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Sorry about the diagnois Sera! your cancer seems a bit aggressive, but I have seen so many cases like yours and eventually their cancer has got cured after chemo therapies and radiation therapies. hope you get well soon.
tamiznluv I wish you and your hubby a long life.
So, I need to revive this old, old thread. My son, late 50s, long time smoker was diagnosed with stage 3B esophageal cancer a couple of weeks ago. PET scan showed it has not spread to any other part of his body.
Today the did a feeding tube directly into his intestine. He will be in the hospital for several nights. They are planning on starting a 5 week regimen of chemo/radiation in a week. Assuming that treatment is successful, after a 2 or 3 month observation period, the doctors want to remove the portion of his esophagus that contained the cancer, and stretch the stomach up to reattach to the remaining portion.
Does anyone on here have any person experience with this?
I've burnt up the internet trying to read up on this, but I'm still feeling helpless since he is Boston area and I'm in Florida.
So very sorry your son is going through this. I had stage 4 pharyngeal cancer so not the same as your son but I can sympathize with what he is faced with. I too had a feeding tube and a port (for the chemo). I had 37 radiation treatment and 7 chemo treatments. The best advice given me was to swallow a lot, if he uses the feeding tube he will not be used to swallowing. Get a good radiation lotion to lessen the radiation burn. Stay as positive as he can, this is a cancer he can survive and live a pretty normal life. He is lucky he caught it before it spread further.
The very best of luck to him and as his Mom just stay supportive and positive for him.
So, I need to revive this old, old thread. My son, late 50s, long time smoker was diagnosed with stage 3B esophageal cancer a couple of weeks ago. PET scan showed it has not spread to any other part of his body.
Today the did a feeding tube directly into his intestine. He will be in the hospital for several nights. They are planning on starting a 5 week regimen of chemo/radiation in a week. Assuming that treatment is successful, after a 2 or 3 month observation period, the doctors want to remove the portion of his esophagus that contained the cancer, and stretch the stomach up to reattach to the remaining portion.
Does anyone on here have any person experience with this?
I've burnt up the internet trying to read up on this, but I'm still feeling helpless since he is Boston area and I'm in Florida.
Thanks in advance.
Boston has some very excellent cancer centers, hopefully he is going to one of those and not a local hospital.
My hub had it in his right tonsil. His was not caused by smoking, it was caused by the HPV virus. Your son may not know if his is from HPV because they would need a biopsy. It doesn't sound like he's had one.
As Jersey says, drinking is very important. He needs to make sure he does not stop swallowing something on a regular basis because he could lose the ability to swallow if he doesn't use it.
He also should not use the feeding tube if he can still eat normally.
See my two posts below that are found in the beginning of this thread. The second is the questions for a doctor that I wrote. The national cancer society has a message board for oral cancers, another for esophageal cancer.
Quote:
Originally Posted by Roselvr
My hub was stage 4- right tonsil; golf ball sized mass in neck plus lymphs- positive for HPV & it's the type that spreads. Diagnosed 8/30/09- surgery (radical neck dissection, tonsil out plus feeding tube) 9/22/09 - rad & chemo 11/09 finished 12/24/09
Where they are treated makes a huge difference in outcome.. My hub had a wonderful surgeon in Philly & is doing well. He's in a lot better shape then others- a lot can't swallow/eat; have massive pain.
I don't get here much; if anyone wants to email me feel free.
The best places to go are Cancer Compass in the head & neck section (it's the busiest) as well as head & neck at ACS
Those not knowing what to ask; you can use these as a base.
Please add to it...
1. We know the cancer is Squamous Cell Carcinoma. It was in his right tonsil, right neck and lymph nodes. Are there any other sites (from PET Scan) that show cancer?
2. The cancer in the Lymph Nodes is it also Squamous Cell Carcinoma or is it considered Lymphoma?
3. There are various types of head/neck cancer. Exactly what type of cancer is this so that I can look it up? (example – is it throat?)
4. Is the cancer HPV positive & if so which type of HPV? *Note- more than likely, they can't answer this for a few weeks...usually the biopsy is sent out to differing lab & may take 2-3 weeks before it came back HPV+.
5. How often do you see this type & how many have you treated with my type and location of Cancer? *Note- If not experience ask if there is someone at that location that he would recommend
6. Is his cancer curable?
7. What are the survival rates? 5 year, long term?
8. What are the chances of recurrence or new cancer?
9. We know that he is going to have Chemotherapy and Radiation; can you tell us what Chemotherapy drugs you will use?
10. Will the chemo and radiation be done at the same time?
11. Will he be hospitalized at any point for Chemo/Radiation; or will it be done as an outpatient?
12. Will the Chemo drugs be given by mouth or IV? *Note- you might also add the power port to your method of delivery.
13. What is the approx. recovery time & What do you feel are the most common side effects I can most likely expect?
14. What are his other options for treatment?
15. Will you change the treatment if he is not responding?
16. Is there a clinical trial for this type(s) of cancer?
17. If clinical trial, ask what phase. Also ask if it’s randomized and if placebo given.
18. When the cancer was biopsied, did they do Genetic Tumor Profiling to see if he can do targeted chemotherapy?
19. What type of radiation will he need? How many radiation sessions?
A. Do you offer Tomotherapy or Cyber Knife?
20. Can we have a copy of the pathology report and copies of protocol?
21. What is the histology & cell type of the tumor?
22. What is his current prognosis?
23. What is the 5 year prognosis?
24. Does he have any bad prognosis factors?
25. Is follow-up treatment necessary? What does it involve?
26. Will I need a feeding tube and what type of Dr do we need to care for it? *Note- Some use a general surgeon; while others use a gastro
27. We would like to see a nutritionist; do you have someone you can recommend?
28. How do you feel about complimentary therapy such as Vitamin C drips?
29. Will you be the one managing any pain he has?
30. Will I have to come to the office to pick up prescriptions if there is a pain medication change?
31. Since we live in another state, should we look for a pain management Dr in our area?
32. He has been having problems sleeping. Are you able to prescribe something for him to sleep?
33. Do you have a dentist the specializes in evaluating my teeth before treatment starts? *Note- radiation is damaging to the jaw/teeth; some will need teeth extracted & should be evaluated by a dentist that knows what to look for.
34. Do you use a speech pathologist on your team? If not we need to get one that has had radiation experience of the head and neck
35. Do you have a Social Worker that can help me with financial aid and or short or long term disability help?
*Note- If HPV positive in male; female may want to see her GYN to have an HPV test. Males can not be tested for HPV. HPV can be carried for 30 years
Roselvr & Jerseyj, Thanks for your replies, and yes a biopsy was done to confirm that it is cancer. He isn't bashful about asking pointed questions, and I know that he has discussed many of the other items on your list, and if all goes well, the 5 year survival rate is in the 80% range. I've got my fingers crossed that he is in that 80%. And I will share with him the need you both expressed about swallowing.
In the mean time, his wife is with him, and he and I talk once a week or so. That and prayers are about all I can do.
Roselvr & Jerseyj, Thanks for your replies, and yes a biopsy was done to confirm that it is cancer. He isn't bashful about asking pointed questions, and I know that he has discussed many of the other items on your list, and if all goes well, the 5 year survival rate is in the 80% range. I've got my fingers crossed that he is in that 80%. And I will share with him the need you both expressed about swallowing.
In the mean time, his wife is with him, and he and I talk once a week or so. That and prayers are about all I can do.
What really helped was having contact from family and friends letting me know they where still out there. His type of cancer treatment is pretty intense and encompassing, not much time for "normal" day to day stuff. So he and his wife might feel isolated from their usual day to day. His wife will likely need some support as well. Do you have the relationship with her that you feel comfortable calling just to let her know you are thinking of her? She is likely as terrified as he. Just a thought.
Sending you all healing thoughts and strength.
What really helped was having contact from family and friends letting me know they where still out there. His type of cancer treatment is pretty intense and encompassing, not much time for "normal" day to day stuff. So he and his wife might feel isolated from their usual day to day. His wife will likely need some support as well. Do you have the relationship with her that you feel comfortable calling just to let her know you are thinking of her? She is likely as terrified as he. Just a thought.
Sending you all healing thoughts and strength.
Thank you. His treatment is supposed to start next week. He spent 4 nights in the hospital for the feeding tube. I've traded a couple of text with my DIL, we get along fine, and they have 3 adult kids that are keeping a close eye on them, although none of them live close by.
The idea of removing part of his esophagus has me scared to death.
That is where his feeding tube will likely be necessary. It will take a while for his esophagus to heal so he'll probably be dependent on the feeding tube for a while. The other side effect I experienced from the radiation was dry mouth. The radiation damaged my salivary glands so I have decreased saliva production to assist in swallowing. The radiation might affect his larynx, he might lose his voice for a little while. I lost mine for about a week and was getting ready to start voice therapy and it came back out of the blue so that was a pleasant surprise!
All of this this sounds pretty overwhelming and it is but he (and you) need to keep your eyes on the outcome. I am grateful Every. Single. Day. for the knowledge and skill of the professionals who treated me.
So, I need to revive this old, old thread. My son, late 50s, long time smoker was diagnosed with stage 3B esophageal cancer a couple of weeks ago. PET scan showed it has not spread to any other part of his body.
Today the did a feeding tube directly into his intestine. He will be in the hospital for several nights. They are planning on starting a 5 week regimen of chemo/radiation in a week. Assuming that treatment is successful, after a 2 or 3 month observation period, the doctors want to remove the portion of his esophagus that contained the cancer, and stretch the stomach up to reattach to the remaining portion.
Does anyone on here have any person experience with this?
I've burnt up the internet trying to read up on this, but I'm still feeling helpless since he is Boston area and I'm in Florida.
Thanks in advance.
The people I know who had feeding tubes had more problems with them clogging than they did with chemo or surgeries for similar issues. A lot of doctors including ER doctors have trouble with them. One would assume flushing would take care of a clog but apparently not.
The people I know who had feeding tubes had more problems with them clogging than they did with chemo or surgeries for similar issues. A lot of doctors including ER doctors have trouble with them. One would assume flushing would take care of a clog but apparently not.
A case where the cure worse than the disease
Good Luck
Talked to my son today. He is back in the hospital with feeding tube issues and some blockage in his intestines. Chemo will be delayed a few days. I believe he has a J-tube, but my hearing is so bad I only understand about every third word that he says.
His mother had a PEG tube put in towards the end of her struggle with ALS. This was over 20 years ago. I kinda twisted her arm to have it done, and now, looking back, did the procedure extend her life or merely prolong her agony? I dunno, and will beg for her forgiveness when next we meet.
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