I am 51, never been sick, and I have just been diagnosed with cancer. The cancer is in my neck lymph nodes but the Doctor can't find the primary tumor. He says it's called CUP or carcinoma of an unknown primary. From what I've read on the web, survival rates are low. Does anyone have anything to share about this type of cancer, which I've never even heard of.
Thanks.

I am so sorry to hear of your diagnosis. My 19 year old son has cancer and it has been a difficult year for us. It was hard for them to find my son's primary tumor also. It is good if the primary can be found since it is possible sometimes for them to do surgery and/or radiation at the primary site.

My son's cancer had spread to his bone marrow. They did CT scans and other scans of his whole body and still couldn't find the primary by the time they placed his central line (a port-a-cath) and started chemo. Finally they did a PET scan and a spot lit up in his left foot. An MRI was then done of his left foot and then a fine needle biopsy of the tumor. There was never an noticeable lump or pain in his foot. The doctors and medical students would come by his room after the tumor was found just to look at his feet. They would look at and examine the left foot and then say, "Show me your other foot." There was no difference.

If you haven't had a PET scan done, encourage your doctors to try that before they give up on finding the primary. It is a newer test and the results require more tests and confirmation, but the idea is that a radioactive(but harmless to you) glucose solution is injected, wait in a dark quiet room for an hour for the glucose to be taken in by cells in your body and then do the scan. Cells that are growing faster would take in more of the glucose and this would show on scans.

I hope that the primary can be found and no matter what that you can beat this disease.

I am sorry you have to go through this. It is a very stressful time, but you will get through this. I can only tell you what I have learned from personal experience and in the last 3 years since my diagnosis. The location of the cancerous lymph node can sometimes determine where the primary cancer is. I had a cancerous lymph node in my neck and had a ct and pet scan however my primary tumor was never detected due to it being microscopic. The doctor stated that because of where my lymph node was, he believed my cancer to be in my tonsil, tongue or somewhere else in the oropharynx region. I had a tonsillectomy when I had my neck disection and sure enough, the cancer was in my left tonsil. It was sqamous cell carcinoma. I then had chemo and radiation, and although not a walk in the park, I am still here to talk about it 3 years later. So my point is, do not get all worked up over statistics. Everybody is different and mental attitude has alot to do with recovery. Good luck to you.

Thank you for your responses. I had a Pet Scan done and that showed that the cancer has spread to the lymph nodes in my neck including one swollen node in my left armpit. The Pet Scan did not show the primary tumor. My oncologist and ENT do not think its neck cancer because my panendoscopy came out clean and because there are cancerous nodes in my supraclavicular area (collar bone). I'm getting a second opinion this week from a neck cancer specialist at Memorial Sloan-Kettering.

kafish67,
My friend had stage4 Squamous cell of the left tonsil. Can I ask how did you find yours...was it a lump in your neck?What stage? And do you still suffer from side effects..i.e. dry mouth? My friend was 37 years old, he is one year out of tx and doing well! Thanks!

Usually when the primary isn't found, they take a "best guess" as to what it could be based on where the tumor grew and the pathology. At some point treatment is decided based on the "best guess" knowledge.

Because CUP is by definition at least second stage cancer, and sometimes third stage, the prognosis is certainly not as good as with some cancers that can be discovered at the first stage. However, yhe prognosis for CUP has improved somewhat since the 80's, especially since some of the newer chemotherapies like taxol have been available.

At some point your doctors will recommend a treatment based on their best estimates of what it may be, and that's often good enough, believe it or not, especially since many chemotherapies are effective for several different types of cancer.

My case was somewhat different than yours in that it was a lymph node in the groin with similarities to squamous and small cell (poorly differentiated), so I was treated with surgery, chemotherapy (taxol and carboplatin) and radiation to the area. I finished treatment four years ago and so far have not had a reoccurrence.

If you haven't already done so, do a search for "cancer of unknown primary" and you should find a few very useful sites.

Please also keep us posted on your progress and try to remember this...when prognoses are given, they are referring to an average survival rate. An "average" means that some people survive longer and some don't...but there's no reason not to believe that YOU won't be one of those who survive longer!

Ruth

Thank you for your reply. My oncologist refuses to give a best guess and says the primary could be anywhere. I hope that Sloan Kettering can find my primary and kill it. I'll keep you posted. Thanks everyone for responding; it has given me some comfort.

Hi I am sorry to hear about your diagnosis. My father is 59 now but was only 56.5 when he was diagnosed with cancer and he too, had never been sick before then. He had a lump in his neck that turned out to be squamous cell cancer and for a while they could not find the primary. He did every scan in the world, (cat, pet,etc) and finally found out the primary from the ENT doctor who was assigned to the case. The primary ended up being in the nasal pharanyx but they would have never known it was there if the small lump in his neck had not appeared. He completed radiation and chemo at the same time and it was successful. It has been 1 year since his last treatment and so far he is still cancer free. Being his only daughter and primary caregiver I had alot of questions that I was scared to ask, mainly because I was scared of the answers. I found alot of my answers on line by simply going to www.ask.com and asking a question or putting something in and letting it give me a definiton. I also always ask the doctors how to spell anything that I am not sure of so that I can look it up online. You would be amazed at how much comfort it gives you to at least look up the strange things they are saying. I would be happy to talk to you or your family in more detail about my dad's story. You are welcome to contact me directly at christycarpenter@***.com
You and your family are in my prayers. Good Luck
-Christy

Thank you Christy. What a difference a day makes on this cancer roller coaster. My wife and I traveled to New York on Friday to get a second opinion from Sloan Kettering as we were disappointed with the opinion from my New Jersey oncologist. Frankly, I was reluctant to get a 2nd opinion as I expected the same opinion from Sloan. My NJ oncologist had recommended a generic "empirical chemotherapy" treatment, based on his opinion that my primary was unknown. While he wouldn't give me a response rate, my research had indicated a response rate of 30-45% for the recommended treatment. Further, he told me that if the cancer responded to treatment, I could expect to be on chemo for the rest of my life as there would be no cure. Sounded bleak to me. I thought I probably had some type of neck cancer due to the involvement of the lymph nodes in my upper and lower neck. However, both my oncologist and ENT rejected my thinking explaining that the primary was probably not in the neck because lymph nodes on both sides of the neck were involved and because my collarbone lymph nodes were involved. Moreover, my NJ oncologist told me he had no clue where the primary was located and that no further testing or pathology study would reveal its location.

The Dr. at Sloan Kettering had a completely different take on my situation. He recommended more pathology study and scoping in my neck in an effort to locate the primary. Further, he thinks that my primary is most probably in my neck and expects that I will be treated with a radiation and chemo regimen designed to cure neck cancer even if the primary can't be located. He disagreed with the conclusions of my NJ doctors as he said that neck cancer can present on both sides of the neck and can spread to the shoulder lymph nodes from the upper neck. I had confidence in his opinions as he is a co-author of a chapter on neck cancer contained in an oncology textbook. The chapter includes a section on treating unknown primary tumors in the neck. Finally, he said my case will be reviewed by a team of doctors and I am meeting next week with a radiation oncologist and a medical oncologist. My wife and I left Sloan feeling great as we believe that no matter how things turn out, I am getting the best care. I am now a believer in 2nd opinions

Could you please tell me how involved your Dad's lymph nodes were and how difficult it was for him going through both radiation and chemo. I told the Dr that I would withstand anything that might help as I still have small children (7, 9, 12).

Paul

Paul,

I just wanted to let you know that I've been following your story and I am thrilled at your good news. Chemo will be tough, but there are good new medications to keep the worst symptoms at bay. I think that radiation in the neck is VERY difficult, symptom-wise - dry mouth, strictures, mucus... etc. However, as unpleasant as the treatment is, neck cancers are very cureable and you obviously have so much to live.

I am going to remember your situation as an example of the importance of a second opinion. Thank you so much.

mnemosyne, thank you so much for your support. My wife and I are hoping for the best and feel our hope is well placed with the doctors at Sloan.

Paul,
Good for you for getting a second opinion.Sloan is supposed to be one of the best!I have a friend who had a swollen node in her neck. Unknown primary. She had rad. & chemo and is now 3months out & cancer free!Knowing 2 people who had rad.in the throat area, my advice is to bulk up if you need to and try to save your salivary glands if possible. Good luck to you, it sounds like you are in good hands now!God bless!

After all the additional pathology tests and procedures were performed by Sloan Kettering, they now agree with my first Dr. stating that I have an unknown primary tumor with metastic spread to the cervical lymph nodes. They were able to tell me that the primary is probably in the GI tract as it is an adenocarcinoma and not squamous. There is no presently no cure but there is a reasonble chance that my cancer will respond to a taxol/carboplatin treatment regimen and perhaps extend my life for several years. Most folks die within 12 months of diagnosis. I will no more after three cycles of treatment. Predictive factors favoring a positive response are the fact that my cancer has only spread to the lymph nodes and my age (51). I'm hoping for the best. Keep me in your prayers.

bball3dad,
I too was treated with the taxol/carboplatin regimen. And, although my case was somewhat different from yours (left inguinal node, poorly differentiated cells, similarities to both squamous and small cell cancers), I am still cancer-free nearly four years after completing treatment. (Oh yes, I also had radiation to the area where the tumor was excised). Hopefully your response will be equally as good to this chemo regimen.

If you've got any questions re the chemo, do post back and I'll be happy to share my experience with it.

Ruth

I started chemotherapy on Sept. 12th. Fortunately, it hasn't been too bad. Mostly some headaches from the steroids which I need for the taxol. The left side of my neck which has been very tight (that is where the swollen lymph nodes are) has softened up considerably. I'm hoping that's a sign the chemo is working. I see the Dr. on the 26th. Pray for me.

Dear bball3dad;
I am praying for you and your family, hoping you are responding to your current treatment. Your youth IS on your side.

bball3dad,
How are you doing? Your doctor's appointment is coming up next Monday. Please be sure to post and let us know what's going on. You will be in my prayers, too.

Ruth

bball dad, Hope all is going ok with the chemo treatments. My friend Gary,
is going through something similar. He a had a baseball size tumor in his
neck and after a biopsy was confirmed to be cancer. He was also told no
primary could be found after having a pet scan. His first doctor was full of
gloom and he got a new doctor giving him much more hope. He started his
chemo a few days ago and is feeling pretty good. My thoughts are with
you and please update when you can.
Baylee

Thanks everyone for your concern and prayers. I stared chemo three weeks ago. I'm happy that I had very little side effects from the first chemo. Also the tightness in the leftside of my neck went down after the chem kicked in. The Dr. told me that was good news. I have my second treatment tomorrow, 10/3. Please pray for me.

You're in my prayers, bballdad. Would you kindly return the favor? I just got diagnosed Friday with bladder cancer and, no, it is not a reoccurrence of the CUP...it's a totally different type of cancer than I had before. Luckily, it was non-invasive. Urologist says all I need is follow up cystoscopies, but I have to call him back as I've got tons of questions.

Never a dull moment, is there?

Ruth

Ruth,

You are now in my daily prayers. I was able to find your posts from 4 years ago when you first posted your diagnosis on these boards. I've been inspired by your story as you have beaten the odds. Only a fairly small percentage survive CUP after 4 years. Keep us posted on the latest developments. I had my second round of chemo today. It went well.

Paul

Bball3dad,

I am glad to hear that you received a second opinion from a premiere clinic like Sloan Ketering. However, I did want you to be aware of a 3rd option. My mother is currently battling CUP. She is receiving treatment at the Sarah Cannon Institute in Nashville TN via clinical trial. There are two premier doctors there who specialize in CUP. (Grecco & Hainesworth) So far, my Mother is responding favorably to the treatment. I wanted you as well as anyone else battling this rare cancer to be aware of this. As far as what you find on the web regarding CUP, please realize that alot of the info. is old and that advancements are taking place to battle this cancer. MY MOTHER IS PROOF OF THIS!

GOD Bless you and your family!

Mike :angel:

Hi Paul.
Isn't it ironic that just two weeks before I would have celebrated my 4th year cancer-free from CUP, I got diagnosed with bladder cancer? But hey...I'm still surviving CUP!

You'll probably do a follow-up CT scan after your 3rd chemo treatment, which will give you a good indication of how things are going. I'm glad you're doing well with the chemo...I can't believe some of the horror stories I've been hearing about doctors who do not treat prophylactically for nausea but rather wait until the patient gets sick and then give them pills. No one should have to get sick from chemo these days.

I'm now in the process of trying to find a new urologist, as the one who did my surgery is going to be history any day now. He's not forthcoming, has spent less than 12 minutes with me altogether in 3 visits, including surgery, and a phone call, and is very dismissive of my questions. Luckily, I saw my regular oncologist last week, and he gave me some good advice and a referral to a urologist. Wish he could treat me for the bladder cancer but, unfortunately, it definitely needs a urologist.

I will keep you in my prayers too, Paul...and I appreciate yours for me. I probably am going to need more treatment, and will let you know what happens. My spirits are good, though and as my Mom said when she was diagnosed at age 62 with 3rd stage breast cancer, "I'm not ready to go yet and, damn it, I'm not going!" At least not for another several years! My goal now is to outlive my cats, and the youngest is only 9, so I intend to get in at least another 7 or 8 years. If God grants me more, I won't quibble with Him!

Ruth

Thank you Ruth and Mike for your posts. I had my 3rd chemo regimen done on Monday, 10/24. Cat scans will be done next week to determine if there has been a response. We are all praying that the chemo is working. Mike, I am undergoing the treatment plan recommended by Greco and Hainsworth. Please keep me in your prayers.

Love and peace,
Paul

Paul,
I'll send up a prayer for good results on your CT's.

Mike - back when I was very active on another CUP support board, Dr. Greco was recommended by many, many people. Your mother is in good hands, indeed. I wish you both continued success with her battle against CUP.

Ruth

The Ct scans after my first three scans show that all of the swollen lymph nodes save one are shrinking and that no new lesions developed. My oncologist says its great news. I'm a little less optimistic as I was hoping for at least a 50% reduction (partial response) and perhaps a complete response. In fact one node in my neck got a little bigger, but my oncologist pointed out that the treatment did not start until over two months after the first scans were done so that it may have shrunk after getting larger. The radiologist report did not give measurements so it is hard to determine the extent of the shrinkage. My oncologist pointed out that in over 50% of the UPT cancer cases the taxol/carboplatin treatment, which is considered the most effective does not work so I'm thankful there has been some progress.

Ruth, haw much shrinkage did you have after the first 3 teatments.

Thanks,
Paul

Hi Paul,
I've been watching the board hoping you would post on your results. I think that's quite good news. You will probably need more treatments than I had, as our cancers are somewhat different. Mine was not adenocarcinoma, which I believe yours is? The fact that it IS responding to treatment is excellent.

I had a total of four treatments, by the end of which my cancer was undetectable on the CT scan. However, it should be noted that a) I only had it in one location and b) most of it (although not all) was removed through surgery prior to starting the chemo.
Following the chemo, I also had radiation to the area where the tumor had been.

Has anyone discussed possible surgery if they can shrink the tumors enough? What about radiation? Sometimes it takes a multi-disciplinary approach to knock out cancer, although one always has to weight the risks of each treatment versus the potential benefits.

At any rate, Paul, it sounds like you're doing quite well, which is definitely something to celebrate. God willing, the tumors will keep shrinking! Please keep us posted on your progress, and I will keep you in my prayers.

Ruth

Hi Ruth & Paul,

Sorry for the delay. I have kept you both in my prayers. Paul, so glad to hear that you are responding to treatment! Like you, my Mother just got the results back from her 2nd body scan. Her first result from an 8 week treatment showed a 19% reduction in Cancer. Her second result showed no change. I don't know how to interpret this, I wish it was a change for the better, but I will just be thankful that it is not a change for the worse. Doctor reccommended staying on current treatment. My Mother agreed. Her situation is CUP in various parts of her body (Liver, Lung, Bone)which I know is serious, but then again, when battling any Cancer, when is it not?? Our family has had a strong faith, it has certainly been tested, we just keep moving forward.

Prayers for you both,

Mike

Mike,
When was her second scan done, and what treatment was she on between the time of the post-8-week scan and the second scan?

Sometimes a cancer can become resistant to a treatment, and then it's definitely time to try something new. On the other hand, if the scans were done quite close together, it's just possible that it was too soon to see any further reduction.

At any rate, your Mom will be in my prayers, too, and I appreciate yours for us.

Ruth

Mike and Ruth

Thanks for your support and prayers. I am going to have a second set of scans done after my sixth course of treatment. I also want to get a PET SCan done as I am concerned that my cancer may be progressing even though many cancerous lymph nodes are shrinking. For example, my chest scan showed a swollen lymph node of 1.1 cm in my right armpit, which wasn't there before treatment started. My doctor believes it's not cancerous and just very mildly swollwen and therefore recommended that I continue the taxol/carboplatin treatment. However, he conceded that if it was cancerous then a new treatment regimen should be started. Also my Dr. in NJ indicated that treatment was effective even if there was no shrinkage as long as there was no inrease in size, a condition called "stable". However, my oncologist at Sloan Kettering disagreeed and told me that in UPT a stable condition is not good news.

Ruth, how are you doing, please keep us posted.

Thanks,
Paul

Hi Paul,
I think you're very wise to take an active role in your treatment and a PET scan may give you some more information.

I'm not clear on something...is your doctor in NJ an oncologist too? Where are you getting your chemo treatments? And what does the doctor at Sloane Kettering recommend you do, in terms of determing if, in fact, the swollen node under your arm is or is not cancerous? Might it be worth having it surgically removed and biopsied? Let us know what happens next.

As for me, I have, apparently, dodged another bullet. I got a second opinion which agreed with the first one...no further treatment needed at this time, just very close surveillance, which means cystoscopies every 3 months for at least a year, then every 6 months, then once a year. I am going for yet a third opinion this coming Tuesday, but mostly because I didn't like the first doctor and need to find another urologist for the follow-up cysto's, as the 2nd opinion doctor is part of a cancer treatment center and won't do the routine cysto's. The third doctor is local and was recommended by my oncologist, and he will probably be the one to do all the follow-up.

I imagine this is going to be a difficult holiday for you, Paul, but do try to stay in the day and enjoy. There is always, unfortunately, plenty of time to worry, but sometimes we miss the joys we do have while we're worrying about what might happen tomorrow. I've done that myself, although I try very hard not to do that anymore. The 12-step program slogan "One Day At A Time" is something we should all take to heart!

Ruth

Ruth

Thanks for your post. I'm a practicing Catholic who prays every day and is thankful for everything the Lord has given me. The Lord gives us today but does not promise us tomorrow. I haven't let this cancer bring me despair. I try to stay away from the pity parties. My family is having a great day today. I hope you enjoy the day. The medical oncologist at Sloan basically sent me back to my NJ doctor who is an oncologist and first diagnosed me with UPT. I haven't gone back to Sloan since he sent me back to NJ for treatment. My NJ doctor says we'll do a Pet Scan after treatment 6.

Paul

Hi Paul & Ruth,

I hope you both had a great Thanksgiving! I think you would both agree that the medical community can at times be quite frustrating. Difference of opinions, difference of recommendation, trying to gauge what the Doctor is thinking? Ughhh...!! Ruth, I wanted to relay what my Mom is taking. She currently receives a drug called Avastin via I.V. every 2 weeks at Sarah Cannon, along with a daily pill called Tarseva (spelling?). She has treatment cycles that go for 8 weeks followed up by a body scan to see status of Cancer at end of 8 week period. I am curious what areas of your body were affected when you battled CUP, and what the treatment was for you. Are there any other sources of information that you found were helpful? Paul, admire your positive attitude, it is so key for restoring health. Still working on my Mom to do the same.

Thankful for today, praying for tomorrow.

Mike

Hi Mike,
My tumor was a left inguinal (groin) node, it was poorly differentiated (meaning the cells did not look exactly like any cells that should be found there), and had similarities to both squamous and small cell cancers. I've since found out that CUP in the inguinal nodes is the "best" kind of CUP to have.

My treatment surgery first, where they excised as much of the tumor as they could, but left about 1/3, since the cancer was adhering to arteries and veins and I would have lost my leg if they tried to remove it all. That was followed by four cycles of carboplatin/taxol (it was originally supposed to be 6 cycles, but all the remaining cancer had disappeared after 4 cycles), and that was followed by 5 weeks of daily radiation therapy. So far, it has been four years and two months since I finished all treatment.

I believe the treatment for CUP varies greatly, depending on what type of cancerous cells they find and where. My treatment was based on the similarities to both squamous and small cell, so my oncologist picked chemos that work for both of those types of cancer.

I agree with you both, Paul and Mike, that attitude makes a HUGE difference. I truly believe it can even have an effect on how well treatment works, but for sure it affects our daily existence, and I would just hate to squander any good days by spending them feeling sorry for myself. To have a few moments of sadness, fear, anger, etc., is just being human, but I'm with you, Paul...I don't do pity parties!

Thanksgiving was a wondeful day, spent with family. I hope you both had equally good Thanksgivings, and that we all have many more of them!

Ruth

I will be 23 in January and have had cancer three times, one of which was lymphoma, although the lymphoma I had was Non-Hodgkin's Lymphoma. I did 18 months of chemotherapy along with some radiation and haven't had lymphoma since. Good Luck!

Aww, Cardshark...no one should have to go through all that at such a young age! Still, I'm very glad you made it through! How long has it been since you finished treatment?

Ruth

Heres an update:

In mid November I had a chest and neck Cat scan performed to evaluate the first three Taxol/Carboplatin treatments. They indicated some shrinkage of my neck and left armpit lymph nodes and my oncologist said that was good news. He ordered three more treatment regimens. However,after two treatments, my neck tightened up and the pain became severe. I was put on Oxycontin (40 mg tabs, 2x per day)to manage the pain. The doctor foregoed the third treatment and ordered Cat scans of my pelvis, abdomen, chest and neck and a full body PET Scan. The scans reflected that the cancer had spread to a lymph node in my right armpit, to several more lymph nodes in my neck and that the infected lymph nodes were getting more swollen. I was of course very disappointed. I am now on weekly chemo treatment of Navelbine. My neck isn't as tight so I am hopeful that's a sign that the chemo is working. I'll be re-scanned in April. I recently saw another oncologist for a 2nd opinion and although he agreed with the course of treatment, I liked the way he explained my situation better than my present oncologist so I'm going to change doctors. Please keep praying for me.

Paul

Paul,
I'm so sorry to hear that the taxol/carboplatin didn't keep the cancer in check, but hope that the Navelbine will continue to work for you, and will keep you in my thoughts and prayers.

Ruth

to Ruth and Mike and all who gave hope and prayers to my husband Paul,
I found this thread while I was going thru his sites. Paul passed away on March 28,2006. In mid-March we found that the cancer had spread to his brain and two weeks later he was gone. Thank you all for your encouragement and support. It meant alot to both of us. God bless you.
Trina

Trina,
I am so very sorry to hear this sad news. Paul had a lot of courage and will to fight and, of course, one hopes that the beast can be tamed, but unfortunately such is not always the case.

My deepest condolences to you and your family on your loss.

Ruth

Trina,

I am so very sorry for your loss. I too, lost my Mother on 2/8/06 to CUP. I thought about posting this news when it happened, but I did not want Paul to read something discouraging while engaged in his brave fight!

Again, I am so sorry. I hope you and family will find peace and comfort during this most difficult time.


Mike

Hi Mike,
I'm sorry to hear that your mother, too, lost the battle to this awful disease. My sincere condolences to you and your family.

Ruth

SamQkitty,

I too have been diagnosed with Squamous cell carcinoma in my left inguinal lymph nodes. I go tomorrow to a GYN-Oncologist for an exam to see if he can find the primary site.

Please read my thread under cancer-lymphoma..and let me know what you think...

I don't know any other way to contact you. :)
Thanks!

DJW,
Believe it or not, that is actually one of the best kinds of CUP to have...highly treatable, whether they find the primary or not. You'll probably need chemo, and then also radiation to the area, but iguinal node CUP is the most curable of all the CUP's you could have.

I'll look at your post under lymphoma later on, but wanted to give you some hope right away.

Ruth

First, let me express my deepest condolences to Paul and Mike's family.

I am currently in treatment for colorectal cancer, so I can understand somewhat what your battle has been.

The question I have is in regards to my brother. He just had 2 fine needle biopsies for swollen lymph nodes in his neck. The ENT told him that he had squamous cells in his lymph nodes and they were going to run additional tests on the samples they took. They also did a scope of some sort.

Any idea what this means? We are in the middle of a waiting game here, which, as you know is torture! He will meet w/the ENT again on July 6. Any info you have is appreciated.

Thanks!

Trina & Mike,

I am so sorry for your loss... My dad has just been dx with CUP and I'm looking for any and all information I can get my hands on. I'll be posting on another thread in hopes to hear from others going through the same.

Lynn

GoCatsGo and DJW,
What's the latest with you two? Any more news? Please post and let me know what's going on with each of you...I'm hoping things are progressing well...although I do realize that "well" is a very relative word when it comes to cancer!

Ruth

SamQKitty,

I started a new thread on my CUP. Please find it in the Cancer section of Health issues.

I was so saddened to read about BBALL3DAD... (((Paul))) :(
He was fighting this so well.

Please read my post - I'd like your input!

Thanks for asking for an update.

It has been a month, but my brother was just diagnosed this week with squamous cell carcinoma of the tonsils. We are just so floored. He will go on Tuesday to find out how bad it is... I guess he will have radiation and chemo?? Just waiting and wondering.

My poor mom. She is dealing w/taking care of my kids - I am in the hospital after a terrible scare last week. I had a blockage after just being home a few days from ileostomy reversal surgery. I was so sick! I had to be taken by ambulance as I went into some metobolic reaction that lookd like I was having a stroke. (clenched hands, legs, slurred speech...) I am still here unable to eat or drink anything. I am on TPN and will hopefully go home Tuesday.

Anyone have any experience w/tonsil cancer? He is a non smoker, only drinks socially...any stories of hope? I would not wish cancer on anyone, nevermind my big brother. I can't belive my family has to go through with this all over again. I am hoping his prognosis is very good.

Thanks and take care,
Cats

Oh, Cats...how terrible for you and your family. I have never heard of cancer of the tonsils, but...if it's squamous cell it may respond very well to taxol/carboplatin or other chemo. And maybe they can actually remove it all surgically without his needing chemo?

And you...I'm sorry to hear that you had such a scare. Did something go wrong with the reversal surgery, or was it just a case of things not "moving" again as quickly as they might have thought? Are you still on TPN, and how long are you going to have to stay on it? It must be frustrating not to be able to even drink something if you're thirsty, but TPN is excellent at keeping your body well-nourished and hydrated. In fact, it's much better than PN (feeding tube) in my opinion, especially if you need to be on it for more than a day or two. It will give your body the full nutrition it needs to stay strong and keep on healing. Still, I hope you'll be able to start eating normally soon.

Ruth