Hello!

I am joining because my mother was recently diagnosed with spindle cell carcinoma of the tongue. She had a partial glossectomy with neck dissection one week ago and the margins, PET scan, and lymph nodes were all clear. Dr. said today it is stage 3 and she will need approx. 6 weeks radiation w/ PEG tube. This came out of NO WHERE, my mom isn't a smoker and a growth just appeared one day on her tongue and grew very large in 3 weeks. Due to the suddenness I don't think she/we were prepared for just how difficult recovery and treatment are going to be. Any suggestions? Things to keep in mind? What to expect? Thanks very much in advance!

Make your mom eat as much while she can do it. Eating is going to be difficult for her and swallowing won't be too easy at times either. Stock her up on soft
foods ahe likes and if you don't have a blender buy one. Make sure she drinks a lot of fluids and plenty of water. JUst be a good caregiver to her. That is one essential person for her and I bet you are it. Good luck to you both and I know she will be on a lot of pryaer list.

Put a profile in but make it a little better than mine is. LOL I will redo it one day soon. I was pronounced Cancer Free today and have to update it

Stock up on Aloe/painkillers as the radiation burns are rough, the ones developed in my throat are still not fully healed and I'm a year out of treatment.

If she's up to eating take her out to her favorite restaurant and have one last big "real food" meal because who know's when she'll be able to eat real food afterwards.

Insertion of the PEG tube and recovery from the surgery was the worst experience for me, but I think mainly because the people who performed it at the hospital I was at were retarded...literally.

As this whole thing is pretty scary make sure to take it one day, one issue at a time or it will overwhelm.

Lot's of luck to your mom and welcome to OCF!

I'd be pleasantly surprised if your Mom was eating anything after such a recent glossectomy and ND. I know it's been two months since mine and I can't swallow anything not even a sip of water. So if she cannot eat as suggested, that would be pretty normal. My advice would be to stay on top of the radiation skin burns, they creep up very quickly. Use the lotions, and push the doctors and nurses especially for advice as the focus is on curing the cancer so the "side effects" can be somewhat overlooked, You do not want your mom to end up like I did, having to go to burn dressings,
Finally, redo your mental calendar. While everyone does react differently to radiation, the worst usually comes in the weeks and month AFTER the radiation is done. If you know going in that the race is longer than it appears, it does help to finish. Last but not least, check into OCF with any questions or just to vent, No better bunch on the internet
Charm

Sorry to hear about your mom but there are plenty of things that you, as her Caregiver (with a BIG C) can do to help her.

Get her to eat eat eat and eat like she has never before. Make a list of her top 10 all time favorite foods and do nothing but stuff herself with them until she can't stand them anymore. If the label reads WARNING HIGH FAT, then get her to pounce on it.

The first couple of weeks will probably be a non event but don't think that's all the rad will do as she will most likely suffer like the rest of us weeks 4 thru 3 weeks post Tx.

During the rad get her to consume at least 2000 calories and 48ozs of water each and every day however she can and that's where the Peg comes into play as her mouth will become very sore and swallowing will be difficult and painful. Along that line stay on top of her pain meds. If one combo doesn't work let her docs know and try something else. Along with the pain meds can come the big C for constipation so talk to her docs early on to be prepared for it.

She may loose her taste (about 2 weeks in) and she may develop thick mucous ( about 5 weeks in) and eventually her mouth may go dry (usually post Tx).

Mentally this whole cancer thing will take a tole on her and you and the family. IMO the mental aspect is at least 50% of our battle so don't let things bother you all without talking about them. We are the best sounding board you could possibly have.

Everyone can be different but generally these are the things to watch out for at first.

This site will be like your Guide to Surviving OC Treatment except the guide talks back so read all the pages and ask away about anything that concerns you.

She is the first case of Spindle Cell that has come to this Board since I've been her. Do they say what the possible causes are? Is it similar to SCC?

Good luck to the both of you.


_____

Thank you everyone for your responses! It is so helpful to know what to expect.
She is going home from the hospital today - with all tubes and stitches removed for now! She passed a swallow test and can currently consume clear fluids. Hopefully she will be able to move to mushy foods before we start rad tx so she can eat lots. No apparent causes for Spindle cell other than usual OC risk factors - it is very rare and doctors were baffled by it at first, took a long time to get a definite diagnosis. Apparently it is a very aggressive variant which is why they determined stage 3 (tumor grew SO fast) despite no regional spread or metastasis.

She is doing great physically so far, I'm mainly worried about keeping her emotionally positive and strong. Before surgery she did not realize just how painful and challenging this all would be.

I know her main priority needs to be getting healthy, but as my Dad is retired and she is their only source of income, she is very concerned about working. Did anyone manage to work while getting rad. tx? She will have 30 sessions of 15 mins to target affected area. Would it be crazy to try to work?

I'd like to add my welcome and about the only thing to add is go to her appointments with her and write down everything and ask lots of questions. For me it was all such a whirl, if my wife had not been therer I would have been lost. She asked all teh pertinent questions and took notes on everything, it was a tremendous help. Best of luck.

Re working or anything else affected by her treatment...

You will hear this a lot and that is each of us can be affected differently by all phases of the Tx so in the case of working you will hear people say they worked all the way through it (rarely) and you will hear some say they couldn't work at all (rarely) but most often you will hear that they were able to work some but not during the really bad weeks which can be from 3 to 4 weeks into Tx and especially the couple of weeks post Tx.

She is the only one that will be able to determine if she's able to function at all near normal and she shouldn't push herself as her body will be under attack from the radiation and she will need plenty of rest and non mental activity time.

Welcome, as always the case I echo what David said. It depends on type of work, how she responds to treatments,when her treatments are, can she work on-line/home or does she need to be at the office. I was lucky and felt pretty good and did work...... maybe it averaged out to 60% or so. But I had a 140 mile round trip every day for treatments so that cut into my time. I was able to work from home some especially the last few weeks of Tx and 2 weeks post. Also at that point as I did not want to add another hour of driving time. I would expect best case she would only be able to work part time. Very few of us were able to do treatments and work full time. The key is to get plenty of rest and nutrition, then tackle work. I needed to work to keep my mind occupied.