Update and the next stage

Hi Bev

You're story is very similar to mine.  My son was diagnosed with Stage 4 cheek and jaw cancer in April last year.  He had his surgery in June, where they also had to remove bone from his leg to rebuild his jaw.  He had to have two x 8 hour sessions of chemotherapy and 33 session of radiotherapy.  In between all this he developed to large blood clots in his leg where the bone was removed and had to have twice daily blood thinning injections into his stomach.  He had a feeding tube fitted directly into his stomach before the surgery as obviously he wasn't able to eat.  He did find the chemotherapy quite tough, in fact after the second course he was in hospital for 7 days on IV fluids.  He found the radiotherapy very challenging, and his face became quite sore.  However, after an MRI scan just before Christmas he was told he was cancer clear.  His problem now is that the side of his face keeps swelling, and he has a fistula which is not healing.  His consultant has been on holiday, but is back tomorrow.  We aren't sure what they will do, but the last time he saw the consultant he spoke of another operation to investigate where the swelling is coming from.  My son is just 50, so hopefully he will make a full recovery.

How old is your son ?  I've found the whole experience very tough to deal with, but people on this forum have been wonderful with their messages of help and support.  

I'd say that you, your son and his partner need to have a discussion to decide what's the best way forward.  You have to be guided by the surgeon.  I do know that the side effects of RT can be awful.  My son had a very dry mouth, with ulcers all inside and on his tongue.  It was good he had the feeding tube as he couldn't swallow easily.  

Please keep us updated as to how things progress, I'll be thinking of you all.  I do know how difficult this will be for you.  

Take care

Janet

x

• Hi Janet it's a very tough journey not just for them but for us mums every day I wish it was me and not him. My son is 30 yrs old. I'm so sorry to read of the complications your son is experiencing but  so pleased hes cancer free. Fortunately if there is a fortunate my sons cancer was located to his cheek and In 1 lymph node but not in his jaw. Hes recovering so well I'm just so angry he has to encounter rt and the side affects but I keep telling myself that he will recover totally. He didnt get on well with the ng tube it ended up twisting and going into his lung. I think I most worried about jaw deterioration and his swallowing. Good luck with consultant next week I'll say a for you son xxx

Bev so sorry to hear about your son. If I was in a similar position I would be guided by the medical team. Yes radiotherapy is a real challenge but there are countless of us here who have survived and thrived. I did have an NG tube and I must admit that I didn’t feel it at all in the light of the pain in my mouth. It saved my life though. 
Some people are given a stomach feeding tube but having said that some manage without one at all. 
I hope your son can make an informed  decision 

Thanks Bev, it's so hard to watch your child in so much pain, I told him many times that I wish I could do it for him.  This past few months have been the hardest of my life.  My son has a wonderful wife and two lovely children and them and all the family have been so supportive.  It's all we can do, just be there for them.  My daughter-in-law set up a What's App family group so everyone is kept in the loop as to what's going on.  I message my son every evening and visit whenever we can, he's only about 10 minutes from us.  We do have an Alexa Echo, so can see him on that as well if we can't get over to his house.   Such a shame your son didn't get on the with tube, my son had one in for 8 months, it was changed half way through, and it's now out.  He relies a lot of Fortisip's which were prescribed for him from the hospital.  He also has smoothies, your son will find as the RT progresses that his mouth will be very sore, and my son also lost a little bit of hair at the back and he now doesn't need to shave on that side of his face.  Tell your son also to be prepared as the hospital will need to make a mask of his face before they start the RT.  That's so they target the right area and the head is kept in the same position.   Obviously the effects will depend on how many RT sessions he needs, as I said my son had 33 over a 6 1/2 week period, so very intensive.  I'm so pleased your son's cancer didn't spread to his jaw.  It made things so much more difficult for my son, we were praying it hadn't spread, and couldn't believe it when we were told he needed bone removed from his leg. 

Please let us know how your son gets on, praying that all will be well for him.

Janet

Hi Bev. I was 61 when diagnosed if I can do radiotherapy anyone can. I had n g tube fir last 3,weeks of treatment and first 3 weeks of recovery as Dani says it was my lifesaver. Personally I would go for radiotherapy as 1 cm margin isn’t a lot. I had 35 radiotherapy and 2 chemo. The side effects can be debilitating but we don’t all get the same issues he’s young as well which can only help. I’m 3.5 years post treatment and am over in Spain for the 8 or9 th time since treatment finished living my life riding my bike. My blog below may help honestly there’s nothing to fear . Of course decision is his snd only his. 
Hazel xx

Hi Bev

I stopped at surgery - and my surgery was nowhere near as extensive as your son's,  I went through all the pros and cons of radiotherapy post surgery and in my specific case decided not to proceed as there was no clinical evidence to say it was worthwhile at this stage in my treatment.  Based on what you have said I believe I would have opted to take the radiotherapy if I were in your son's position.  I can't help with the effects, but I thought that having been trough the decision process what I have said may help.

I totally get where you are at a personal level.  It is so tough.  My son had tumours in his knee at 30.  Eventually they were found to be benign, but he has to have then cut out every few years so he can walk.  It sucks being a parent and having the stress of supporting our children, but that is what we have to do.

Hi dani thanks for your reply I think he is coming to that decision it was difficult because his surgeon said many ppl in the room felt he didnt need further treatment but the surgon and pathologist think due to his age let's just be sure.i will have a read of your journey thankyou xx

Hi Janet we dont know how many sessions are needed  yet and I believe it's just rt was the rt aimed at your sons cheek or neck. They told my son the hair on his face wont come back. He still struggles to open his mouth fully due to the skin graft in his cheek I'm praying that the rt wont make that worse. 

I hope your sons team can get to the bottom as to why he keeps swelling and get it sorted for him. It sounds like hes been through so much. Sending love and thankyou I will keep in touch xx

Hi hazel that's amazing your living life to the full good on you I'm so happy for you. And I agree with you hes young and strong I suppose it's the fear of the unknown x

Hi Peter sorry to hear about your son it certainly is one of the toughest jobs being a parent but wouldn't change it for the world. Thankyou for your honesty regarding rt it it difficult because the surgeon was very honest with him saying if he was 60 hed say go and live your life but at 30 we dont want it coming back. Like I said before it's the fear of the unknown. I just hope and pray like everyone else that hopefully he recovers and has no lasting effect due to rt