Tonsil Cancer or Lymphoma or Both
(2) Went to see the physician in Feb 2011 and he said its nothing and everything looked normal to him. One tonsil can be bigger than the other and it can just be an ongoing allergy. He prescribed me some allergic medications and after 2 weeks when I went to see him again, the tonsil had retracted to normal state.
(3) Went to another physician at around March 2012 and he said there is nothing wrong he could see and everything is normal. He felt the nodes on the underside of my neck and did not find anything. Suggested me to go for a Barium - swallowing test which I did not take.
Went directly to an ENT in around May 2012. Very first thing he said is that there seems to be nothing wrong. He asked me to direct him to the region of the mouth where I suspect something is wrong. He felt my right tonsil and felt hardening of tissue. Suggested me to get CT scan. He also felt my lymph nodes on neck and did not find anything unusual. Gave me antibiotic for 2 weeks - Augmentin- twice a day (I got CT but did not start antibiotic).
CT scan showed enlarged lymph nodes around 1.6 cm on both the sides, although the right side which is the affected one showed some smaller surrounding lymph nodes too which were slightly enlarged. About 1 month passed by after this scan and nothing serious was pointed out by anyone.
(4) Doc. calls back in and suggests a lymph node needle biopsy on the right side.
Went to get biopsy and radiologist felt the lymph node on the affected right side and could feel the node. Due to something missing in their testing portal the biopsy could not be done during that day. Radiologist however pointed out that the node has not grown any bigger since the CT was taken around 1.5 months ago. May not be carcinogenic.
Started taking Augmentin twice/day for 2 weeks and after the course tonsil on right side appears to be enlarged and more red.
(5) Went to the same primary physician again and asked him to refer to another ENT. He checked tonsil again. He still said that he thinks nothing is wrong but just the tonsil area on the right side seems to be red and inflamed. I was referred to another ENT.
(6) ENT sugested right tonsillectomy followed by biopsy of the tonsil. He explained, something is definitely wrong with the tonsil and should be taken out. It can or cannot be malign but that could be figured out after tissue biospy of the tonsil and then the case could be followed up.
(7) Did not get surgery done but went to another ENT surgeon/professor. His resident doctor checked everything and did a physical exam under my armpits but did not find anything. He also said that 1.6 cm of lymph node in that area of the neck can be acceptable.
(8) Senior Dr./professor came and had a look and he suggested me to take aspirator or fine needle lymph node biopsy right then. 2 of his MD docs came and performed the needle biopsy on my lymph node. Both doctors looked the sample under the microscope and declared that it is SCC of tonsil and pointed towards HPV infection.
(9) Detailed report came in later and no HPV was found, however, SCC of tonsil was confirmed. PET scan was done.. Doc calls in the evening and says he doesn't understand the scan very well as several spots lighted up in the entire lymphatic system including tonsils, nodes on neck, armpits, spleen, 3 nodes below liver, groin etc. He says, he is not sure if it is SCC of tonsils (eventhough their tests says so).
(10) He now thinks it can be lymphoma or may be both SCC and lymphoma OR it can be some other infection going on in the system. He called me in for yet another physical exam of my armpits and groin area. I did so and he could not feel any enlarged node in my armpits or groin area. He suggests taking out a lymph node with help of an ultrasound or CAT scan since no node can be felt and then send it for biopsy.
(11) I stand extremely confused now as their own diagnostic tests are contradictory. Firstly I do not exhibit any signs of any serious illness. No fever, weakness, fatigue, weight loss, pain etc. etc. It was only me who pushed for ENT docs to have a look and they are not yet able to reach to a conclusion. I was diagnosed for HPV which came negative after the test. The tests confirmed it is SCC of tonsil but the doctor now says he doesnt think it is SCC and it can be lymphoma instead.
(12) The biopsy of my cervical lymph node and tissue biopsy of my tonsil came out negative for lymphoma but shows SCC with P16 HPV. The aspiration biopsy on lymph node was negative for P16. I have never indulged into random sexual behavior so a possibility of HPV just seems to be impossible. In fact I have been studying all my life and have been in a monogamous relationship with wife only. She is negative for all HPV strains as well. Until the day of biopsy the doctors were absolutely certain that it will come out negative for SCC and it is lymphoma. I was told that just a pea sized tissue will be extracted from inflamed tonsil but they ended up taking out quite a big chunk (1.2 X 0.9 X 0.8 cm). On asking why did they do it, doc said a larger section is required for lymphoma prognosis.
(13) Anyway, the entire tonsil has not yet been removed. I was sent to a surgeon who examined my armpit and groin area where the lymph nodes lit up but he said he could not feel anything and everything seems to be normal. He sent us back and told us that he will talk to the ENT surgeon. They might have discussed and now ENT wants the surgeon to perform a CAT scan on right armpit and surgically remove a lymph node buried deep inside. This lymph node will now be biopsied. He wants to find out if this node shows SCC or lymphoma or is just benign.
(14) I am not agreeing to this plan because I feel it is unnecessary. When the most inflamed part of the lymphatic system - the right tonsil and associated lymph node was negative for lymphoma, is their a need to do such an invasive test, specially when the nodes are not swollen and cant be felt during physical examination ? Even if I believe I have SCC of tonsil and lymph node, does the SCC spread in this fashion that it will be present in the entire lymphatic system without any adverse symptoms in me?
(15) Why is the cervical lymph node not growing in size and in fact has become smaller ? This doesn't seem to be like a typical case of tonsil cancer and neither lymphoma. Is it a possibility that it is just some viral infection that has affected the entire lymphatic system and body is fighting against it? No blood tests have been done so far and the docs think they won't get any information from them. The tonsil basically got inflamed after taking antibiotics (Augmentin) for 2 weeks. Before that the 1st ENT I went to could not even see anything visually until I asked him to feel the tissue on the right tonsil.
(16) As far as I understand, viral infections in tonsil respond to antibiotics and the cancer cells wont. Why did the tonsil respond to antibiotics if it was all SCC. Can the PET-SCAN be a false positive, and should we repeat the scan before going into the body fishing for the lymph nodes ?
(17) Is it SCC everywhere in the lymphatic system, or lymphoma below the head but SCC in the tonsil and neck or its just another infection which mimics cancer ?
Comments
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wow
Hi ricky_b,
Where are you, The Twilight Zone? My head is spinning just reading through your ordeal. I don’t understand the problem of diagnosis if they are using a microscope on the samples. Isn’t a cancer cell obvious? Well, I don’t know and I hope something productive comes from all your visits.
By the way, I never felt sick or ran a fever; I felt a lump on my neck while shaving. Ta da, cancer. To this day I never felt anything. Also, I have not been promiscuous, but I was HPV+, go figure (and my wife is hpv-).
Best,
Matt0 -
My Head Is Spinning Too
What a history! Only one small thing I can contribute. PET Scans can have false positives. A PET uses radioactive glucose to find the cells which are hungriest. In most cases, cancer cells are hungrier than normal cells. But there can be other reasons for a cell to be abnormally hungry: like an infection or arthritis. If fact, a PET Scan does not tell us much about the brain because the brain is so active and hungry that a brain tumor does not make much difference. I asked my oncologist this directly, whether the PET will scan the brain. He said yes, but the results are unlikely to show much because the brain is so active. Rick.0 -
SameCivilMatt said:wow
Hi ricky_b,
Where are you, The Twilight Zone? My head is spinning just reading through your ordeal. I don’t understand the problem of diagnosis if they are using a microscope on the samples. Isn’t a cancer cell obvious? Well, I don’t know and I hope something productive comes from all your visits.
By the way, I never felt sick or ran a fever; I felt a lump on my neck while shaving. Ta da, cancer. To this day I never felt anything. Also, I have not been promiscuous, but I was HPV+, go figure (and my wife is hpv-).
Best,
Matt
Matt,
I went to my ENT only for the small lump I found right under my jaw line on the right side; like you never felt sick, when ENT scoped mt throat and asked if I realized right tonsil was enlarged ..answered no, he asked if it hurt when swallowing answer again no, he asked about cough and change in voice same answer....so if it wasn't for finding the lump who knows how long this would have gone one...Hpv was never brought up. I have to agree I was also confused reading ricky_b's post.
Linda0 -
Understand your confusion
but dont overthink the situation. Histopathology differentiates scc from lymphoma quite easily, so you can believe them when the bx shows scc. SCC tends NOT to spread diffusely throughout lymphatics. It commonly spreads by local and regional direct spread, and by stepwise progression within lymphatics, and can metastesize to other organs, but as isolated spots.
Inthe case of SCC, HPV is not necessarily an STD, sodont spend another second worrying aboutthat.
You need additional tissue diagnosis. Your other PET scan findings need explained, and what hasbeen proposed isthe best and fastest way to obtain that. Respectfully, you need to now be a good patient and not hamstring the physicians you have chosen. It srves no purpose to not follow their advice in this. Your pointsraised in 14 and16 are potentially harmful to you. and frankly, as a lay person you are dangerous toyourself whenyoustartpicking and choosing your healthcarethis way.
With respect to 16, for instance, there is an expression that is that the two facts )1 that you took antibiotics and 2) that the tonsil shrank may both be true, but these may be completely unrelated. If unrelated, the conclusions you just derived are invalid.
Your case isnt straightforward, but still can be viewed quite simply. First, you have scc of th tonsil. Second, you have unexplained PET findings that require additional testing. Only a tissue sample obtained from one of these sites will put the issue to rest.
Best to you,
Pat0 -
Could Be Any Combination....
My History is STGIII SCC HPV+ Tonsils (primary), and a lymphnode on the same side as a secondary.
Started off as a very slight irritation and actually over a few months, never got any worse...just not any better either.
This was from October 2008 - January 2009...
Mild antibiotics at first, did nothing..., Levaquin next...did nothing. Scheduled with ENt for January 2, 2009... during the Holidays the lymhnode popped up.
Janaury 2, the ENT scoped me, sent me for a CT and had me come right back. He told me he was 95% sure I had SCC Throat Cancer, ad since I wasn't a tobacco user or no family history, more than likely it was HPV+ derived.
January 5th, he took the tonsils out and did a quick biopsy...confirmed, STGIII SCC Tonsils. He sent the tissue of and a few weeks later it came back HPV+.
Bottom line, I don't think there is a "classic" case of tonsil cancer...
As for you not agreeing to the #14, biopsy is the best and only way of confirming cancer that I'm aware....so why wouldn't you agree to it?
As for the CT/PET, they are tools...and yes, they can light up from cancer, but also other things like infection, residual damage from treatment or injury, etc....
To me, the most deifintive way to determine cancer is through biopsy of suspect areas.
Best,
John0 -
1 important findingSkiffin16 said:Could Be Any Combination....
My History is STGIII SCC HPV+ Tonsils (primary), and a lymphnode on the same side as a secondary.
Started off as a very slight irritation and actually over a few months, never got any worse...just not any better either.
This was from October 2008 - January 2009...
Mild antibiotics at first, did nothing..., Levaquin next...did nothing. Scheduled with ENt for January 2, 2009... during the Holidays the lymhnode popped up.
Janaury 2, the ENT scoped me, sent me for a CT and had me come right back. He told me he was 95% sure I had SCC Throat Cancer, ad since I wasn't a tobacco user or no family history, more than likely it was HPV+ derived.
January 5th, he took the tonsils out and did a quick biopsy...confirmed, STGIII SCC Tonsils. He sent the tissue of and a few weeks later it came back HPV+.
Bottom line, I don't think there is a "classic" case of tonsil cancer...
As for you not agreeing to the #14, biopsy is the best and only way of confirming cancer that I'm aware....so why wouldn't you agree to it?
As for the CT/PET, they are tools...and yes, they can light up from cancer, but also other things like infection, residual damage from treatment or injury, etc....
To me, the most deifintive way to determine cancer is through biopsy of suspect areas.
Best,
John
Thanks all for your time in responding to my story. It helps a lot to interact with people going or have gone through this phase. I went to see another ENT and he pointed out a very interesting thing. I was administered TB vaccine as a kid in my country which is known to show false positive for TB infection in X-Ray of lungs and PET scans. In my grad school, I was in fact advised by my docs in 2006 not to take TB related tests in future as they will show up as false positives.0 -
Tonsil cancer.ricky_b said:1 important finding
Thanks all for your time in responding to my story. It helps a lot to interact with people going or have gone through this phase. I went to see another ENT and he pointed out a very interesting thing. I was administered TB vaccine as a kid in my country which is known to show false positive for TB infection in X-Ray of lungs and PET scans. In my grad school, I was in fact advised by my docs in 2006 not to take TB related tests in future as they will show up as false positives.
I agree with all the comments made here. I don't know much about
the ins & outs of all the tests, terms and things related to our
cancers, maybe I'm a little naive thats why I come to this board
for answers. As for my tonsil cancer I had a 3.7 x 1.8 x 3.0 mass
on the left tonsil only, no other lump or lymph involvment anywhere.
Did a biopsy which confirmed scc stage II, I had 33rads only and God
willing that did the trick.
Anyway Ricky I pray for the best outcome which ever path you choose.
God bless
Tonsil dad,
Dan.0 -
over thinking or being pro-active ?
Ricky,
Hey, what you have been through already is a mind spin. People get upset with my mind set but cancer is cancer. If you have it, get it out ! But saying this I believe we as cancer patients have the god given right to have all the information we ask for. And sadly in most cases we don't know what to ask, or how. You need to find a team you trust, and also in most cases even me acceptance we have this disease. I hope this can be resolved quickly....as waiting too long is not a good thing ! Keep us posted Ricky, we are all pulling for you ! Katie0 -
Hi ..katenorwood said:over thinking or being pro-active ?
Ricky,
Hey, what you have been through already is a mind spin. People get upset with my mind set but cancer is cancer. If you have it, get it out ! But saying this I believe we as cancer patients have the god given right to have all the information we ask for. And sadly in most cases we don't know what to ask, or how. You need to find a team you trust, and also in most cases even me acceptance we have this disease. I hope this can be resolved quickly....as waiting too long is not a good thing ! Keep us posted Ricky, we are all pulling for you ! Katie
Wow..complicated no doubt. But here is my 2 cents (and I am no doctor)
1. Irregardless of all the pionts you shared, there is no better approach (my opinion) when cancer is suspected than agrresive.
2. The human body is wonderfully complicated and so many things can be related, yet unrelated and as you will hear on this site so many times "everybody's body responds differently".
3. You, as I, are no doctor, they are not perfect and if it appears to be as difficult as it is for them, then you need to now step back and let them do what they need to do....and if you do end up with any type of cancer, you will grow to appreciate the more aggresive doctors you come across during your treatments, not the opposite.
I pray the best outcome and that all are wrong and you have no cancer!!
Best,
Tim0 -
FNAs are no goodricky_b said:1 important finding
Thanks all for your time in responding to my story. It helps a lot to interact with people going or have gone through this phase. I went to see another ENT and he pointed out a very interesting thing. I was administered TB vaccine as a kid in my country which is known to show false positive for TB infection in X-Ray of lungs and PET scans. In my grad school, I was in fact advised by my docs in 2006 not to take TB related tests in future as they will show up as false positives.
Pardon me if it has been mentioned, but Fine Needle Aspirations are almost worthless for a primary diagnosis. They produce too many inconclusive or false negatives, as they simply don't provide enough materiel. They are done because they are cheap. They are fine if a relapse of a known cancer is suspected, as the pathologist already knows what they are looking for.
Second opinion! One saved my life after both a primary physician and an oncologist (after excisional node and bone marrow biopsies) decided that I had a virus. Didn't. I had an aggressive unknown sub-type of a rate T-Cell lymphoma. Get another set of eyes on your case.0 -
Rare findingsTim6003 said:Hi ..
Wow..complicated no doubt. But here is my 2 cents (and I am no doctor)
1. Irregardless of all the pionts you shared, there is no better approach (my opinion) when cancer is suspected than agrresive.
2. The human body is wonderfully complicated and so many things can be related, yet unrelated and as you will hear on this site so many times "everybody's body responds differently".
3. You, as I, are no doctor, they are not perfect and if it appears to be as difficult as it is for them, then you need to now step back and let them do what they need to do....and if you do end up with any type of cancer, you will grow to appreciate the more aggresive doctors you come across during your treatments, not the opposite.
I pray the best outcome and that all are wrong and you have no cancer!!
Best,
Tim
FNA biopsy was done on the inguinal lymph node which had PET signal of around 10 units that is around 4 units more than the cancerous cervical node on the right side of the neck. The findings are new and the entire team of doctors were shocked. I was diagnosed with asymptomatic Sarcoidosis and that was the reason for positive PET scan of all the nodes of the lymphatic system and the Spleen. Inguinal lymph node was chosen as the site was remote from the head and neck area. Doctors are not worried about the Sarcoid as it is asymptomatic and need no attention at this point. So, good news - there is no cancer in rest of the body and PET was false positive due to Sarcoid. My case was also presented to the Tumor board of the hospital by the doctor. SCC is therefore localized to right tonsil and lymph node on the same side.
FNA biopsy was repeated on the left lymph node of the neck to determine if that is also cancerous like the right side or it is Sarcoid. Unfortunately biopsy came out inconclusive. No Sarcoid, Lymphoma and SCC. The radiation doctor doesn't want to leave it unradiated and wants to treat it as a cancer node also. The treatment plan given to me is 35 rads - Tomotherapy on right tonsil tumor and lymph node and left side lymph node with 3 rounds of Chemo-Cisplatin along with the rads. The other option would have been surgical excision of the left lymph node and then deciding whether or not the left side to be radiated. The radiation doc still considers both nodes to be radiated for the safest bet. Surgery of the tonsil and affected lymph node has been ruled out due to my unique anatomy of an artery too close to the tonsil and also due to the morbidity of the procedure. Rads an Chemo will still be needed and therefore docs finalized on the aforementioned plan which has to be started from Oct 15th. Doc assured that the radiation on the left node (supposedly benign) will be less intense than right side. I am extremely worried about excruciating throat pain and dry mouth situation which people have to go through. Also I have denied to put a PEG tube in the stomach as I'm determined to try hard to swallow food naturally. Any comments regarding coping mechanisms with side affects will be very helpful.0 -
First of all....Hallauha, they finally came to a conclusion!!ricky_b said:Rare findings
FNA biopsy was done on the inguinal lymph node which had PET signal of around 10 units that is around 4 units more than the cancerous cervical node on the right side of the neck. The findings are new and the entire team of doctors were shocked. I was diagnosed with asymptomatic Sarcoidosis and that was the reason for positive PET scan of all the nodes of the lymphatic system and the Spleen. Inguinal lymph node was chosen as the site was remote from the head and neck area. Doctors are not worried about the Sarcoid as it is asymptomatic and need no attention at this point. So, good news - there is no cancer in rest of the body and PET was false positive due to Sarcoid. My case was also presented to the Tumor board of the hospital by the doctor. SCC is therefore localized to right tonsil and lymph node on the same side.
FNA biopsy was repeated on the left lymph node of the neck to determine if that is also cancerous like the right side or it is Sarcoid. Unfortunately biopsy came out inconclusive. No Sarcoid, Lymphoma and SCC. The radiation doctor doesn't want to leave it unradiated and wants to treat it as a cancer node also. The treatment plan given to me is 35 rads - Tomotherapy on right tonsil tumor and lymph node and left side lymph node with 3 rounds of Chemo-Cisplatin along with the rads. The other option would have been surgical excision of the left lymph node and then deciding whether or not the left side to be radiated. The radiation doc still considers both nodes to be radiated for the safest bet. Surgery of the tonsil and affected lymph node has been ruled out due to my unique anatomy of an artery too close to the tonsil and also due to the morbidity of the procedure. Rads an Chemo will still be needed and therefore docs finalized on the aforementioned plan which has to be started from Oct 15th. Doc assured that the radiation on the left node (supposedly benign) will be less intense than right side. I am extremely worried about excruciating throat pain and dry mouth situation which people have to go through. Also I have denied to put a PEG tube in the stomach as I'm determined to try hard to swallow food naturally. Any comments regarding coping mechanisms with side affects will be very helpful.
you've been dealing with all this for 5 or 6 weeks, without knowing anything for sure...that would have made me crazy with anxiety.
I just finished treatment on Aug. 28th (tho I finished radiation back in June)...I had 6 Cisplatin treatments, with the last three also having 5FU in a fanny pack.
I went ahead and got the tube before I started treatment, because I weighed under 100 lbs to start, and I didn't want to go thru all this and end up starving to death. Turned out, I didn't need my tube until the last 3 chemo treatments....and that was because 5FU turned my mouth into hamberger.
Coping is a matter of being positive....knowing that you are not only fighting for your life, but that you are going to win that fight. During radiation, you get into a whole new schedule...every day is the same...same time, same station...what I did was ask God to get me thru each day on a daily basis. That and I drank a ton of water, ate food till about the 3rd week, then switched to Boost and Ensure. Nothing had any taste, so I couldn't get interested in eating....getting a set amount of calories down was way easier with the prepared drinks.
Part of coping, also was allowing others to help me. That wasn't easy, as I'm pretty independent, and used to doing for myself. But I needed the help of family and friends by the time I was in radiation...I needed rides to rads, since I also went to chemo everyday for amifostine (a nasty drug that makes you sick on a daily basis, but protects the saliva glands)....I needed my husband to take over all horse care, dog care, house care, cooking...really....I just wanted to sleep (another coping mechanism that you will want to use.)
Another biggie for me was milk...whole milk goes down without any sting, hydrates you and feeds you...helps get food down....it was my manna...and I drank a gallon every two days.
This is what Kent Cass tell us.....BELIEVE!!!You are going to get thru this, so get used to the idea....
p0 -
wow, you've been through the ringer alreadyricky_b said:Rare findings
FNA biopsy was done on the inguinal lymph node which had PET signal of around 10 units that is around 4 units more than the cancerous cervical node on the right side of the neck. The findings are new and the entire team of doctors were shocked. I was diagnosed with asymptomatic Sarcoidosis and that was the reason for positive PET scan of all the nodes of the lymphatic system and the Spleen. Inguinal lymph node was chosen as the site was remote from the head and neck area. Doctors are not worried about the Sarcoid as it is asymptomatic and need no attention at this point. So, good news - there is no cancer in rest of the body and PET was false positive due to Sarcoid. My case was also presented to the Tumor board of the hospital by the doctor. SCC is therefore localized to right tonsil and lymph node on the same side.
FNA biopsy was repeated on the left lymph node of the neck to determine if that is also cancerous like the right side or it is Sarcoid. Unfortunately biopsy came out inconclusive. No Sarcoid, Lymphoma and SCC. The radiation doctor doesn't want to leave it unradiated and wants to treat it as a cancer node also. The treatment plan given to me is 35 rads - Tomotherapy on right tonsil tumor and lymph node and left side lymph node with 3 rounds of Chemo-Cisplatin along with the rads. The other option would have been surgical excision of the left lymph node and then deciding whether or not the left side to be radiated. The radiation doc still considers both nodes to be radiated for the safest bet. Surgery of the tonsil and affected lymph node has been ruled out due to my unique anatomy of an artery too close to the tonsil and also due to the morbidity of the procedure. Rads an Chemo will still be needed and therefore docs finalized on the aforementioned plan which has to be started from Oct 15th. Doc assured that the radiation on the left node (supposedly benign) will be less intense than right side. I am extremely worried about excruciating throat pain and dry mouth situation which people have to go through. Also I have denied to put a PEG tube in the stomach as I'm determined to try hard to swallow food naturally. Any comments regarding coping mechanisms with side affects will be very helpful.
your determination to get answers is admirable. should serve you well in coping with treatment!
I had rads and chemo (erbitux) for HPV+ Tonsil SCC. the pain was not excruciating for me, not anywhere near that. only time I had prescription pain meds was following insertion of the chemo port and PEG tube.
don't get me wrong, rads are a real drag--but pain was the least of it. tylenol got me through it. also ativan for vomiting, silver sulfadiazine for the burn on the outside of my throat, and magic mouthwash for mouth irritation.
and I just said this in another thread, but I'm glad I got the PEG--even though I never had trouble swallowing. eating is difficult when you can't taste anything, your mouth is dry, and food irritates. I also lost a lot of weight, and with tube feeding I could always get my calories.
best wishes, you'll pull through this.0 -
Similar
Continued from my post above...
STGIII Right Tonsil and lymphnode, same side.
In my case, I did have the tonsils out, no other surgery, rads to both sides (less on the left)...Cisplatin, Taxotere, 5FU, then seven weekly doses of Carboplatin and 35 daily rads.
I also had no PEG...minimal pain as BSB stated above, no serious neck burns, never sick as for vomiting.
I did lose taste and saliva, but most all returned eventually.
There are a few that did continue to eat solid food. Around week three of rads, I swapped to Ensure and sliced peaches, that with liquid meds.
As for the PEG or anything else the MD's prescribe...do as the recommend.
You sound determined to do it your way and on your terms.... That only works for very few...eventually most will do what ever they have to do to get through treatment, and move on.
Best,
John0 -
the plan is set
ricky_b,
Well, we got that figured out, finally. I mentioned you being in the twilight zone on my first post, it now looks like nothing too unusual, good for you.
Going PEGless, some do, I did not but I always managed to drink at least one meal a day. Pain was never a big issue for me, but sore throat (not your typical normal person sore throat) and sore mouth were a challenge. I burned through a six pack of Magic Mouth Wash for the throat and mouth. I loved the stuff. Funny thing, today I can barely stand the Magic Mouth Wash, tastes icky.
For radiation I had to drop one tablet of Lorazapam for the anxiety (never liked the mask).
For neck burns (worst pain of treatments) weeks 6, 7, & 8 Silver Sulfadiazine Cream, great stuff, takes all the pain away. It is messy.
See I had it good, drugs for my mouth and throat, drugs for my brain and medication for my burns.
I started drinking gallons of water back in February and I am still drinking gallons today. My swallowing worked well at all times. My throat got pretty narrow for a few weeks, but I still worked at swallowing.
Who knows, you might do real well and suffer very few of the possible side effects.
I feel pretty lucky.
Best,
Matt0 -
holy crap, Batmanricky_b said:Rare findings
FNA biopsy was done on the inguinal lymph node which had PET signal of around 10 units that is around 4 units more than the cancerous cervical node on the right side of the neck. The findings are new and the entire team of doctors were shocked. I was diagnosed with asymptomatic Sarcoidosis and that was the reason for positive PET scan of all the nodes of the lymphatic system and the Spleen. Inguinal lymph node was chosen as the site was remote from the head and neck area. Doctors are not worried about the Sarcoid as it is asymptomatic and need no attention at this point. So, good news - there is no cancer in rest of the body and PET was false positive due to Sarcoid. My case was also presented to the Tumor board of the hospital by the doctor. SCC is therefore localized to right tonsil and lymph node on the same side.
FNA biopsy was repeated on the left lymph node of the neck to determine if that is also cancerous like the right side or it is Sarcoid. Unfortunately biopsy came out inconclusive. No Sarcoid, Lymphoma and SCC. The radiation doctor doesn't want to leave it unradiated and wants to treat it as a cancer node also. The treatment plan given to me is 35 rads - Tomotherapy on right tonsil tumor and lymph node and left side lymph node with 3 rounds of Chemo-Cisplatin along with the rads. The other option would have been surgical excision of the left lymph node and then deciding whether or not the left side to be radiated. The radiation doc still considers both nodes to be radiated for the safest bet. Surgery of the tonsil and affected lymph node has been ruled out due to my unique anatomy of an artery too close to the tonsil and also due to the morbidity of the procedure. Rads an Chemo will still be needed and therefore docs finalized on the aforementioned plan which has to be started from Oct 15th. Doc assured that the radiation on the left node (supposedly benign) will be less intense than right side. I am extremely worried about excruciating throat pain and dry mouth situation which people have to go through. Also I have denied to put a PEG tube in the stomach as I'm determined to try hard to swallow food naturally. Any comments regarding coping mechanisms with side affects will be very helpful.
you are one rare dude. Sarcoidosis is a rare disease to begin with. My mother had sarcoidosis 25 years ago. It presented with double vision as a tumor grew behind one of her eyes. She also had nodes in the hilum of her lung. Took steroids for a few months anf it all went away. This finding puts you back in the game! Carry on.
Pat0 -
Started finally with chemo/radsSkiffin16 said:Similar
Continued from my post above...
STGIII Right Tonsil and lymphnode, same side.
In my case, I did have the tonsils out, no other surgery, rads to both sides (less on the left)...Cisplatin, Taxotere, 5FU, then seven weekly doses of Carboplatin and 35 daily rads.
I also had no PEG...minimal pain as BSB stated above, no serious neck burns, never sick as for vomiting.
I did lose taste and saliva, but most all returned eventually.
There are a few that did continue to eat solid food. Around week three of rads, I swapped to Ensure and sliced peaches, that with liquid meds.
As for the PEG or anything else the MD's prescribe...do as the recommend.
You sound determined to do it your way and on your terms.... That only works for very few...eventually most will do what ever they have to do to get through treatment, and move on.
Best,
John
Received 1st cisplatin chemo and tomotherapy today.. since the biopsy on left side was inconclusive docs decided to radiate cervical node on left side as a malignant one too.. no silver based ointment for skin rash is prescribed but instead calnedula ointment is to be used everytime after radiation and during the night.. 1 question keeps hassling me.. should they have surgically removed the right tonsil and lymph node and then proceed with this treatment? Also they are giving me ONLY cisplatin during chemo and no 5FU or any other combi.. looks like a different approach than standard treatments.0 -
nopericky_b said:Started finally with chemo/rads
Received 1st cisplatin chemo and tomotherapy today.. since the biopsy on left side was inconclusive docs decided to radiate cervical node on left side as a malignant one too.. no silver based ointment for skin rash is prescribed but instead calnedula ointment is to be used everytime after radiation and during the night.. 1 question keeps hassling me.. should they have surgically removed the right tonsil and lymph node and then proceed with this treatment? Also they are giving me ONLY cisplatin during chemo and no 5FU or any other combi.. looks like a different approach than standard treatments.
this is one of the several permutations of "standard.". Dont sweat the little details. Carry on. Are they treating your sarcoidosis at the same time?0 -
No Exact Standardricky_b said:Started finally with chemo/rads
Received 1st cisplatin chemo and tomotherapy today.. since the biopsy on left side was inconclusive docs decided to radiate cervical node on left side as a malignant one too.. no silver based ointment for skin rash is prescribed but instead calnedula ointment is to be used everytime after radiation and during the night.. 1 question keeps hassling me.. should they have surgically removed the right tonsil and lymph node and then proceed with this treatment? Also they are giving me ONLY cisplatin during chemo and no 5FU or any other combi.. looks like a different approach than standard treatments.
I think the majority of places use similar Tx plans, but more what they have the best results with at the time.
For me, they did take the tonsils out, but not the tumor. They opted to see what effects the chemo and rads would have as the tumor was close to the carotoid.
In my case it was a good call...tumor melted away, no signs since.
I did have a combination of four tyoes of chemo over sixteen weeks...seven of those was concurrent weekly with rads.
But several here have all kinds of variations to what I had..., or me to them I guess depends on how you look at it.
Best,
John0 -
No treatment given for Sarcoidlongtermsurvivor said:nope
this is one of the several permutations of "standard.". Dont sweat the little details. Carry on. Are they treating your sarcoidosis at the same time?
They are not/ worried about Asymptomatic sarcoid at this time.. they think that is much less of an issue and can be solved later by steroid medicines.. in the sheet of what foods and veggies to avoid there is typically every form of anti oxidant source. The reason given is that the anti oxidants may save even cancer cells from dying and may render the treatment less effective.. this was something new..0
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