1st Oncologist Vist
I go back to the oncologist on Aug 1. Everything that was discussed today was overwhelming and as the oncologist said today she will know more with the next PET scan results. Any information will be greatly appreciated.
Comments
-
Tough times
I can't speak about how things are done in the US but here in Australia, any head and neck cancer is referred to a team of specialists. For me, after the MRI and biopsy was taken, I was diagnosed with Stage IV NPC and sent for a PET scan. I then came back and met the head and neck cancer team which consisted of specialists such as ENT, Opthamologist, neurological, radiation oncologist, medical oncologist, facial surgeon, dentist and a few others. Each member of the team does an assessment on me, reviews the scans and then meets back as a team to agree on treatment.
The PET scan will be able to tell if your cancer has metastised or not (if it is has spread to any other parts of your body). All this will be a bit overwhelming as it is for everyone, but I have to say, you have come to the right place as you will find a lot of support on this forum. There a lot of good people on here that can help you through the tough times ahead.
As I type, I am currently receiving my 3rd round of chemo (cisplatin and 5FU) and have just started radiation treatment. I was diagnosed in mid May and the first few weeks were an absolute whirlwind. Things are now just starting to fall into place and now starting to get into a routine. Just keep reminding yourself that all this is for a good reason, stay positive and try not to get too stressed. I hope this helps.
Adrian0 -
Welcome Osmotaradrian b said:Tough times
I can't speak about how things are done in the US but here in Australia, any head and neck cancer is referred to a team of specialists. For me, after the MRI and biopsy was taken, I was diagnosed with Stage IV NPC and sent for a PET scan. I then came back and met the head and neck cancer team which consisted of specialists such as ENT, Opthamologist, neurological, radiation oncologist, medical oncologist, facial surgeon, dentist and a few others. Each member of the team does an assessment on me, reviews the scans and then meets back as a team to agree on treatment.
The PET scan will be able to tell if your cancer has metastised or not (if it is has spread to any other parts of your body). All this will be a bit overwhelming as it is for everyone, but I have to say, you have come to the right place as you will find a lot of support on this forum. There a lot of good people on here that can help you through the tough times ahead.
As I type, I am currently receiving my 3rd round of chemo (cisplatin and 5FU) and have just started radiation treatment. I was diagnosed in mid May and the first few weeks were an absolute whirlwind. Things are now just starting to fall into place and now starting to get into a routine. Just keep reminding yourself that all this is for a good reason, stay positive and try not to get too stressed. I hope this helps.
Adrian
I hate to say welcome, but that is what I mean. This site will help you with all your questions and also what questions to ask your Dr's.
The word cancer is a scary one. Your heart stops and then everything slows down to a crawl. I remember being so frightened that I wanted to start treatment immediately. My doctors assured me that a couple weeks of planning and preparing would not hurt my treatment. I had 36 Rads with 5 cisplatin (chemo) treatments. It is a harsh treatment, but it is a good one. This cancer can be cured and by all of us here on the site is proof of that.
So gear up and get ready to fight and get through all this scary stuff. We have many here who had the same diagnosis as you and others with similar ones. It's all head and neck cancer and much of it is treated with the same protocol. My dr's told me it is not a bad cancer, it's just in a bad spot to treat.
Be positive, ask questions, stay active and most of all get enough nourishment during the next few weeks.
You'll be alright. Just have patience and you'll see this through...
All the best0 -
Informationadrian b said:Tough times
I can't speak about how things are done in the US but here in Australia, any head and neck cancer is referred to a team of specialists. For me, after the MRI and biopsy was taken, I was diagnosed with Stage IV NPC and sent for a PET scan. I then came back and met the head and neck cancer team which consisted of specialists such as ENT, Opthamologist, neurological, radiation oncologist, medical oncologist, facial surgeon, dentist and a few others. Each member of the team does an assessment on me, reviews the scans and then meets back as a team to agree on treatment.
The PET scan will be able to tell if your cancer has metastised or not (if it is has spread to any other parts of your body). All this will be a bit overwhelming as it is for everyone, but I have to say, you have come to the right place as you will find a lot of support on this forum. There a lot of good people on here that can help you through the tough times ahead.
As I type, I am currently receiving my 3rd round of chemo (cisplatin and 5FU) and have just started radiation treatment. I was diagnosed in mid May and the first few weeks were an absolute whirlwind. Things are now just starting to fall into place and now starting to get into a routine. Just keep reminding yourself that all this is for a good reason, stay positive and try not to get too stressed. I hope this helps.
Adrian
Thank you Adrian....the first PET didn't show the cancer anywhere elses, but since is almost 2 months old ( from my ENT) the oncologist wants a new one. Will try to take it a day at a time.
Linda0 -
Thsnks for the welcomehawk711 said:Welcome Osmotar
I hate to say welcome, but that is what I mean. This site will help you with all your questions and also what questions to ask your Dr's.
The word cancer is a scary one. Your heart stops and then everything slows down to a crawl. I remember being so frightened that I wanted to start treatment immediately. My doctors assured me that a couple weeks of planning and preparing would not hurt my treatment. I had 36 Rads with 5 cisplatin (chemo) treatments. It is a harsh treatment, but it is a good one. This cancer can be cured and by all of us here on the site is proof of that.
So gear up and get ready to fight and get through all this scary stuff. We have many here who had the same diagnosis as you and others with similar ones. It's all head and neck cancer and much of it is treated with the same protocol. My dr's told me it is not a bad cancer, it's just in a bad spot to treat.
Be positive, ask questions, stay active and most of all get enough nourishment during the next few weeks.
You'll be alright. Just have patience and you'll see this through...
All the best
Scary yes, scared somewhat, but my family and friends , even co-workers are a great support group.
Linda0 -
gather your information
all of it is there for the taking. get the DVD/written report from the PET. Get the written report of the biopsy of the removed tonsil/lab results. There will be a ton of information contained within as to the stage/ grade/ type of cancer. Is the right tonsil the primary site with spread to the right cervical node? What is the size of the spread? Your treatment plan sounds standard and on target. What type of chemo will they be using? I assume Cisplatin and 5FU? If you ask it's all there for the taking and perfectly within your rights. Ask the oncologist for your diagnosis in the standardized cancer format of letters and numbers. Then explore those identifiers. Don't be shy and good luck with your journey and welcome to the site.0 -
Welcome
Your diagnosis and treatment plan is identical to mine in January 2009. STGIII SCC HPV+ Right Tonsil (primary) and a single lymphnode (secondary) that popped up on that same side....
Tonsils came out
Nine Weeks Chemo Three week cycles of Cisplatin, Taxotere and 5FU (in a pump for five days)
Seven Week of concurrent chemo/rads (Carboplatin weekly, rads 35 daily).
The lymphnode was left alone instead of a neck dissection to see what effect the chemo/rads would have on it. In my case it completely dissolved away.
All CT and PET scans have been clean to date....
If you need any additional information, look at my bio, PM me or ask on here....
Welcome aboard, there is a huge knowledge base from survivors and awesome people here....
Thoughts and Prayers,
John0 -
WELCOME
Skiff, Rat and Hawk said it best.
There is a wealth of knowledge, and always someone ready to listen when you need to vent. Do not keep the "stuff" bottled up inside, here is a good place to release it.
I wish you the best and trust me, it will all get better and make more sense as time goes on.
Mike0 -
Welcome (I guess) to a place you hoped never to beluv4lacrosse said:WELCOME
Skiff, Rat and Hawk said it best.
There is a wealth of knowledge, and always someone ready to listen when you need to vent. Do not keep the "stuff" bottled up inside, here is a good place to release it.
I wish you the best and trust me, it will all get better and make more sense as time goes on.
Mike
The good thing is that this is very treatable so have confidence in that. The bad thing is that even if you are lucky in your treatment and get off lightly, it is going to be hard.
What you need to find are the Superthread and the 35 questions. (Perhaps we should include these in the Superthread, eh?) The questions tell you pretty much all that you should ask your doctors and the Thread has links to the discussions about everyone's experiences with everything from neck burn to nausea and dissections to disability. The collective wisdom as it were.
And, as others said, just talk to us about your hopes and your fears. We have all had these. Also, encourage your caregiver to get on the Caregiver side. This was a lifeline to my wife who probably suffered more during this than I did and who was truly heroic. Me, I just had to put up with the treatment. Doug0 -
ThanksGoalie said:Welcome (I guess) to a place you hoped never to be
The good thing is that this is very treatable so have confidence in that. The bad thing is that even if you are lucky in your treatment and get off lightly, it is going to be hard.
What you need to find are the Superthread and the 35 questions. (Perhaps we should include these in the Superthread, eh?) The questions tell you pretty much all that you should ask your doctors and the Thread has links to the discussions about everyone's experiences with everything from neck burn to nausea and dissections to disability. The collective wisdom as it were.
And, as others said, just talk to us about your hopes and your fears. We have all had these. Also, encourage your caregiver to get on the Caregiver side. This was a lifeline to my wife who probably suffered more during this than I did and who was truly heroic. Me, I just had to put up with the treatment. Doug
Thanks everyone for the kind words of encourgement, I think the most difficult time right now is the issues my family are having with this news, they are 2500 miles away and they feel helpless. I just received a call from my oncology office, I'm going this friday to have the chemo port place, I hate needles, please someone tell me this is just a minor blip in the whole process.0 -
Needlesosmotar said:Thanks
Thanks everyone for the kind words of encourgement, I think the most difficult time right now is the issues my family are having with this news, they are 2500 miles away and they feel helpless. I just received a call from my oncology office, I'm going this friday to have the chemo port place, I hate needles, please someone tell me this is just a minor blip in the whole process.
Doug was not fond of them before, but he seemed to get used to them during treatment. He did not have the chemo port, but I understand this is not a big deal. In fact, it is meant to make future injections easier, as they will not have to "find" a vein (the port will be a direct connection). I think Doug would have liked to have one, since he was going 3x a week for IV saline infusion to treat dehydration, and they put a new IV in his arm each time.
Talk to your doctor about antianxiety drugs, such as Ativan. It can help at times like this, both for you and your caregivers.0 -
Portosmotar said:Thanks
Thanks everyone for the kind words of encourgement, I think the most difficult time right now is the issues my family are having with this news, they are 2500 miles away and they feel helpless. I just received a call from my oncology office, I'm going this friday to have the chemo port place, I hate needles, please someone tell me this is just a minor blip in the whole process.
The port's not that big of a deal....
They do put you under as an outpatient to insert it (or did me anyways)....
Here's a photo, 2 1/2 years since they put it in, should be getting it out in a month or so.
Power Port
You can barely see the scar and shadow next to the heart shaped freckle, t's a small quarter sized bump.
The port makes it easier for the chemo as they can use a pump and infuse it faster than the standard IV.
It's used for hydration and they can draw blood also through it...power port works both ways injecting/drawing...
You just have to get it flushed every 6 - 8 weeks after treatment..which they do each time the access it.
The pin that they insert in it for chemo stings pretty good for a minute or so, but then you don't feel it.
Nice thing on the port, nothing hanging out, it's all under the skin. So when you're done, they flush it, stick a bandaid on it and you're good to go.
Best,
John0 -
35 questionsGoalie said:Welcome (I guess) to a place you hoped never to be
The good thing is that this is very treatable so have confidence in that. The bad thing is that even if you are lucky in your treatment and get off lightly, it is going to be hard.
What you need to find are the Superthread and the 35 questions. (Perhaps we should include these in the Superthread, eh?) The questions tell you pretty much all that you should ask your doctors and the Thread has links to the discussions about everyone's experiences with everything from neck burn to nausea and dissections to disability. The collective wisdom as it were.
And, as others said, just talk to us about your hopes and your fears. We have all had these. Also, encourage your caregiver to get on the Caregiver side. This was a lifeline to my wife who probably suffered more during this than I did and who was truly heroic. Me, I just had to put up with the treatment. Doug
Doug, if you mean the questions for your doctor that I think was on a thread by daddy'sgirl, it is already on the superthread.
To osmotar its toward the bottom under contributions from other members, I believe. I highly encourage you to take time to look through the links there, it is filled with answers to a lot of issues relating to treatment. Welcome to CSN.0 -
1st Oncologist visit memories
I'm 25 months to the far side of treatment for stage 4 left tonsil cancer, and I'll never forget my first visit to the Chemo Oncologist. While my wife and I were truly anxious to get on with the treatment, time and appointments went so slowly. Sitting in the Ocologist's examining room here in Baton Rouge, LA., I noted his diplomas and certifications, and I then informed my wife that "this isn't going to work". The dude had his medical degree from Vanderbilt, and my wife and I have our degrees from the University of Tennessee in Knoxville. Kinda like oil and water....no way they'll mix. He then arrives in the room and begins his interrogation about me, and we find out we are the same age...and grew up in the same city (Nashville)....and went to totally opposite, all male hard-core rival high schools there. Matched up against each other twice in the city basketball championships, and in fact, dated the same girl for a short while. We eventually got down to the biz at hand, and he had already set me up for a Power-port and Peg Tube insertion, and had the treatment protocol pretty much set up contingent upon any dental problems (which I had to have a wisdom tooth extracted...week setback). After two rounds of Cisplatnin, one round of Taxtera, and two weeks of the ole fanny pack pumping in the 5FU......the Tumor had basically disolved. Reminding me how he blocked a shot of mine 45 years ago, he jabbed me with the comment, "only a guy from your High School would have a wimpy tumor like that". I only have to see him once a year now till either I kick the bucket or he retires, but he made me promise to bring him a six pack of his favorite brew at the time of the appointment. I gladly do it, even though we continued to finish out 4 more rounds of chemo and 36 rads. Ironically, we now only live 3 blocks from each other. Tis a small world indeed.
Larry0 -
Thanks again, for the portCajunEagle said:1st Oncologist visit memories
I'm 25 months to the far side of treatment for stage 4 left tonsil cancer, and I'll never forget my first visit to the Chemo Oncologist. While my wife and I were truly anxious to get on with the treatment, time and appointments went so slowly. Sitting in the Ocologist's examining room here in Baton Rouge, LA., I noted his diplomas and certifications, and I then informed my wife that "this isn't going to work". The dude had his medical degree from Vanderbilt, and my wife and I have our degrees from the University of Tennessee in Knoxville. Kinda like oil and water....no way they'll mix. He then arrives in the room and begins his interrogation about me, and we find out we are the same age...and grew up in the same city (Nashville)....and went to totally opposite, all male hard-core rival high schools there. Matched up against each other twice in the city basketball championships, and in fact, dated the same girl for a short while. We eventually got down to the biz at hand, and he had already set me up for a Power-port and Peg Tube insertion, and had the treatment protocol pretty much set up contingent upon any dental problems (which I had to have a wisdom tooth extracted...week setback). After two rounds of Cisplatnin, one round of Taxtera, and two weeks of the ole fanny pack pumping in the 5FU......the Tumor had basically disolved. Reminding me how he blocked a shot of mine 45 years ago, he jabbed me with the comment, "only a guy from your High School would have a wimpy tumor like that". I only have to see him once a year now till either I kick the bucket or he retires, but he made me promise to bring him a six pack of his favorite brew at the time of the appointment. I gladly do it, even though we continued to finish out 4 more rounds of chemo and 36 rads. Ironically, we now only live 3 blocks from each other. Tis a small world indeed.
Larry
Thanks again, for the port info, all in all it's probably for the best I have small veins that roll..so anything that eliminates sticks works for me. What I like about my onco was that during the conversation, apparently she could she that deer in the headlight look in my eyes, she put her arm around my shoulder and said Linda , I know that this is a lot of sh*t to take in at once, right then I immediatley liked her. My daughter wants to know if the doc office has WiFi, since she is in Maryland , I'm in AZ, she told me I should tell the doc we should skype my office visits.0 -
Informationsweetblood22 said:35 questions
Doug, if you mean the questions for your doctor that I think was on a thread by daddy'sgirl, it is already on the superthread.
To osmotar its toward the bottom under contributions from other members, I believe. I highly encourage you to take time to look through the links there, it is filled with answers to a lot of issues relating to treatment. Welcome to CSN.
I didn't or should say haven't found the contributions from other members that you referenced...ps thanks for the welcome0 -
Not sure what type of chemoratface said:gather your information
all of it is there for the taking. get the DVD/written report from the PET. Get the written report of the biopsy of the removed tonsil/lab results. There will be a ton of information contained within as to the stage/ grade/ type of cancer. Is the right tonsil the primary site with spread to the right cervical node? What is the size of the spread? Your treatment plan sounds standard and on target. What type of chemo will they be using? I assume Cisplatin and 5FU? If you ask it's all there for the taking and perfectly within your rights. Ask the oncologist for your diagnosis in the standardized cancer format of letters and numbers. Then explore those identifiers. Don't be shy and good luck with your journey and welcome to the site.
Not sure what type of chemo ....will probably get all the info on Aug 1st at next visit0 -
HNC Superthread. **EXCELLENT FOR PEOPLE NEW TO CSN**........osmotar said:Information
I didn't or should say haven't found the contributions from other members that you referenced...ps thanks for the welcome
A collection of links with answers to frequently asked questions.
Sorry about that. My head is so muddled, that nothing I said up there was clear. Here is the direct link for the superthread. I usually do not link directly to it, because if it needs updated, or if someone posts to it, I delete the whole thread and repost a new one, so if I have to delete it, this link will no longer work. Just in case that happens, I do always keep it topped on the first page of this board, for easy access.
HEAD AND NECK CANCER SUPERTHREAD
Sweets0 -
You stated that yourosmotar said:Thanks again, for the port
Thanks again, for the port info, all in all it's probably for the best I have small veins that roll..so anything that eliminates sticks works for me. What I like about my onco was that during the conversation, apparently she could she that deer in the headlight look in my eyes, she put her arm around my shoulder and said Linda , I know that this is a lot of sh*t to take in at once, right then I immediatley liked her. My daughter wants to know if the doc office has WiFi, since she is in Maryland , I'm in AZ, she told me I should tell the doc we should skype my office visits.
You stated that your family is far away. Do you have someone close to help you with the paperwork and scheduling? Sweetblood had to do it alone and I know it must have been stressful for her. Jim says he could not handle the treatment if I wasn't here to handle everything else. We too were anxtious to get started with treatment. Eventually everything will settle into a routine so hang in there. I had many concerns and questions [still do] and the great people on this site really helped and supported us and still do. Welcome! Contact me any time. I am praying for you.
Blessings
Debbie0 -
You stated that yourosmotar said:Thanks again, for the port
Thanks again, for the port info, all in all it's probably for the best I have small veins that roll..so anything that eliminates sticks works for me. What I like about my onco was that during the conversation, apparently she could she that deer in the headlight look in my eyes, she put her arm around my shoulder and said Linda , I know that this is a lot of sh*t to take in at once, right then I immediatley liked her. My daughter wants to know if the doc office has WiFi, since she is in Maryland , I'm in AZ, she told me I should tell the doc we should skype my office visits.
You stated that your family is far away. Do you have someone close to help you with the paperwork and scheduling? Sweetblood had to do it alone and I know it must have been stressful for her. Jim says he could not handle the treatment if I wasn't here to handle everything else. We too were anxtious to get started with treatment. Eventually everything will settle into a routine so hang in there. I had many concerns and questions [still do] and the great people on this site really helped and supported us and still do. Welcome! Contact me any time. I am praying for you.
Blessings
Debbie0 -
35 questionsGoalie said:Welcome (I guess) to a place you hoped never to be
The good thing is that this is very treatable so have confidence in that. The bad thing is that even if you are lucky in your treatment and get off lightly, it is going to be hard.
What you need to find are the Superthread and the 35 questions. (Perhaps we should include these in the Superthread, eh?) The questions tell you pretty much all that you should ask your doctors and the Thread has links to the discussions about everyone's experiences with everything from neck burn to nausea and dissections to disability. The collective wisdom as it were.
And, as others said, just talk to us about your hopes and your fears. We have all had these. Also, encourage your caregiver to get on the Caregiver side. This was a lifeline to my wife who probably suffered more during this than I did and who was truly heroic. Me, I just had to put up with the treatment. Doug
I did find the superthread (thanks sweets) but what are the 35 questions you referrred too
Linda0
Discussion Boards
- All Discussion Boards
- 6 CSN Information
- 6 Welcome to CSN
- 121.2K Cancer specific
- 2.8K Anal Cancer
- 440 Bladder Cancer
- 306 Bone Cancers
- 1.6K Brain Cancer
- 28.4K Breast Cancer
- 391 Childhood Cancers
- 27.9K Colorectal Cancer
- 4.6K Esophageal Cancer
- 1.2K Gynecological Cancers (other than ovarian and uterine)
- 12.9K Head and Neck Cancer
- 6.3K Kidney Cancer
- 666 Leukemia
- 789 Liver Cancer
- 4.1K Lung Cancer
- 5.1K Lymphoma (Hodgkin and Non-Hodgkin)
- 235 Multiple Myeloma
- 7.1K Ovarian Cancer
- 53 Pancreatic Cancer
- 486 Peritoneal Cancer
- 5.3K Prostate Cancer
- 1.2K Rare and Other Cancers
- 532 Sarcoma
- 717 Skin Cancer
- 647 Stomach Cancer
- 190 Testicular Cancer
- 1.5K Thyroid Cancer
- 5.8K Uterine/Endometrial Cancer
- 6.3K Lifestyle Discussion Boards