed very early. then last year I had a lump removed from my palate that I had been told for 5 years was nothing, yet when I had my biopsy they said it was low grade mucoepidermoid carcinoma. after the tumor was fully excised they said it was actually low grade mucoepidermoid with some intermediate grade cells. I had 30 radiation treatments due to the intermediate grade. it is always better to know what your options are when you get the call from your doctor and to get a second opinion if you have any concerns.
ask your doctor every question you have. most of the time someone will have radiation before surgery if they (the drs) want to shrink the size of the tumor before surgery. I had surgery then adjunct radiation (they did radiation as a precaution in case there were any cancer cells they missed, despite having clean margins and no spread. they could have watched and waited, but I didn't want to spend all my time worrying that it was going to come back...i may still have days where I will worry, but I know the chances are pretty low now.
wishing you the best, hoping you get good news!0 -
Blunt response, for what it's worthekdennie said:biopsy
it is common to have biopsy results that are either different or to get an initial diagnosis of one thing, yet the final diagnosis states something else. often times the section of a tumor they biopsied was benign, yet sections of the tumor can be malignant. I had a couple of moles removed from my face where they told me it was malignant until the final report came back that they were very very precancerous.those were not cancer, I had them fully removed very early. then last year I had a lump removed from my palate that I had been told for 5 years was nothing, yet when I had my biopsy they said it was low grade mucoepidermoid carcinoma. after the tumor was fully excised they said it was actually low grade mucoepidermoid with some intermediate grade cells. I had 30 radiation treatments due to the intermediate grade. it is always better to know what your options are when you get the call from your doctor and to get a second opinion if you have any concerns.
ask your doctor every question you have. most of the time someone will have radiation before surgery if they (the drs) want to shrink the size of the tumor before surgery. I had surgery then adjunct radiation (they did radiation as a precaution in case there were any cancer cells they missed, despite having clean margins and no spread. they could have watched and waited, but I didn't want to spend all my time worrying that it was going to come back...i may still have days where I will worry, but I know the chances are pretty low now.
wishing you the best, hoping you get good news!
Sorry you and Robyn have had such a terrible couple of weeks. I am truly sorry that you both have had to deal with this. Don't worry about not knowing everything you think you "should" know. I would say to be very wary of anyone who seems to know everything about everything. They don't. Having said that, and with all due respect to everyone here ( who do in fact know a lot about this business), the doctors know more. I would trust them. It is not a perfect science and the number of variables and individual differences are significant. They are in this field for a reason, have extensive training, and have no desire to lose a patient. That is what we're talking about, to be blunt. It's not like a cold or the flu where they can just say "try this" and if it doesn't work, well, you aren't going to die or anything. This is different.
In my case, I did radiation and chemo and surgery because that was what the doctor (who spent quality time with me and who I trust) told me would give me the best chance of beating this. Your treatment plan might be different, but I don't think it's productive to drive yourself crazy second guessing. That doesn't mean you can't be your own best advocate.
Anyways, radiation sucked, no question about it. For that matter chemo did as well. But I lived, and today don't spend one second wondering whether I could have got by without going through it. I have side effects, but I think I can handle them. The way I see it, I would have been gambling with my life to not do what the doctor recommended.
Whatever happens, once you make a decision, go at it 100%.
Wishing you and your wife lots of comfort, courage and strength,
David0 -
Thanksdavidgskinner said:Blunt response, for what it's worth
Sorry you and Robyn have had such a terrible couple of weeks. I am truly sorry that you both have had to deal with this. Don't worry about not knowing everything you think you "should" know. I would say to be very wary of anyone who seems to know everything about everything. They don't. Having said that, and with all due respect to everyone here ( who do in fact know a lot about this business), the doctors know more. I would trust them. It is not a perfect science and the number of variables and individual differences are significant. They are in this field for a reason, have extensive training, and have no desire to lose a patient. That is what we're talking about, to be blunt. It's not like a cold or the flu where they can just say "try this" and if it doesn't work, well, you aren't going to die or anything. This is different.
In my case, I did radiation and chemo and surgery because that was what the doctor (who spent quality time with me and who I trust) told me would give me the best chance of beating this. Your treatment plan might be different, but I don't think it's productive to drive yourself crazy second guessing. That doesn't mean you can't be your own best advocate.
Anyways, radiation sucked, no question about it. For that matter chemo did as well. But I lived, and today don't spend one second wondering whether I could have got by without going through it. I have side effects, but I think I can handle them. The way I see it, I would have been gambling with my life to not do what the doctor recommended.
Whatever happens, once you make a decision, go at it 100%.
Wishing you and your wife lots of comfort, courage and strength,
David
Hi David,
I appreciate you being blunt. I can handle confident info and I would rather it be blunt. Please don't get me wrong I appreciate all of the input as it is valuable to hear all of the many situations. This sharing is helping me to understand that all situations and individuals are different and helps me to know how to move forward. I think what Robyn and I are feeling is we have not been in this situation long enough yet to know how to act, react, let alone do anything. I suppose this will come with time and I truly appreciate your advice. I kept telling Robyn today maybe what I am going through now is preparing me for radiation treatment. Lots of reflection and revelations going on and it is a crazy ride. We do trust the docs (both of them) and inspite of what some might say I really feel we are in good hands. I feel this way for 2 reasons, because of you and the positive outcome and the other is I have been treated with lots of compassion and concern these last 2 weeks. I am scheduled for the PET Thursday eve. When I can talk again, maybe 7-10 days I would love to talk to you. I have questions about the support, nutrition counseling(is it offered?)Flouride trays?? and a few other things. We have the info and will either e-mail or call when it is a good time.
Thanks again
Ron and Robyn0 -
Very Overwelming at FirstRon49 said:Thanks
Hi David,
I appreciate you being blunt. I can handle confident info and I would rather it be blunt. Please don't get me wrong I appreciate all of the input as it is valuable to hear all of the many situations. This sharing is helping me to understand that all situations and individuals are different and helps me to know how to move forward. I think what Robyn and I are feeling is we have not been in this situation long enough yet to know how to act, react, let alone do anything. I suppose this will come with time and I truly appreciate your advice. I kept telling Robyn today maybe what I am going through now is preparing me for radiation treatment. Lots of reflection and revelations going on and it is a crazy ride. We do trust the docs (both of them) and inspite of what some might say I really feel we are in good hands. I feel this way for 2 reasons, because of you and the positive outcome and the other is I have been treated with lots of compassion and concern these last 2 weeks. I am scheduled for the PET Thursday eve. When I can talk again, maybe 7-10 days I would love to talk to you. I have questions about the support, nutrition counseling(is it offered?)Flouride trays?? and a few other things. We have the info and will either e-mail or call when it is a good time.
Thanks again
Ron and Robyn
It will somewhat pass, but my first thoughts (before the education that I know have), when hearing that I had cancer. My thoughts went immediately to frail, discolored, hairless people withering away.
I have not really been personally exposed to someone with cancer as intimately as I have this last few years.
The knowledge, technology and results that are being achieved these days are huge...actually pretty much unbelievable to those that haven't experienced it personally.
I think until you actually start going through it, that doesn't totally sink in...and at times, it's still hard to stay un-paranoid.
Once you get started, you (or at least I) just took on the mind set of getting the most from my treatment and hoping, praying and believing that it will work. To this point, 18+ months post treatment, it has.
I have seen people (patients) in the chemo center that are conducting business, cell phones and laptops in hand, while getting chemo....can you believe that, would you have believed that....
Stay positive, surround yourself with positive people and thoughts. It is a huge part of acceptance and healing.
There's is much for you to learn, and much that you will learn...you are in a good place here. Many people to draw upon for experience, spirituality, and recover.
Anything that I can do, just let me know.
Best,
John0 -
TRUSTRon49 said:Thanks
Hi David,
I appreciate you being blunt. I can handle confident info and I would rather it be blunt. Please don't get me wrong I appreciate all of the input as it is valuable to hear all of the many situations. This sharing is helping me to understand that all situations and individuals are different and helps me to know how to move forward. I think what Robyn and I are feeling is we have not been in this situation long enough yet to know how to act, react, let alone do anything. I suppose this will come with time and I truly appreciate your advice. I kept telling Robyn today maybe what I am going through now is preparing me for radiation treatment. Lots of reflection and revelations going on and it is a crazy ride. We do trust the docs (both of them) and inspite of what some might say I really feel we are in good hands. I feel this way for 2 reasons, because of you and the positive outcome and the other is I have been treated with lots of compassion and concern these last 2 weeks. I am scheduled for the PET Thursday eve. When I can talk again, maybe 7-10 days I would love to talk to you. I have questions about the support, nutrition counseling(is it offered?)Flouride trays?? and a few other things. We have the info and will either e-mail or call when it is a good time.
Thanks again
Ron and Robyn
Ron, from reading your post that I am replying from, it sounds like you and your wife trust exactly what your doctors feel is the best approach. To me, that was key. I trust my ENT to the point I will literally do exactly what he says, no questions asked. It sounds like you are headed in a good direction.
This will all work out, it may not seem like it today, but it will.
BEST!!
Mike0 -
Hi Ron and Robynluv4lacrosse said:TRUST
Ron, from reading your post that I am replying from, it sounds like you and your wife trust exactly what your doctors feel is the best approach. To me, that was key. I trust my ENT to the point I will literally do exactly what he says, no questions asked. It sounds like you are headed in a good direction.
This will all work out, it may not seem like it today, but it will.
BEST!!
Mike
I'm so sorry you are all going through this tough time... I'm sorry any of us are! I know for me that knowing that there are others in the same boat makes me feel not so helpless. Sometimes I wish we could all live near each other to support each other even moreso that we are doing now!
I have a different type of cancer from yours, but believe me, I am scared. The great friends I have made on this board help lift me up more than I could have ever imagined. My boyfriend has also been incredible, and it sounds like you have that support in each other as well. It is so important. As for the miracles you and Hondo mentioned... we all need to pray for miracles. I know I do constantly. They can and will happen, and in the meantime, we have to do all we can to help.
I am the worst about asking questions of my doctors, but I have learned it is so important. I get so flustered that I can't even think straight in there, but if we don't ask questions, they may not think about certain things. For instance, yesterday I asked a question about how horpones may or may not effect the type of cancer I have. Thanks to Elizabeth (on these boards), I mentioned to them her experience about her tumor growing through pregnancies. Because of that they are running some tests on estrogen receptors in the tumor. It's a long shot but it's worth a try... again praying for a miracle!
Ron and Robyn, if there is ANYTHING I can do to help, please don't hesitate to ask... send me an email anytime.
Lots of prayers going out to both of you... I know you will both be just fine.
Nicole0 -
Know how you feelnkimber said:Hi Ron and Robyn
I'm so sorry you are all going through this tough time... I'm sorry any of us are! I know for me that knowing that there are others in the same boat makes me feel not so helpless. Sometimes I wish we could all live near each other to support each other even moreso that we are doing now!
I have a different type of cancer from yours, but believe me, I am scared. The great friends I have made on this board help lift me up more than I could have ever imagined. My boyfriend has also been incredible, and it sounds like you have that support in each other as well. It is so important. As for the miracles you and Hondo mentioned... we all need to pray for miracles. I know I do constantly. They can and will happen, and in the meantime, we have to do all we can to help.
I am the worst about asking questions of my doctors, but I have learned it is so important. I get so flustered that I can't even think straight in there, but if we don't ask questions, they may not think about certain things. For instance, yesterday I asked a question about how horpones may or may not effect the type of cancer I have. Thanks to Elizabeth (on these boards), I mentioned to them her experience about her tumor growing through pregnancies. Because of that they are running some tests on estrogen receptors in the tumor. It's a long shot but it's worth a try... again praying for a miracle!
Ron and Robyn, if there is ANYTHING I can do to help, please don't hesitate to ask... send me an email anytime.
Lots of prayers going out to both of you... I know you will both be just fine.
Nicole
Hi Ron and Robyn, know how you feel, I'm 44yo female from Bunbury Western Australia, who happened upon this site after treatment, wish I had found it before treatment, would have saved a lot of anguish and fear. I was diagnosed Nov 09 with SCC right tonsil T1N1M0, had a lump in my neck and all went from there. Had tonsils removed, 9 back teeth removed, started first chemo (cisplatin) 2nd March and first Radiation 3rd March finished treatment 23rd April, went really well, scan showed all clear and doctors said 98% sure it was HPV related although I smoke and drank. For some reason they don't test in Australia for HPV but are starting to see there may be a need for it, I am pushing for it anyway. I managed to get through my treatment really well I had IMRT radiation and that saved quite a lot of suffering I believe. I also went on a juice and vitamin detox prior to starting treatment and continued the juices through my treatment with an emphasis on Vitamin C powder and Vitamin D drops. I never got a sore throat, never got mouth sores, didn't need a peg. Although I did lose 25 kilos (approx 55 pounds) totally lost the desire to eat when I had no taste buds. My taste started to return 3 weeks after treatment ended and saliva is back to about 60%. If you have any question this is a great place to post and get some answers from real people who are all on the same page. If you would like to ask me anything please feel free to do so. It is a very difficult stage you are going through now, but, it will get better I promised. Not just physically but emotionally it is the hardest thing I have ever had to do. I am now my old self again, the stomach has stopped turning, the mind stopped drifting, I have goals, hopes and dreams again. i thought I lost them all. My thoughts are with you and I will say a prayer for you. Take care, and you will make it through cheers Jen xxxxx0 -
You are a Gem!pascotty said:Know how you feel
Hi Ron and Robyn, know how you feel, I'm 44yo female from Bunbury Western Australia, who happened upon this site after treatment, wish I had found it before treatment, would have saved a lot of anguish and fear. I was diagnosed Nov 09 with SCC right tonsil T1N1M0, had a lump in my neck and all went from there. Had tonsils removed, 9 back teeth removed, started first chemo (cisplatin) 2nd March and first Radiation 3rd March finished treatment 23rd April, went really well, scan showed all clear and doctors said 98% sure it was HPV related although I smoke and drank. For some reason they don't test in Australia for HPV but are starting to see there may be a need for it, I am pushing for it anyway. I managed to get through my treatment really well I had IMRT radiation and that saved quite a lot of suffering I believe. I also went on a juice and vitamin detox prior to starting treatment and continued the juices through my treatment with an emphasis on Vitamin C powder and Vitamin D drops. I never got a sore throat, never got mouth sores, didn't need a peg. Although I did lose 25 kilos (approx 55 pounds) totally lost the desire to eat when I had no taste buds. My taste started to return 3 weeks after treatment ended and saliva is back to about 60%. If you have any question this is a great place to post and get some answers from real people who are all on the same page. If you would like to ask me anything please feel free to do so. It is a very difficult stage you are going through now, but, it will get better I promised. Not just physically but emotionally it is the hardest thing I have ever had to do. I am now my old self again, the stomach has stopped turning, the mind stopped drifting, I have goals, hopes and dreams again. i thought I lost them all. My thoughts are with you and I will say a prayer for you. Take care, and you will make it through cheers Jen xxxxx
Jen, your comments have made such a difference for Robyn & I tonight. The last 2 days have been low points as we just learned the tonsils were negative. We have not had a chance to talk to the Dr yet and only received the news via message board. We feel so incredibly helpless and our minds are reeling asking where is it and where did it come from? Ugh so incredibly difficult! It is so good to hear that at some point we might get some positive news. We are praying for a miracle with the PET. We are waiting to get that appt scheduled. The weekends are agonizing. Robyn and I are trying with all our might to stay positive but fear is winning now due to uncertainty and lack of information. I think we may have to switch drs which I wish we did not even have to think about but I need to have a face to face or even a phone conversation, not an email.
Sorry to be such a downer, definitely the most difficult thing we have ever endured. I know the statistics for survival are great for head and neck and will try to keep that in the forefront.
Thanks again for the encouraging words!
Ron & Robyn0
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