Cancer staging

Hi Sharon 

I can’t understand that sort of attitude with cancer patients. So much recovery is predicated on attitude and how the patient is feeling. 
I know clinicians can’t give all the answers but reassurance and truth are surely paramount. 
V 8 I’m sure is a genetic marker sort of thing. It’s just another ingredient of the tumour’s identity on a microscopic level. I’ve no idea of it’s prognostic value if any. 
Lymph node tissue lives in a fibrous capsule ( like a sheath or a balloon, if you like). Extracapsular spread means that the cancer has invaded through that capsule into the surrounding area. This is why they didn’t remove it surgically instead zapping it with the RT. 
CO9.9 is just code for tonsil. 
Sharon, I’m sure they’ve fixed him. It’s a heck of a worry but his PET/CT hopefully will show that everything’s ok. 
I know it’s hard but try to pin his consultant down next time. 
In the meantime see if you can make any inroads with his dedicated nurse? She might be able to liaise. 

So sorry you are both going through this. The tendency of some clinicians to treat and move on to the next one is hopeless. Maybe that’s the only way some of them survive? 

Thanks Dani

Thats a really helpful explanation of everything. 

I really must learn to stand my ground and not be intimidated by the medical team. My breast cancer team are the complete opposite of Ken’s team. They always have time for me and indeed they always ask Ken how he is doing before they turn to me. It’s become a bit of a standing joke between us and my plastic surgeon. We went on Monday and when we walked through the door he said “ah lovely, here is my favourite couple”. 

I feel like Ken’s team don’t like it when we ask questions and when we’ve done our own research. The dedicated nurse is actually the worst one and she is very abrupt. I will attempt to be more assertive at our next appointment though which is in 2 weeks.

I really don’t see how anything could have survived the treatment Ken had i.e. 30 RT and 6 Cisplatin. He keeps asking me to look at his neck and yes the left side is slightly swollen but it’s had a hell of a bashing so hopefully it’s just swollen tissue. 

Hes dizzy all the time too and fell over on the patio and cut his eye and his neck at the exact place where the tumour was so that won’t have helped either. He’s now been given Stemetil to help with his dizzies and nausea and he’s getting a 24 hour blood pressure monitor fitted in a couple of weeks.

Now all we need in this house is the bloody Corona virus and I think I’ll put a cross on the door!!!!

Hi Sharon and Ken

I really feel for yiu nit having a good team for Ken , my Dr Sen is brilliant I even have his email address tinstay in touch with him. But Danni has given you excellent advise   as usual. 

I had 35 radiotherapy sessions and 2 big chemotherapy sessions my oncologist gave the chemo different in big doses instead of weekly. What Ken will be feeling in his neck is the tendons hardening try massage on them make sure it’s not lymohodema which is the swelling of the Surrounding tissue s again quite common. 

The dizzy spells can be caused by low blood pressure I had that occasionally which did clear in its own but a 24 hour monitor won’t hurt I have normally slight high b p sontake ine 5 mg tablet which although my b p went low no one would take responsibility for me coming off it so I stayed on it. 

My final scan was 18 weeks after treatment again no right or wrong time just that if it’s done later I was told less chance of hot spots showing again no right ornament wrong way I know people that’s had them at 10 weeks no hot spots and at later time and still shown hot spots . Just keep reassuring him .

yes stand up for him don’t be intimidated take your list of questions and make 2 copies give one to consultant and tick tick off when answered and write reply down H xx

Yes.......

See the difference a decent clinician makes? 
id forgotten about the lymphodema. I had some but managed it on my own just by massaging it at every available  opportunity, usually on the loo on my very frequent visits resulting from drinking masses. Too much info, sorry 

Good evening Sharon and Ken, to tell you the truth I never knew what all my numbers, letters etc meant and still don't, I think its wrong for you to be treated like this being rushed and unable to get answers to your questions, my consultant was the complete opposite and encouraged me to ask questions even if they sounded silly, hopefully, next time you will be able to get the response you deserve. 

    It must be hard to accept that the tumour has been treated and cured when the lump is still there but I'm positive that a lot of people who were not operated on but just treated have made a 100% recovery. He could be just going through a down period that we all go through making him a bit negative, I'm sure he is doing ok but you can always ask for an earlier appointment if you are worried. All the best, take care.

                                                   Chris x

RadioactiveRaz

Morning Hazel

Thank you for that information. I didn’t know about the tendons hardening and didn’t think about lymphoedema. Ken’s consultants never said anything about either of these side effects. 

My consultant Omer Osmani is the complete opposite of Ken’s. Think I might have a crush on him!

I will definitely write another list of questions for his appointment in 2 weeks and will take 2 copies. What a great idea, why didn’t I think about that?! Honestly I think I’m a bit brain dead! I’m going to try a phased return to work starting 01/04, just 2 hours a day from home initially. I hope I have the brain capacity to think about other stuff  outside of my current cancer bubble!

The one question I did ask his team was whether we could fly to Zante or Corfu in early May for some much needed R&R.  They suggested we wait as his scan will be due about then. The trust’s usual policy is 12 weeks post treatment but they said they would scan Ken at approx 14 weeks. Like you, I’ve read about the false positives when scanned early and I think it’s a tough call weighing that up against the patient’s mental health.

Anyway.....turns out it was a good decision to not book flights as most have been cancelled due to Corona. You’re in the right place.....enjoy the sun and the relaxation and if I was you I wouldn’t be rushing back to the UK!

You've probably seen the news but at least 5 Jet2 flights to Spain had to turn around yesterday and they’ve cancelled all flights to Spain, the Balearics and the Canaries. 

I think we’ll be waiting a while before we take a rip to hotter climes and will have to make do with a break in the UK. I have 2 nights in a B&B booked in Scarborough at the end of June as my fave Alfie Boe is playing at the open air theatre for National Armed Forces day. I would like to get abroad though!

Thank you chris2012.

Im certainly going to be more assertive at Ken’s next appointment and take 2 copies of my list of questions. 

I do think you’re right in that Ken’s having a down period. It’s inevitable I suppose. In the earlier days post treatment he was so busy dealing with all the side effects that he probably didn’t have time to think. Now he’s thinking about all we’ve been through and the lump on his neck is worrying him. 

He’s still in bed (he still sleeps for England) but as soon as he gets up I’ll be telling him what you have all said. He always asks about everyone every day and I call you all by your forum names and not real names. He loves to hear what is going on, on here.

Ive been able to get some mental health fresh air and have been out for a few bar meals with friends and family whereas Ken hasn’t been anywhere other than hospital or round the block with the dogs. He would love to be able to go to a pub for a pint or some food but his mouth and throat are still too painful.

Ill try to get him more upbeat today.