Salvage surgery

MAD MEG said:

He is apparently to discuss "salvage surgery" with me, according to the letter I got yesterday.

The letter also says I am to have a general anaesthetic next Monday for a biopsy of the suspicious area (there were four areas originally).

Of course I have done some "internet research" of "salvage surgery" and as usual don't really understand how it might apply to my own situation. Does anybody have any words of wisdom for me? Most of the sites I have found imply it is for recurrent or advanced tumours but mine is supposedly not in either category. 

Hi Meg. Salvage surgery refers to surgery for recurrence or for treatment that didn’t work. Phone your CNS to find out what is going on. 
I should imagine they are recommending a general anaesthetic because the surgeon wants a good look round with the option of taking more than one sample. 
Hopefully they won’t find anything. My PET hotspot was benign. 

That doesn't quite fit my understanding of "salvage" surgery Dani, or at least how it was explained to me.

Similar absolutely, but my salvage surgery wasn't because the first treatment didn't work (it did), or because of a recurrance (my second cancer was a brand spanking new one); the surgeon explained it to me as operating on tissue that had radiotherapy damage from previous treatment....making it more difficult.

Perhaps that was just something worded specifically for me though, rather than a general definition. 

It is reassuring Mike to have an alternative explanation. Of course I won't know the true reason for my "salvage surgery" till Wednesday afternoon after my appointment with the Top Dog.

I have indeed found a couple of other explanations now on the terrible WWW including the fact that such surgery for reasons other than those that Dani mentions are relatively new (last 5 years, say).

My hubby (of 52 years!) has not been the greatest of help during these past six months (which I knew he wouldn't be) but he is great at hunting for things on the internet (despite hardly ever using it).To partially excuse him for his seeming lack of support, I suspect he suffers from (undiagnosed) ADHD but it wasn't until my younger daughter married a man who had it that we could all immediately see the similarities in behaviour. At least my SIL has had treatment for it and is greatly improved. It's a case of the spirit is willing.........

I am struggling to be positive. The last few years have also seen the death of several people close to me from cancer, with two of them in their thirties. My mother's two sisters both died of cancer at a similar age though of course that was in the 1950s. I am named after the one who died just  before I was born. 

All waffle of course, I just needed a chat!!!

Meg

Hi Meg waffle away it’s the fear of the unknown. Sadly you’ve been given half a story and until you see top dog nothing will allay those fears. But stick with us we love waffle. 

hugs Hazel x

MAD MEG said:

All waffle of course, I just needed a chat!!!

It’s stupid when we get half the story as Hazel says. The trouble is that these letters are intended for other professionals, written in a concise medical language and it’s only just recently that they have been available to the patient. There have been quite a few other forum member here and in other groups asking what the info means. I asked my oncologist about this at my final review. He told me that in Wales these letters are not released till the patient has seen their consultant. It avoids all this unnecessary worry. I just wish all trusts would do the same. We don’t understand the jargon and when we go hunting for it we go down rabbit holes. 
You’re in my thoughts Meg and I really hope your result is as my hot spot was. Benign. 
I had to have a GA for my biopsy. My surgeon had a really good look around and even called an ENT colleague in from a neighbouring operating theatre for a second opinion. 

Well, I really didn't learn anything new at today's meeting. I am to have the biopsy on Monday, General Anaesthetic to allow him to take a larger sample or more than one sample so he said. He did a visual examination (as did the trainee with him) and both agreed the area "looked good", but naturally he couldn't just trust to eyesight.

It will likely take 2 weeks to get the biopsy result cos of NHS staff shortages. He hopes there is no remaining cancer. He did say it could be scar tissue.

If there is cancer, it will be major surgery (split jaw or something similar), cos I have already had the maximum RT permissable, and two weeks in hospital. Made more difficult due to previous RT. Possible loss of swallowing capability and speech. I didn't ask why. The dodgy tissue is not that close to the throat - I thought. 

He said if I felt unable to agree to the surgery it would be palliative treatment with the aim of adding about 18 months to my life. I asked how many patients faced with this choice refused the surgery and he said "very few". I didn't dare ask what the success rate was.

I am naturally terrified of hearing the results of the biopsy. It isn't going to be bundle of laughs for the next fortnight, is it?

Hi Meg it’s  the waiting game fingers x his look turns out to be right.good luck for Monday and hopefully  results are back in the 2 weeks . We can’t have radiotherapy in the same area more than once. The tissue damage he’s talking about will be from your original radiotherapy but don’t go down those rabbit holes. Take it one step at a time. Get the biopsy done then let’s get the results. Easy to say hard to do. Find some  box sets to keep   you  distracted. 
Remember they always have to tell us the worst case of scenarios. 
hugs Hazel x

Hi Meg

Sorry to hear about the situation you are in. However your surgeon has given you the worst case scenario in great detail. Fingers crossed that it is a false alarm.Until  my surgeon has all the results in front of him he is much more circumspect with the info he gives me and that does help reduce the worry until there is something concrete to work with. I have had to face 3 occurrences of jaw cancer over time and have found that each time I have found the strength to face the ops as the alternative scenario is not appealing. Each time I have adapted to the changes and am living a happy life with my new normal and enjoying every day.   If it does come down to an op you will find the strength to do it but I have everything crossed for you that it is a false alarm.

Sending hugs

Lyn

MAD MEG said:

I am naturally terrified of hearing the results of the biopsy. It isn't going to be bundle of laughs for the next fortnight, is it?

I don't know how I did it but managed to put it out of my mind for the three weeks it took from being told there might be a problem (mandibulectomy...split jaw...being discussed) and results of biopsy. Oncologist report, biopsy a week later and results two weeks after that. 

Mine was scar tissue. I reacted very badly to RT. I had the highest grade mucositis they measure.

What cr*p this disease puts us through. Hugs

Hello again everyone. Well, I had the biopsy or biopsies last Monday (24th June). That seemed to go okay but I am still struggling with some pain. I hope this means he took some good chunks of me!! Hey ho, it seems to have eased a bit today.

He came to see me in the recovery room and said that it "looked clear". If it was down to what it looks like what is the point of having the biopsy tested? I wish they wouldn't indulge in this guesswork.

I got the appointment on Saturday to get the results and the date was 1st August. Mr P had said "within 3 weeks" - not more than five! I tried to contact my MacMillan Nurse but she was not replying to my phonecalls or emails (I got an "out of office" reply dated 2022!!). So hubby and I booked a 2-week holiday in our touring van to visit daughter down South.

Having planned all that I got a phone call today telling me that date was a mistake and I now have an appointment for next Thursday. Of course that is much more reasonable but terror has now set in, dreading the diagnosis and possible next steps (the "split jaw surgery").

I know nobody can do anything about the wait or the outcome. Just feel as if I need a few buddies right now.

Meg