Hi Longleggedhair

I hope everything goes OK for you and your mum this week.

I have also had SCC of the tongue, have never smoked and although I used to go out in my younger days my drinking has never been what I would call heavy. However, what interests me is what you say about your mum drinking red hot tea. My parents used to call me "tin guts" as before they would sit down to have their evening meal or a cup of tea mine would almost be gone.

When I was first diagnosed, as everyone does, I just couldn't believe it having not been a drinker or smoker, but when I thought about it later I did wonder about the drinking and eating of very hot stuff. Perhaps this could have been the cause.

All the best and keep us posted on your mum.

Regards
Sue

Hi Everyone, well another interesting day today. The hospital was still refusing to give mom her CT scan today, they were insisting she wait until friday, despite the fact the oncologist needed the scans for Thursday when they have the MDT meeting. I called begged and pleaded and they still said No, so I told mom to get ready and we went and sat in imaging! Then I contacted the pals officer and asked him to come over. After some argument, they moved moms MRI forward to today from Wednesday and she will have her CT thursday and they will call the meeting with her results, so I managed to sort it in the end!

And Pam, your story is so inspirational, well done, i hope my mom recovers as fast, she is determined to be back at work for February!And yes Sue, could hot tea be the answer? I wonder?

Moms at the Birmingham Dental hospital tomorrow to make sure her teeth are all good for the radio, then its the CT on thurs, and we should be all ready to go!

thanks for your support guys, its really helped, and knowing people do beat this illness is good!

Oliver

Hi longleggedhair, sorry to hear about your mum. Fighting mode is good, the stronger you can be mentally the better it'll be for your mum. Hagg.

Thanks hag, its so good to know your still going stong after 12 years, its good to know you can beat this. All I could think of when we found out was those horrible NHS quit smoking adverts that were on a couple of years ago with that man who had throat cancer and he had a tube sticking out his neck, it was horrible, but its amasing how your mind learns to cope!

Yesterday was the dental hospital, and they said mom needs 4 of her back teeth out, she seemed more bothered about that than the cancer its self! She was there negotiationg with the dentist! But in the end he compromised with just taking 3 out!

CT scan tomorrow and the MDT meeting, then hopefully back at the head and Neck Clinic on Friday to find out the plan of action!

Oliver

Wow Oliver ,you sure have started your role as caregiver top of the class.You go!!!It takes good devoted family members like you to speak out for our loved ones and it looks as if you are going to be brilliant

Hi Liz, yes your right. But it should not take me having a fit on imaging to get my mom seen, you would think cancer patients would be given priority, sadly not though it seems to me.

Hi Oliver,

I hope everything goes OK for you and your mum tomorrow. Will be thinking of you both.

Sue

Gosh Oliver your frustration echo what I was feeling this time last year when my partner was diagnosed after months of going back and forth. It took 3 weeks after an excision of a suspected cyst for him to be told he had secondary cancer and we were then told it would take 3 weeks for a diagnostic scan to find the primary (which was in the tonsil). I managed to find a way to speed that up but it still took about 5 weeks for treatment to start. You may still have to do some waiting. Apparently it takes oncologists and radiotherapy teams about 2 solid days to do the planning for every patient - its important that they get it absolutely right.

Good luck to you and your mum.

Cathy

Hey Cathy, it is frustrating, but as you know you just have to keep battling! The nurse called this afternoon. She wants us to go back on Tuesday for the results of the Scans. The CT scan was today.

It was good as there was a lady opposite who had a lymphoma, and it was interesting talking to her and her family, although i know its different to a squamous Cell but it made me feel like we were not alone, if that makes sense.

Thanks guys. oli x

Hi Everyone, just to let you know we found out the results of moms Scans today. It seems that it has spread from her tonsil to the tongue base, and also they think the left gland is involved and possibly the right. Although her body scan came back clear, so its not spread to the lungs etc. He graded it as T2 N1, so if anyone knows what that means I would b greatful for your advice!

He said she will be given chemo and radio as we expected, but she would not need further surgery at this stage which is good.

He said she has about a 70% chance of success which is not great but could be alot worse!

one thing that did bother me was he said if the radio was not successful and the cancer did come back they would not be able to repeat it, which seems odd.

Oliver.

Hello Oliver,

hey also told me that I wouldn"t be able to do radio again if it came back. Radio does so much damage to the areas effected by it is why. That is why in most cases they say surgery first cecause it makes the tissue so tough and hard to operate on. Most surgeons prefer the radio to be done after surgery.

Best of luck to you and your mom,

Pam C

Hi Everyone,

Just to update you mom has been and had her mask made, what a strange procedure that is! The oncologist also had good news, they have decided that only her left nodes are affected, which is good news, they offered mom a new type of radio where they avoid the saliva glands, but mom decided to have the whole area treated, just to be on the safe side.

She had her scan, and the radio starts a week on monday and they are giving her the first dose of combaplatin on Tuesday. Has anyone else had this chemo drug? If so would be greatful if you could advise what to expect.

Thanks Everyone

Oliver

Hi Oliver

I assume the new radiotherapy that avoids the saliva glands is IMRT. OTher members have had it. It is now becoming the standard of care as it avoids unnecessary irradiation of the saliva glands and the complications related to the lack of saliva that can follow. If this is what was offered, take it.

The chemotherapy drug is carboplatin.

Best wishes

Vinod

Hi Oliver,

You brought back memories for me when I had my mask made last year. I still have it in the bottom of a cupboard at home. Some good news for your mum and good luck to her with the treatment. I only had radiotherapy(Not IMRT) so cannot help with the chemo but I am sure other members will help?

regards

Ken

Hi Oliver,

Definitely go for the IMRT. Dr. Joshi discusses it in the opening threads on the Medications, Treatment, Procedures forum. IMHO, "...mom decided to have the whole area treated, just to be on the safe side," is overdoing it. If she doesn't have cancer in her salivary glands, there's no point in destroying them. It takes longer to program the machinery for IMRT (it runs about 3 weeks here - I don't know if it's because it's that difficult or because there's a shortage of medical programmers/engineers).

Please reconsider. It will be so much easier for her. No matter what her decision, I wish you well and think you're doing a wonderful advocacy job for your Mom. Lucky lady to have you.

Mimi