How well did your ENT / oncologist provide transition to potential after treatment options?

For me each diagnosis, initial and recurrence, were within the same hospital and health care organization. In both cases the surgeries and radiation were successful in excising the cancer. Each time upon discharge from the hospital, other than follow up visits with the ENT's and Radiologists, there was very little direction or assistance given regarding potential quality of life improvements with physical therapy.

Because of my swallowing problems I was referred to a specialist where multiple attempts over several months resulted in minimal improvements.

I was 18 months out from my last radiation treatment and dealing with what seemed like an ever reducing ability to open my mouth more than 1/2" and increased pain / spasms in my jaw and neck before I finally started to search out some means of relief other than just increasing my pain meds. Researching the my area for the best available physical therapist(s), I found a group that specialized in after treatment of head and neck cancers. In the same health care organization....

Over the last month and a half, the results from the PT are starting to be reflected in a reduction in jaw joint pain and muscle spasms in the neck and jaw area.

I do wonder if the PT was started as soon as feasible after completion of radiation treatments, if there would be any difference in my daily quality of life.

So. I'm very interested to hear from any / all of you regarding your experiences associated with transitioning from surgery or radiation treatments AND / OR if you feel improvements could be made regarding this phase of recovery.

This topic has been discussed many times on the OCF forum. Too many patients feel abandoned by their medical team after their treatment ends. An occasional follow up is very much different than seeing your medical team every day. There have also been several studies done on this subject. By participating in these studies, it helps future OC patients to avoid the lack of attention most OC patients feel. Studies can take years before results are tallied, many never even get published.

Recovery from surgery isnt easy. Recovery from rads for most of us was even harder than recovery from surgery. We all know how hard an OC diagnosis is to deal with mentally. When our bodies dont go along with what we expect during the recovery phase, it can make the whole ordeal even harder to manage. We all know the past isnt possible to change. Dwelling on things that are not within our control can make for some pretty miserable patients (some caregivers too). All we can do is look forward and try to do positive things to help ourselves. Some days focusing on the positive isnt an easy task but with practice those dark days will be a rare occasion.

Christine -

It's only with careful consideration and analysis of what we've been through that we can better determine if the system could or should be adjusted.

I posed the question as a thread and offered up some of my personnel experience associated with the transition from treatment.

The PT team I'm working with has been trying to assist the ENT's in developing a system that would get patients into PT much earlier and potentially be more beneficial in terms of long term quality of life. My intent was to "test the water" and see if my experience is typical or atypical.

It sounds like this subject has been discussed before and would therefore not be worthwhile to proceed.


Since you are an administrator, please delete the thread.

Ive sent you a private message. Click on the tiny flashing envelope next to the My Stuff tab.

Please do not delete this ! PT is a very important option for so many of us !

Dont worry Jo, this thread will not be deleted. Bjmpittsburgh and I discussed the need for this to remain for the newer members.

As in my previous post, this subject is important to us all. The search function (small box near the upper right corner of any page) can bring up many relevant posts you may find interesting. I mentioned the studies as it is so vitally important we all participate to get our combined voices heard. Often caregivers are able to participate with their input as well.

I read maybe 5 years ago, part of the book at least, "From Cancer Patient to Cancer Survivor: Lost in Transition addressing many issues, and seeing such concern.

As people with cancer are living longer, having more survivors, there is more a concern with Cancer Survivorship, which term is being used by cancer doctors, and affiliations, including for head and neck cancer, physicial therapy and other after care.

The American Cancer Society recently published Head and Neck Cancer Sirvivordhip Guidlines for clinicians. NCCN also has one for Cancer Survivorship, as well as ASTRO, American Society for Radiation Oncology, and a Head and Neck Surgical Society, forget which one, are having their own on Survhvorship.

A problem too with outpatient PT, Occupational Therapy, and Speech and Swalow Therapy, and others, may depend on the type of insurance coverage one has and its limitations. To my understanding, with Medicare I can only receive around 14 PT and Speech and Swallow Therapy per year, but can do it again for a separate incident, such as surgery or hospitalization. Surprising, occupational therapy is sepetate, I believe, but there are ways of having longer, which requires more paperwork, which route I was never involved with.

I participated in a few telepjone, web interviews, and written questionnaires that were offered by aithourized sources by OCF. I also try to participate in other questionnaires, but is subject to meeting their qualifications. I didn't have any clinical trials per say, but I am being followed by my radiation oncologist for reirtidation and Proton treatments I had, and my ENT presented my case at the ASTRO annual convention at a seminar for 'Complicated Cases in Head and Neck Cancer, so hopefully these will help people in the future.

Paul -

Thanks for your response. I will check out the book you referenced as well as the studies mentioned above.

Great point about the health coverage and the limited amount of PT available for different plans. That's something that I did not consider.

Bjmpittsburgh,

Here is the Survivorship Guidelines from the American Cancer Society. I tried to forward earlier, but I lost most of my high speed data for my iPhone while in rehabilitative nursing care for almost two months, and was working like a snail.

Speaking of such, I went to rehab after my 7 day hospital stay after surgery on 9/9/16. With Medicare, at least, you have to be hospitalized 3 days to go into inpatient rehabilitative nursing care. I'm sure there are other qualifications, like some pertaining to your care at home situation, mobility, house steps, etc. when the social worker speaks with you.

Now that I'm discharged, upon my early request, I can go to outpatient Speech and Swallow Therapy based on the incident, surgery, even though I may have used up my yearly allocation.

Another thing I was going to mention was the doctors themselves. Not as much as my cancer doctors, but private primary care doctors that didn't want to send you for any testing, rehab, or much else going back a decade. I was told that there are some doctors that get paid by the insurance company, forget what it's called, if they save such services. I never fully looked into it, but I did change my doctor.

American Cancer Society Head and Neck Cancer Survivorship for Clinicians:

http://onlinelibrary.wiley.com/stor...5d5a072e8542d6fcb6afa50a6c9f1d86699f2b9f

This is the PDF highlight update for the 2016 version for NCCN Survivorship for Clinicians. You can also see it on NCCN website, which I have, including an App, which is pretty comprehensive, but you need to join, it's free. This I can't make a copy of:

http://www.jnccn.org/content/14/6/715.full.pdf

Here is the Medicare part B Cap for Physical Therapy, Occupational Therapy, and Speech and Swallow Pathology:

https://www.medicare.gov/coverage/pt-and-ot-and-speech-language-pathology.html

All the best

Paul -

Glad to hear your out of the hospital.

AND

Thanks for all the information. I'll need to take some time and review.

Thanks Again!

Hi,

Just like things going a 100 MPH when getting a diagnosis and the flurry of appointments and treatment, the opposite happens the day after treatments are done - going 100 MPH to zero.

That feeling of being all alone and deserted is nearly universally common and understandable. It is now for you to get into the driver seat and guide your recovery.

There is plenty of medical support available but being proactive is going to get the most attention you need. Just like treatment, it is vital to stay hydrated and find ways to get calories in and keep the pain under control.

It does get better and you will heal up. Good luck, don