On the journey......

wbcgaruss said:

Here is Some Input-Hope it Helps

I’m with MarineE5 on the part where you want to do this once and be sure the cancer is gone. The question is how do you do it in each case because the patient and the circumstances are different.

Since you are really troubled by this decision and you want to get it right is there other hospitals or cancer doctors in your area to get a second opinion? In my first cancer of the throat, I was confident in My ENT and when he found the cancer I got a cat scan, a pet scan, etc. and he referred my case to chemo and rad doctors which after meeting them and going over my case I was very confident in them. Of course, being a new cancer patient what do we really have expertise at? Really none of it we have to evaluate our caregivers by listening and using our common sense and gut feelings. Nowadays we can do research online about providers and treatments. It can get overwhelming fast. The standard treatment has been 35 radiation treatments with chemo beginning middle and at the end but I am sure it can be different for each case. That is what I had the standard treatment and I was clear for 5 years and then got a cancerous spot on my tongue. I thought I was in the clear after 5 years but you never know I have found out. Then about a year later I got a sore neck on the left side again and hoping it was radiation leftover waited till my next ENT appointment. Well ENT did not see anything he was really alarmed about but had me get a Cat scan anyway. Well, I had cancer again in one Lymph node and after a PET scan, it showed it was not encapsulated and growing into other tissue. Anyway, to shorten this up I was operated on at a more major teaching hospital because of my situation and afterward, they recommended follow up radiation and I also saw the chemo doc but due to the after effect of my previous chemo (neuropathy, some tinnitus) he did not want to give me chemo because of more damage. So I got the follow-up rads only 30 treatments and they were very careful with the rad plan because of my previous rads. I think they would have given me chemo were it not for my previous chemo and the after-effects. MarineE5 said they held back chemo in his case for a backup and it has worked out for him, that is great. So maybe in your case that is workable also. You have decisions to make for sure. Maybe even seeing your family doc would help I'm sure they have seen many cancer cases. One more opinion.

Are they recommending a feeding tube? If so I would say get it before you start as if you need it later you will be feeling bad and I think any throat swelling may make it more difficult but not sure about that. Don’t tough it out get the feeding tube ahead (My Opinion Only) and during treatment take plenty of meds if you need them and Stay Ahead of any nausea or pain you may encounter. If the rads affect your taste and saliva like most of us you will have a period with no taste and saliva may be very thick. Keep it cleared out and use the salt and water and baking soda mixture to rinse a lot.

Rinse your mouth every 4 to 6 hours, or more often as needed. Use one of the rinses listed below:

• One quart (4 cups) of water mixed with 1 teaspoon of salt and 1 teaspoon of baking soda.

Above all check out the Superthread at the top of the head and neck page before you get started as it is loaded with information you will probably find helpful. Prepare well.

 

Looking back I am satisfied with all my treatments and I believe all the doctors and nurses and aids did everything they could to eradicate my cancer and beat me up with the treatments as little as possible.

I would say get a second opinion. Use your gut feeling. If it doesn’t seem right ask questions and don’t proceed till you feel comfortable. Sorry this is so long but hope it helps and everything works out-Take Care-God Bless

Thank you, wbcgaruss, for such a thorough response!! We have a tentative second opinion set up, but I also don’t want to delay treatment, and things just seem chaotic doing anything right now with Covid issues, so I guess I’ll figure that out early this week. I got on the superthread, and just made a list of things to get this week, so thanks for reminding me that thread was available. 

Our treatmeant center and Speech Pathologist recommend NO tube so as to not lose swallow muscle and function....unless absolutely necessary.  So just praying that my husband is able to muster strength to forge ahead with swallowing when it becomes intense. He is a pretty big, solid guy, so there’s a bit of leeway as he sees it:;

I am sorry you went through this three times....I’m sure that was so difficult both mentally and physically. Your courage, and that of everyone here, really helps those of us new to this unwanted fight we’re in. Thank you!

Elizabeth

My husband has decided to receive the chemo therapy. He starts Radiation ( 6 weeks total) and chemo next week. We’ve stocked up on supplies, and ordered Skandishakes and Benecalorie supplements. The radiation department recommended to start with Aquaphor for his neck......I’ve read some like it and some don’t. So we got some, and just figure we can always switch if needed. Very scared to get going, but also anxious to start just to get things behind us. My husband is so wonderfully strong with a positive attitude!

HobbsDoggy said:

Attitude Will Help For Sure As Will Oncologist

Great news about the Oncologist.  Having an Oncologist that cares and takes her time and plans well is so important.  You are in good hands there.  It will make a world of difference.  Yep the chemo will add a bit of extra "fun" to the mix, but will help kick cancer's butt for sure.  Scared is a good way to be as if you were not you would not be a normal human.  As a friend of mine always says, the brest we will ever be is human.  We are all puling for you.  Keep us informred how its going.

Thanks so much for the encouragement!!

wbcgaruss said:

I am Glad

You have decided on a definite plan. That will relieve some stress. Now you can move ahead and focus on the treatment ahead-Take Care-God Bless

If it weren’t for Covid, I would feel very confident in our decision. As things are, I’m nervous about the benefit of chemo, versus the immunocompromised state my husband will be in, but he feels very happy with his decision, so I’m supporting him 100%, and we will just be OVERLY careful!!! You take care, and stay safe!!

big G said:

Pip Lily

I also had the TORS for BOT with several nodes involved on the right side. I was told to be prepared for the chemo but after the path report I was informed of no extension so 6 weeks of IMRT. 54 gys to the right side then the last week in the 60's to the tumor site. Extension is automatic chemo most if not all the time.The Aquaphor you mentioned is great stuff if you don't mind it being a little greasy and messing up a few t-shirts but I'm convinced it kept my neck in good shape no redness or burns. wishing your husband a speedy recovery. Stay safe.

Great to hear first hand about the Aquaphor. I was thinking of getting Aloe also, but maybe we’ll just stick with one thing unless it doesn’t work. 

Yes, I figured with the Extracapsular Extension that chemo was probably a done deal. I’ve been reading a lot of studies, though, that they may be rethinking the importance or significance of that with HPV POSITIVE patients. Our radiation oncologist says there will be an important study coming out most likely this summer, others later to follow, to see if there can be de-escalation either for chemo or radiation. Guess our diagnosis came too early to benefit from that possibly Glad for you that you were able to not have it!