Since so many people have had similar experiences, was wondering if anyone has something similar that I could find out some of the things to expect.

My wife, Pam, diagnosed and treated during the last year had a biopsy a couple of weeks ago that came back positive for squamous cell cancer. The biopsy was of a lymph node under her arm. She has had 2 PETs so far, first time had more concern with possible spread in tongue but all biopsies came back clean. After the second PET, there was concern with the lymph node under the arm, her vocal chords, a spot on her ribs and some small nodules in her lungs.

From the consultation today, we were told that since the SCC from the mouth had spread to another area of the body,further treatment would be considered to slow down or delay the cancer but the cancer would now be incurable. They have scheduled another PET scan for next week and barring many other areas lighting up, plan to remove the tumor under her arm. From the discussion with the doctor, it sounds like they believe the nodules in her lungs to be cancerous, they have grown between the scans. They feel the spots in the lungs are still small and while I believe they mentioned removing them, it may have been that they were talking about going after it with chemo. I know the doctor stated that they would not want to start chemo without some way of monitoring if it was working and currently the nodules in hte lungs would be too small.

Pam had returned to work full time late in February. I asked the doctor about work and they stated that many people continue to work while they are feeling well, to help keep them active and occupied.

To me this doesn't sound like a favorable prognosis.

My questions for anyone here would be, what should we expect for the future? I know everything is different, miracles happen, etc. but if Pam does have a limited time left, I want to make it the best for her.

Once the cancer has metastisized, how quickly does it spread? I know I asked what things we should look for and it sounded like it could materialize anywhere, in the bones, organs or other lymph nodes. Have others experienced 1 to 2 years before serious problems or more like 10 to 15 years?

How long have others continued to work? Currently our insurance is through her work but during the first round of treatment, she expended all vacation and FMLA to where we were paying COBRA at the end. We have already passed our out of pocket for this year, so would like to continue her insurance. At what point in a diagnosis should we start checking into disability, and has anyone had any luck?

Lots of other questions but I think these are the ones that will keep me up tonight. Would appreciate any responses.

Thanks,

You might want to have your wife check into her pension benefits. My husband had to be on disability before he could start collecting them. At that point he was considered retired. Maybe she can get some answers from her HR department. Disability takes a little while but we filed the papers even before my husband went out all together. We just went in, talked to a case worker and when he was actually ready to go out, we called and activated it.

Just be sure to ask her doctors to talk to you honestly. I got way more info when I told them that I didn't want anything sugar coated. I needed to know what to plan for and even though their were unexpected issues, I feel like I was pretty prepared for the fight. Best of luck and if you need anymore info, feel free to send me a pm.

Sue

Tom, sorry to hear of this development. I have heard that a diagnosis of recurrent cancer means a good chance of SSDI disability. In the mean time look into some alternate opinions. If there is truly no treatment options then consider that time is important. I won't dare speculate on whether months or years.

I think you should look into Minnesota Care or Minnesota Comprensive Health (MCH). I suggest calling a County Health or Social Service office in your area right away.

Take care

Thank you for the responses. Pam does work for the county and has been part of their retirement plan so will contact them and check into SSDI. We do have insurance available through my work, albeit the coverage is not as good and it is more expensive.

Suemarie, I have just started reading back through some of your posts and am sorry for your loss. I know in January some of the posts here left me needing to take some time away from the website as it seemed like there was a stretch of bad news.

If it is OK I will read further through your experience and probably have some questions. If you are more comfortable I can do it privately otherwise I am fine with baring my soul here in case it helps anyone else.

Tom,
Just wanted to say that I have you and Pam in my prayers.
Donna

Tom- Ask away. I'm comfortable sharing my experience but it can be disturbing, that's why I thought you might want to pm me. I certainly am willing to put muself out there to help anyone. I've gotten so much help on this board-I can't imagine what it would have been like without all these amzaing people.

Sue

Tom
despite the long term prognosis the fact that you are still being offered treatment options is a very good sign that you can still look forward to some quality time together.Rob lived just three weeks after his recurrence was confirmed and had no offer of life prolonging treatment.Nevertheless we used that time to the full.He was not bedridden and was lucid and aware,and set about putting his life in order.All i could do for him was follow his instructions,and be there for him 24/7.We had some great talks,and said everything we needed to each other -forgave past transgressions,held each other sat quietly ,saw friends,said our goodbyes.whatever time scale they give you tom don't put off anything you want to do together or say to each other,times may get rough and will slip by too quickly,so svour every minute of every day.

good luck to you both.

love liz

Tom, an added observation that recurrent cancer in the head or neck can sometimes be a rapid life ending event. If Pam has mets to other areas, then the time could be quite a bit longer. The reason I strongly suggest getting other opinions is because some Doctors will essentially write off any further treatment when another doc might do something that will yeild longer life with quality. There have been several here that have extended their time with treatments that were NOT horrible. Please look into Mayo or any other superior hospital you can get to.

With regard to medical insurance coverage, go after anything you can get. Don't wait for one then try for another. Try to get on everything. It is bad enough to deal with the cancer you shouldn't have to ruin your finances.

Thank you for all the thoughts and suggestions. I am sure I would have put off some of the calls I made today if it wasn't for you guys.

I talked to the MO office and basically asked the question "How long?". It was a good conversation, somewhat shocking but I feel that I would rather know than put things off until too late. I know that things are still too early to know much (how fast it is spreading, what treatment can be done, we may know better after next weeks scan) but really wanted to get their opinion. Was told that typically when these metasis' occur, would estimate 10 months to a year. In her favor, the spots are small and with treatment can possibly be held at bay for years.

Armed with that info, called her retirement plan and inquired about disability and was told to not wait to file paperwork, get it in even if it needs to be refiled later. Will also make the call to SSDI tomorrow to get that in motion.

She has been being treated at the UofM-Fairview and she has been happy with treatment there. I think I will check with our insurance to see what is necessary to get a second opinion at the Mayo. It is only about a half hour further away.

I know that this past year has been a mixed blessing that I feel guilty about. We have been married 23 years and like most marriages have had good and bad times but have spent more time together, laughed and talked more during the last year than probably the previous 5 years.

Sue, I am still getting through your posts and Liz, I believe it was while I was reading through your experiences with Robin (if I am not mixed up, particularly the part where you took the dog to see him) that made me step back for awhile. My heart goes out to both of you with what you have had to deal with.

I know this isn't the most upbeat topic on here but what you have shared in your posts is probably one the main reason I come here, to find some insight, guidance, and sharing of the grief and pain.

Thank you all.

Your right Tom i did take the dog to see him in the hospice lol.Its 4am in the morning here and she is lying asleep on robins side of the bed (which is now officially hers!)

I am pleased you got such an encouraging time scale Tom it gives you some options of how to spend it.Good luck with the scans.

love liz