Esophageal Cancer (pain, node, chemotherapy, bleeding)
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Anyone can tell me their experience with esophageal cancer, stage 4,
has traveled to lymph nodes; liver, lungs and now right leg. Doc says
till 2nd round of chemo, cannot tell how much time. July 31, when DH
vomited blood, biopsy revealed cancer.
First round of chemo, 4 hours at the clinic, then a fanny pack for 4 days.
Radiation five days a week so the bleeding will not occur again.
Anyone can tell me their experience with esophageal cancer, stage 4,
has traveled to lymph nodes; liver, lungs and now right leg. Doc says
till 2nd round of chemo, cannot tell how much time. July 31, when DH
vomited blood, biopsy revealed cancer.
First round of chemo, 4 hours at the clinic, then a fanny pack for 4 days.
Radiation five days a week so the bleeding will not occur again.
Thank you for sharing.
Sorry to hear about the diagonisis. I haven't personally known anyone with esophageal cancer. From the Dana Farber Cancer Institute's website there are only palliative treatment options, but, there is also a link to register for clinical trials. (see below)
When my dad's pancreatic cancer spread to his lungs, doctors gave him a year at best, and he made it two years. Some people of course only survive a fraction of that time. I suppose there's a general rule of thumb with a state IV diagnosis, but, there are always people who defy the odds, even with horrible cancers like pancreatic and esophageal.
I'm sure you've looked this up, or the hospital has provided you with info, but, here is the national cancer insititute's section on esophageal cancer:
Anyone can tell me their experience with esophageal cancer, stage 4,
has traveled to lymph nodes; liver, lungs and now right leg. Doc says
till 2nd round of chemo, cannot tell how much time. July 31, when DH
vomited blood, biopsy revealed cancer.
First round of chemo, 4 hours at the clinic, then a fanny pack for 4 days.
Radiation five days a week so the bleeding will not occur again.
Thank you for sharing.
I know how you feel right now. Like you got hit with a ton a bricks.
My DH has throat/tounge cancer and has just finished the chemo/radiation treatments. We go back Oct 13 for a PET scan to tell us if they got it all, if it has spread or if they can do surgery.
Sadly your doctor can't tell you. He/she just doesn't know. They treat with the expectation of healing.
It's a long hard road for you too. I hope you have people to help you. I would be lost without my support system.
Thank you for your replies; DH's sisters, family members came from out of town for a few days,
enjoyed the visit though trying. They did most of the cleaning and preparing of meals, very thoughtful !
For now, we have decided not to have any more chemo treatments, the doctor respects my DH
decision. Radiation treatments will be completed next week.
Yes, Granny Sue the Lord has provided numerous people for support and we will pray you and your
DH. Amazing how one reaches out to support others, you, yourself are more than bless/helped!
Again, thank you for your replies. One Day at a Time !
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
I wish I would have had this list when DH was 1st diagnosted....Everyone said...ask questions!!! Don't be afraid to ask questions.
We finally told a nurse that we didn't know what questions to ask. Thanks goodness she took us under her wing.
I wish I would have had this list when DH was 1st diagnosted....Everyone said...ask questions!!! Don't be afraid to ask questions.
We finally told a nurse that we didn't know what questions to ask. Thanks goodness she took us under her wing.
I don't come around here much; stopped when my hub was diagnosed. I have a few posts with information- I may even have the original draft of the questions I posted above in a post here. I guess I should write them in a blog too.
The questions are originally written by me; I'd posted them on the ACS board & others helped rewrite them. I'll make a new post & copy the above 2 posts into it for other head & neckers.
This is my 1st time here and hubby and I got devestating news today and that's why I'm here....to vent to someone.
Hubby was diagnosed with esophageal cancer 7 years ago and was told 2 weeks to two months to live. Hubby went into remission for 3 years but it's back with a vengance the past year or two. Doc told us today there is no more hope and he's going to die sooner, rather than later. We've had 7 more years together than we expected, only 3 of them were good but I'm still happy that he's been alive. Doc would not give me any time frame this time. lol, I knew he wouldn't, not after last time. One of the nurses though told me "sooner than you might think" and I trust nurses' opinions greatly, my mother used to be one.
sera, hope all is going well with your hubs. (((hugs)))
This is my 1st time here and hubby and I got devestating news today and that's why I'm here....to vent to someone.
Hubby was diagnosed with esophageal cancer 7 years ago and was told 2 weeks to two months to live. Hubby went into remission for 3 years but it's back with a vengance the past year or two. Doc told us today there is no more hope and he's going to die sooner, rather than later. We've had 7 more years together than we expected, only 3 of them were good but I'm still happy that he's been alive. Doc would not give me any time frame this time. lol, I knew he wouldn't, not after last time. One of the nurses though told me "sooner than you might think" and I trust nurses' opinions greatly, my mother used to be one.
sera, hope all is going well with your hubs. (((hugs)))
Thanks for letting me vent.
all i can do is offer you a HUGE cyber HUG Tami!!! Many,many hugs
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One of the nurses though told me "sooner than you might think" and I trust nurses' opinions greatly, my mother used to be one. 
