I am a 60 year old physician in internal medicine specializing in spinal cord medicine. On August 9th I felt a lump on my L neck. I had an FNA biopsy done the same day that has come back with metastatic P16+ squamous cell Ca. Still awaiting final staging.
I know a fair amount about cancer and have a idea from treating my own patients what a rough road is ahead of me.
I have lots of questions but two that I am interested in right now as far as planning.
I would be interested in knowing people's experience working during different stages of their treatment and when, if they did not work during any part of their treatment, they were able to return to work assuming remission or a cure.
I've learned alot from browsing through this MB. I'd also like to know if there are other message boards or forums that are especially helpful.
Thanks, DrK
Hello and welcome. Everyone reascts diferently to the tx for this disease. For myself, I thought I could keep working for a while but I only lasted about 3 days. I was driving public transit bus at the time and when the 1st wave of nausea hit I knew I couldn't work anymore. And I didn't return to work for almost 7 months because I was very fatigued and in a safety sensitive occupation that just wouldn't do. Many others had entirely different experience and I'm sure you will hear the full range, plus lots of support from the wonderful people here. I didn't find this site til weeks after my tx ended and seeing that other people had made it through and were getting on with their lives really helped. Good luck in your journey.
DrK - welcome. Sorry you have to be here but this is a wonderful place for everyone to share and help one another.
To answer your question personally: I had a neck dissection and 6 wks of IMRT (although no chemo) and it floored me. I was on my back for the next 3 months and didn't return to work until perhaps 5 months after the end of treatment. And then only part time. I'm also a writer working from home so the physical strain was a good deal less than someone in your line of work.
Best of luck with your treatment and please keep us informed.
Hi, Dr K
My husband worked 4 days/week from most of his tx - did not work chemo days. He took the last week of tx off, but was back to work the week after for Thursday and Friday. He works with computers at a university, and has a lot of flexibility at work, otherwise he couldn't have done this. For the first couple of months post TX, the weekends were devoted to resting! Also, since he didn't have the platinum based chemo, he didn't have the immune system issues that would have made working with the public problematic.
Besides the fatigue issues others have mentioned, you may have trouble talking for a while, and the nasty mucous stuff may take a while to clear. If my husband had a normal job, he probably would have had taken the last half of treatment off, and returned to work full time 2-3 months post treatment. You will probably want the radiation burns on your neck to heal so you don't scare your patients.
If you have any sports or hobbies, do them as far through therapy as you can manage. When things get tough, walking the dog (if you have one) everyday gets you out of the house to somewhere other than the radiation department and chemo room.
The American Cancer Society also has a chat board but I like this one better. Best wishes and let us know how you are doing!
Thanks so much for the information.
DRK,
Hubby worked thru week three of treatment. When the pain and inability to eat kicked in the beginning of week four he stopped trying to work. Narcotics = no driving. He felt pretty lousy for the next three weeks, lost his voice and was hospitalized for fever/neutropenia the last week of treatment. But, he bounced back, was working, off all pain meds, and eating by mouth two weeks after treatment ended.
So...like we all say..everyone is different.
Wishing you the best as you begin this journey.
Deb
My Dad is at the end of the infamous week 3 and like others, fatigue socked him good as rads are cumulative. He's the Evil Kenieval of life mishaps and has one of the highest tolerances to pain I've seen, and it's hard to keep him on meds but our experience urges me to suggest that you research your meds and be prophylactic with them. His CCC is very vigilant about this and encourgages swallowing as much as possible, and as an observer I can share the fatigue limits physical work, but exercise is critical.
Hi there - and welcome! Sorry you have to be here - but this is great place - with regards to your second question there are other places on the Internet - but most of them are "all cancers" with a few of us around, or not as well organized - this is the best!! In so far as I can see.
Now onto your first question!! As everyone here has said we're all different. I felt okay up to the last few days of rads (30-33) at that point i was not good!!! Mostly just because of the mucositis - there was a lot of discomfort - and I was drooling like a great Dane. Frankly it was GROSS. This continued for the two cumulative weeks post treatment. I did not use my peg (it made me throw up) so for about 7 days I was on oxy. I would take an oxy wait for it to kick in rinse with the magic mouthwash then chug a bottle of ensure! I did this mostly for the first week then I weaned myself off the oxy over a couple days. During this time I watched a lot of really bad reality TV in between naps. I started seeing improvement by week two. Technically I felt good enough to go back to work a month or so later - but didn't because I do tech work for the school board - and am off for the summer.
Chemo wasn't bad to me either. I had the standard nausea for a few days but no real vomiting as I was careful - usually I would take my antiemetic for break through nausea and then down my ensure. I only received 2 rounds because my WBC was low at one point and they couldn't fit it in even though I wanted them to. I was blessed through this whole ordeal in that I didn't suffer as much as most. My neck tanned and peeled (I'm olive skinned) I didn't really blister or burn but I was also very religious about applying my cream.
Food wise. I did mostly ensure from about week 4 - it was a taste issue, I figured eating was not fun or comfortable - so let's make it as quick as possible. I would manage 1600 calories a day and lots of water. I lost 20 lbs. Total. I'm down a bit more now becuse I am eating but not breads or sugars, though I am active. I still take a power smoothie every morning with about 45 gms of protein to kick start my day. I did this through my whole treatment.
Walking and staying active is a good thing as you probably know. I walked my dog twice a day for about 20 minutes. Except for the really bad week. Then I could only manage 1 walk a day ( oxy didn't get rid of my pain just put me to sleep! ) I also went to the gym up to week 4.
However - to add a little perspective - I know a gentleman with OC who lived with his head in a bucket from his first chemo treatment up to a month after his last. He had HPV + BOT cancer with node involvement. He was very sensitive to the cisplatin and lost 60 lbs. He's doing great now though - and I feel good too. I believe I'm 14 weeks out. I can eat most things, though spicy food, and acidic foods are very uncomfortable still, and my sweet taste is still avoiding me! Being in the medical profession, you will likely need to make sure your immune system is back to work before you are, but other than that - hopefully you'll kick it in the pants and move on quickly. Hope this helps!
Good luck. And take care
Thanks again so much for the information. I think that this will be a great place for my wife and I to find support. I�ve always tried to be a doctor who listens more than talks and have probably learned more from my patients than they have learned from me. In starting this process there is nothing like the news you get from those who have been there and done that.
PET CT followed by pan endoscopy and tonsillectomy on Monday.
I worked thru my induction Chemo but stayed home during the 7 weeks of Rads, I finished on 11 Nov and went back to work plowing snow for 19 hours on the 29th of Nov. We are all different and it will depend on how you react to Tx. Hope this helps!! Semper-Fi Bob
Welcome to OCF Dr K! Nice to see a doctor join. But I am sorry that you are joining due to your illness. You have come to the best! This is the most comprehensive site for all info regarding oral cancer. There are also the main pages which frequently get overlooked. On the main pages are many news articles and an unbelievable amount of medical info.
Being a physician, you have seen the worst side of cancer. You also know that no 2 patients are going to react the exact same way to treatments, medications and procedures. Best way to get thru this is to work hard at keeping up your nutrition and hydration. Recently there was a newer member who sailed right thru fairly easily only feeling the worst effects the last week of treatment.
I stopped working right around when i began my chemo and radiation treatments. i was fortunate enough to have a very good job where I was able to take a long break from working to concentrate on my health. After being on the forum and seeing so many people go thru treatments, if I had to give a guess at how long you could continue to work I would say 3 weeks. If you will be given chemo, try to get weekly doses instead of the 3 large doses every 3 weeks. The 3 large doses of chemo are more potent and many of us (myself included) skipped the 3rd dose due to being so ill. As far as returning to work, I went back 6 weeks after finishing my treatments. I had a desk job which did not require any exertion. Im sure you are on your feet, making important decisions so I would say 2 months after finishing you should be able to return on a part time basis. Of course I am just making a guess. I hope you have an easy time and do not have to worry about missing much work. But unfortunately, weather you can make time or not cancer has a way of forcing itself into your life and taking center stage, everything else becomes secondary.
When all is said and done, you will learn so much from being on the patient side of this battle. Cancer will teach you to value what truly is the most important things in life, your family and good health. In the end, this is going to make you one heck of a better listener to your patients and much more understanding. Oral cancer is not an easy one to go thru! It affects things that other cancer patients dont have to deal with. Many patients and their caregivers end up needing a therapist and anxiety meds to help them to cope with the devastation oral cancer can cause both mentally and physically. This forum will help you with everything! We are here to help both you and your wife. Anyone who offers to give you a hand, write down their name and contact info and let them know that when the time comes, you will call them for help. Now is not the time to be proud, its ok to ask for help. I hope its not necessary but even if it is to pick up groceries or meds from the pharmacy, it will ease the load from your wife/caregiver.
Hang in there, it really will be ok.
Hey good luck with your up coming tests!
Hi Doc K
Last question first: there is NO VIABLE ALTERNATIVE TO OCF FORUM for oral cancer patients, yes, I know I shouted that via all caps, but I thought it was important for you to recognize that you are already ahead of the game here in finding OCF so early. I only read Mayo Clinic, NIH, medical journals my first TX due to two faulty assumptions: first, that a patient based forum would not have have any info that the doctors wouldn't give me and second, that going to a CCC would mean a true integrated approach or having a patient navigator. Both were wrong. You can take a look around the net, but the Base of tongue cancer survival group on Livestrong is typical: 21 posts this entire year with half of them by me. Not even a slow day at the OCF forum.
Work depends on you and your job. I worked from the time I was diagnosed in August 2007 right through radiation and chemo in Sept, October and November. Since the radiation was daily Monday thru Friday, I set up a home office with a Virtual Private Network, a secure laptop issued by work, and my speaker phone for meetings. I answered most of the emails from 1 pm to 4 am when I could not sleep and wrote memoranda and opinions in the afternoon after a nap. By December I went back to work in the office but retired that January. Not because I couldn't do the job anymore, but because I had a foreboding premonition that the cancer would come back and I wanted to travel with my wife before that happened. Turned out to be a good call.
While you likely can't do your patients virtually on line (yet), the paper pushing and meetings workload is easily doable IMO. Sorry you have to join OCF, but welcome
Charm
Hi Dr k,
Sorry that you have had to join this group, but you won't get as much support from anywhere else. My husband was a concretor, finished treatment end July 2009 and has not worked since he started treatment. He is not qualified for any other job. He still suffers extreme fatigue, can't even mow 1/2 the lawns. His immunity is extremly low, I have him on Echinasia [sp] for trying to rebuild his immunity.
Thing to remember is that everyone is different. No 2 people are the same. You as a Dr would know to listen to your body, and if you need to sleep, so be it. Excercise [walking etc] can assist, but not if you are unable.
My hubby has most saliva back, and his taste back which is fantastic. Biggest problem for him/us is his fatigue and immiunity. Main thing is firstly to look after you, and try not to get cranky with your carer - assuning it's your wife she might be doing it tougher than you, so don't fob her off.
Good luck for all your future treatment, just get rid of the shitty dis-ease.
J
xoxoxo
DrK - Glad you found this great site! This is definitely, without a question, the best place to be for all the very latest info on Oral Cancer. Plus you have the direct experience of so many others who share their experiences, suggestions and compassion for what you are going through. When I found this site, my son had already started Rad Tx and without OCF, I don't know how we would have made it through to his successful recovery. He's coming up on five years being cancer-free and we owe a large debt of gratitude to the founder of OCF and everyone involved in making this awesome site what it is! Please stay in touch and keep us updated on how you are doing.
Like everyone is saying, everyone reacts differently, but I was unable to work from a week before my surger, until 7 months later due to complications from radiation and peg tube, and infections.
Everyone is different.
Also, after those 7 months, I went back to work. But the thing that sucks with this is you aren't deemed in "remission" or "cured" until you have had 5 years of clear scans. So hopefully you won't have to be in "remission" to go back to work, but just cancer free!
Best of luck!