My husband finished 7 weeks of radiation along with Erbitux and 2 doses of Cisplatin on Sept. 1. (Stage III/IV, poorly differentiated SCC) The PET/CT done at the end of Nov. showed reduced but definite areas of uptake at BOT and left neck lymph nodes.
Surgery for this is scheduled for the day after Christmas...
Is this a last ditch effort, or is there experience out there that this will do the job? The ENT seems to think it will be fine. He will probably have to have a trach while he is healing up. I am very worried of course. Rick is down to 124 pounds, still cannot eat solid food (PEG tube)and spends a major part of the day sleeping.
I really need some reassurance that the surgery is the right thing to do at this point...He is ready to do it though. He really wants to get better...
Thank you for any comments you may be able to provide.
Mary Ann
Mary Ann,
From what I understand, surgery would be the logical next step. But, s it possible to get a second opinion?
Clint
Mary Ann,
I din't have surgery first but was told it was still an option if the Chemo Rad did not do the trick so their plan seems realistic. Also one poster recently is being treated in a clinical trial to treat his cancer (1st time) with a cocktail of Chemos and no rad. You may want to ask about that. I am still surprised that the Chemo Rad didn't appear to kill the cancer.
Mary Ann,
My husband finished his rad/chemo and still had an enlarged lymph node. The ENT waited 10 weeks to allow the radiation for finish it's job, then did a neck disection to remove the nodes. He is still cancer free 14 months later
Linda
Hi Mary Ann,
It's been over 12 weeks since the treatment ended so they are probably right to recommend the surgery. Just make sure they discuss what they are planning on doing and what the likely aftereffects will be - and for what period of time. Some things they won't know until they get in there but they should be able to give a general picture.
Good luck, JoAnne
First, uptake with PET/CT at this date after end of treatment is quite common and does not necessarily mean there is still cancer. It is just as apt (probably, more apt) to be inflammation from the healing process, and in some cases, local infection. The radiation continues to work for weeks after end of treatment and thus 3 months is earliest date many recommend for a first scan, with another 3 month later to see what's happening. The radiologist who read Barry's PET/CT (who only does H/N and brain scans) says that with an expert reading the scan, there is still a "gray area" of uncertainty as well as about 5-7% false positives. This percent would be higher with a radiologist who only reads a few HNC scans a year.
Had an interesting talk last Friday with the medical oncologist at Hopkins who is the principal investigator in the HPV vaccine trial my husband is in. We asked her the rate of recurrence of HPV+ cancers (which tend to be tonsil and base-of-tongue, and also, poorly differentiated), and then, where recurrences would be expected to occur. She replied that they almost always returned in the neck lymph nodes. I asked if it made a difference if the patient had had a ND (my husband did not) and she said not really. She added that "ND is falling out of favor" (a quote) and that this was a hot topic at ASCO (Am. Soc. of Clinical Oncologists) meeting this year. Apparently some papers presented showed significant increased morbidity with ND and no improvement in long-term cancer control.One paper I looked up (from Fox Chase CC) showed a doubling of time for feeding tube dependence with ND, for example.
What I am leading up to is that you should definitely consult with a medical oncologist as well as the ENT (who is a surgeon and of course favors surgery). ND is supposed to add about 5-10% increased local control to the treatment but is not showing increased survival.
Gail
Has anyone considered a fine needle biospy to see if they can find cancer in the nodes before surgery? I know it isn't foolproof but it also isn't surgery either. Have you asked your oncology docs, especially your RO why the rad wouldn't have killed the cancer?
I'm not saying surgery isn't the next step but my ENT was ready to cut me open in his exam chair and he wanted to do a Radical ND before I said WHOA and later that week my MO and RO said no surgery necessary. They both said in my case surgery would do more harm than good.
We are going down for Rick's preop testing tomorrow. Thank you ALL for the extra information! I now have some more questions to ask....
Gratefully,
Mary Ann
Mary Anne,
DH had a trach and it was really slow to heal due to the rads which were in the vicinity of his trach. (Normally they heal up in a matter of a few eeks...DH's took months to heal.) A lot of people I ahve talked to have been slow to heal after rads...whether it was a neck resection or mouths healing from dental work that was done prior to surgery that took up to six months to heal enough to get dentures. I only mention this because rads can significnatly slow down healing and you might want to discuss this with the doc before he starts cutting.
As for the trach, I had to clean it four times a day to start with and then was able to drop back to twice a day. It is a lot of work, but it is important to keep it clean to prevent infection. I also had a knock down drag out with the home health service when they tried to make me reuse the disposable trach cleaning kits. I told them I was not comfortable reusing a disposable kit on a man who was immune compromised. They called the clinic and talked to a resident, but failed to mention that they were talking about a disposable kit that was not made for sterilization, so he told them it was OK. I called the Head Honcho and told him what was going on and he said to ONLY use a fresh kit each time. I then promptly fired the home health service. I lost all trust in them for trying to cut corners to save a few dollars at the risk of my DH's health, I was mad at them for going over my head to the clinic and not telling the resident the whole story, and when I called them to tell them why I didn't want them back in the house, I told thm they were there to make our lives easier, not to put my husband at risk or cause me more problems.
Don't let ANYONE bully you...do what you think is in your DH's best interest and stick to your guns.
Marcie,
You go girl!!
You remind me of my wife although sometimes I act as if I'm not with her or I want to stick a sock in her mouth. She's always correct in what she is saying but not always correct in how she goes about saying it. I'm not implying anything about you or your posts except your spirit reminds me of her. LOL
Ditto to David's post above.
Only the roles reversed. Husband Mike needs the sock but darn if he isn't always right!
I can't tell you the number of times I have shrunk in the chair at Dr visits wishing to disappear.
Anyways, Marcie is right, make sure your questions get listened to and the explanations are to your satisfaction.
Ginny
(Mike's spouse)
We are going down for Rick's preop testing tomorrow. Thank you ALL for the extra information! I now have some more questions to ask....
Gratefully,
Mary Ann
Mary Anne,
DH had a trach and it was really slow to heal due to the rads which were in the vicinity of his trach. (Normally they heal up in a matter of a few eeks...DH's took months to heal.) A lot of people I ahve talked to have been slow to heal after rads...whether it was a neck resection or mouths healing from dental work that was done prior to surgery that took up to six months to heal enough to get dentures. I only mention this because rads can significnatly slow down healing and you might want to discuss this with the doc before he starts cutting.
As for the trach, I had to clean it four times a day to start with and then was able to drop back to twice a day. It is a lot of work, but it is important to keep it clean to prevent infection. I also had a knock down drag out with the home health service when they tried to make me reuse the disposable trach cleaning kits. I told them I was not comfortable reusing a disposable kit on a man who was immune compromised. They called the clinic and talked to a resident, but failed to mention that they were talking about a disposable kit that was not made for sterilization, so he told them it was OK. I called the Head Honcho and told him what was going on and he said to ONLY use a fresh kit each time. I then promptly fired the home health service. I lost all trust in them for trying to cut corners to save a few dollars at the risk of my DH's health, I was mad at them for going over my head to the clinic and not telling the resident the whole story, and when I called them to tell them why I didn't want them back in the house, I told thm they were there to make our lives easier, not to put my husband at risk or cause me more problems.
Don't let ANYONE bully you...do what you think is in your DH's best interest and stick to your guns.
Marcie,
You go girl!!
You remind me of my wife although sometimes I act as if I'm not with her or I want to stick a sock in her mouth. She's always correct in what she is saying but not always correct in how she goes about saying it. I'm not implying anything about you or your posts except your spirit reminds me of her. LOL
Ditto to David's post above.
Only the roles reversed. Husband Mike needs the sock but darn if he isn't always right!
I can't tell you the number of times I have shrunk in the chair at Dr visits wishing to disappear.
Anyways, Marcie is right, make sure your questions get listened to and the explanations are to your satisfaction.
Ginny
(Mike's spouse)