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treatment ending, how did you deal with it?

ratface's picture
Posts: 1319
Joined: Aug 2009

Hello all. I have 2 RAD treatments left and then they cut the apron strings and I wait 9 weeks for the PET scan. I just feel so left out in the cold. Yes I've read that this is normal but are there any other considerations I should be thinking about. This is not a major cancer hospital. I ;m thinking I should be looking for and ENT for a neck disection which I've been researching has a higher survival rate. It seems the optimal time for the surgery is six weeks post treatment because of something to do with the skin. I would be wasting that window. How many of you did some planning in the interim, consulting with other doctors and how many just left everything to fate? This is really affecting me emotionally, any advice?

Posts: 8
Joined: Sep 2009

I had two weeks of down time then had Brachytherapy. The only surgery I ever had was the removal of the mass (lymph node) on the left side of my neck. My doctor in LA, who was supposed to be a leader in the Oncology field, told me not to have a PET Scan for at least six months after the radiation because of false positives. I had the CT Scan three months post radiation and it was clear except for a node already present in my left lung. Don't know if that helps....also I had to see bot my Oncologist and my Radiation Oncologist at least bi-weekly in the first two months after radiation.

pk's picture
Posts: 192
Joined: Aug 2009

My husband finished yesterday. He already has an appt. with his ENT for about 4 weeks post rad. and he will see him every month from then on in for the first year. He will have a pet scan in 3 months and then meet with the radiation onco. According to the posts here it seems the jury is out on when the best time for the PET is - I guess you just have to follow the advice of your concologist and ENT. PK

Posts: 1
Joined: Sep 2009

Finishing treatment was definitely a difficult time for me. You go from actively fighting the disease back to a period of just sitting around and waiting, with little to no transition in between. With no hard work to focus on I started to think more and more about the disease itself. You just have to do what you can to live your life and stay happy and well-adjusted. You won't feel great 100% of the time but if you can manage 80% you're doing better than most people who don't have to deal with the illness. I'm a little jittery myself because my first post-rad checkup is this coming week, so I'll be thinking about you when I'm there!

ratface's picture
Posts: 1319
Joined: Aug 2009

Very difficult time to deal with. I don't have the energy to do much yet I feel as if I;m wasting precious time. Did any oncologist give any departing words of wisdom, call if you see this or that? My lymph node which was enlarged quite a bit is back symetrical with the other side of my face, so that looks good. However it is still hard to the touch.

John why did you have brachytheapy 2 weeks post, added insurance. or had you not done radiation?

I also have a lung node that we really don't know if it was there prior to all this which scares me to no end. Doctors don't seem concerned but then again its not them. Not looking forward to the sit and wait while this stuff can be still growing? How do you alleviate that?

Skiffin16's picture
Posts: 8286
Joined: Sep 2009

I just finished my final radiation treatments about three months ago now, ended the 18th of June 2009. They did my PET relatively early, actually my Oncologists ordered it, my ENT would have preferred to wait for a ferw months as you have alot of things still going on.

As for a neck dissection, it was mentioned up front pre-treatment as a possibility, but mainly as a last resort if the chemo and or radiation didn't dissolve the tumor (the tonsils were removed before any chemo or radiation). I forgot to mention that I had tonsil cancer SCC stage 3 with a small tumor that developed on the side of my neck behind and below my right ear.

Anyways the PET came back clean and the tumor had actually dissolved before my third round of chemo. I had nine weeks of chemo (three week cycles) of Cisplaten, Taxotere, and 5FU (which was on a pump for four days). After the initial nine weeks of chemo I started seven weeks with chemo and radiation. Carboplaten every Monday and radiation every weekday for 35 days, with Amifostine injections in my stomach every one of those days.

It is weird having so much attention during treatment, and once you're finsihed they just kind of cut you lose and schedule you for appointments 6 - 8 weeks away.

It's something I'm sure you get more accustomed to as time goes on. I can only recommend surrounding yourself with postive people and kepp your thoughts positive also.

The first few weeks after radiation were still pretty bad as for throat pain and discomfort. I was probably on nothing but water and Ensure for several weeks a few before ending radiation and a few after. Even with only water and Ensure I need the pain liquid solution just to swallow the liquids. I never needed the PEG and made it through losing about 40#, definitely a rough diet.

Eventually you'll start feeling better a little at a time and the fatique will deminish as well...just hang in there and do what you can when you feel like it, the rest can wait.

Good Luck and Take Care,

delnative's picture
Posts: 450
Joined: Aug 2009

I have read, and was told during my treatment at Johns Hopkins, that some people feel suddenly cast adrift when their treatment ends. That's natural. After all, you've been the center of attention for a couple of months, everyone's been paying attention to you, and then all of a sudden, no one wants to see you.
To be honest, I did not feel that way, but I can certainly understand why someone would. I just relied on my doctors, and today, one year later, everything seems to be fine.
Of course, your mileage may vary, but that's how it's been with me.
Good luck.
--Jim in Delaware

jkinobay's picture
Posts: 255
Joined: May 2007

They wouldn't "cut the apron strings" if they weren't confident in your level of progress and ability to continue to progress.

Don't worry.................Live Happy!!

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