Liver clear, after resection, but now a tiny bit in the abdomen - option obs for 3 months or Chemo??

Hi Nettie123 

So sorry to hear that . Do you think finding out a bit more information on what options are fully available for you would be of benefit .

Is there a surgical option at this juncture and would it be a good time to get a second opinion to see how other clinicians would handle it .

Not sure where in the abdomen it has surfaced but you might want to know a bit more about Hipec etc .

You also would want to know the clinical reasoning behind watch and wait . My mum has done it to make sure it was in-fact cancer but acted as soon as they knew for sure . Some wait as there is no pressing need to start treatment. Did you get a Pet scan ?

Thinking of you and so sorry you have another bump to climb .

But you will get there .

Court x 

Hi Court

Thanks for your swift reply. Yes, I think a PET scan would be excellent and would help to clarify things more.

I wonder if they will agree to do one. I will be asking lotsof questions, when I get to speak to my oncologist.

Surgery was not mentioned. My nurse specialist said she ask for details re the size, which - I guess - eould be useful.

Hope all is well with you and hour wonderful mum.

Nettie x

Hi Court / anyone who wishes to reply,

I've asked to speak again, with my Macmillan Nurse, to see if she can request (via my oncologist) a PET scan of the whole area. It seems strange that the CT (without contrast) - on 5th June, showed possible mets (tiny area) in the abdomen, mets in the liver and possible mets/issue in the lung, but the liver MRI (with contrast) - on 10th June, showed no issues at all.

I've just received a telephone appointment, with my oncologist. It's for the afternoon of 21st July. Seems a long time to wait. So far, it's only my Macmillan Nurse who's discussed it with me. 

Have to admit, I'm feeling fine. Enjoying swimming and running again and doing my weird morning dance/strange workout to music (guaranteed to entertain if nothing else - even the dog find's it amusing!).  

Best wishes to everyone.

Nettie 123

That’s most strange indeed . That would certainly help see if there was any uptake I would think . Plus you might want to chat through surgicaL options like Hipec etc if it’s located on abdomen and is small and accessible. You would want a full discussion on options and make an informed decision.

You sound in great shape . Well done , you are remarkable. My mum’s oncologist is good at going through the details and the pros and cons and I think you need that time to fully investigate and reflect .

Take care ,

Court 

Hi Court /anyone

Yesterday received a telephone appointment, to discuss chemo or watch and wait for 3 months, with my oncologist. Today received a letter cancelling it. Instead of the 21st July, it's now 2nd August. My next 3 monthly liver MRI scan is due at beginning of Sept and they won't even have discussed the first.

I'm still not fully certain of the results as the CT appeared to conflict with the MRI. Just not sure what to do.

My Macmillan nurse was meant to be phoning me back, this afternoon after 12.00  Now informed she's running late and it will probably be on Monday.

I feel temporarily 'written off' and quite confused and worried by it all!  Happily I'm looking after my 4 year old grandson tomorrow so won't have time to be worried!!

Best wishes for the weekend

Nettie

Gosh that’s rough Nettie123 . Have you thought about getting a second opinion. That would make sure another set of eyes are looking at it ?

You could have  a chat with your GP and see if they can make contact for you .

By the time you get to your appointment you will be significantly through the watch and wait period without agreeing to it . Holiday season is always more difficult but it certainly needs a push .

Enjoy your granny duties ! Wonderful way to spend the day .

Court 

Hi,

Just thought I would pop on here to give you my experience on watch and wait. 

I was diagnosed last year of recurrence after 10 year being totally clear. Needless to say was a shock to the system when told it was stage 4 incurable and inoperable. 

My oncologist informed me we were going to do watch and wait every 3 monthly scans to see if the tumours were behaving. I questioned this and he said he didn’t want to offer me treatment as I had a good  quality of life and I never had many symptoms, also he said it was about quality of life. 

We did 3 monthly scans after great deliberations on my part and considering a second opinion. As it turned out my tumours were growing millimetres so not much. 

I’ve just started my treatment plan a few weeks ago and glad now I had 9months of normal life had 5 holidays. 

Did I make the right decision I guess that’s something I will never truly know but my oncologist said it’s slow growing so fingers crossed. 

Thinking of you on your deliberations but you must go with your gut. xx

Hi Cath

It's nice to hear from you. Part of me totally agrees with you re: the watch and wait - it gave you the chance of having some great, fun times and good quality of life, before having more treatment.

I think, if I'd been given full information re: size etc and if there hadn't been discrepancy between the MRI and CT, then I'd be inclined to opt for 'watch and wait'. It's just the lack of clarity and the fact that my Oncologist hasn't even discussed size of mets and isn't free now until August!

My quality of life is brilliant though. I just keep pushing the 'not knowing' to the back of my mind! It's a beautiful Summer and loads to keep busy with. 

How is your treatment plan going? I seem to remember they were considering Folfox. Hope all is going well with you and that your treatment is being kind to you.

Very best wishes

Nettie xx

Hi,

I see where your coming from in not knowing sizing ect. 

My treatment is going ok lots of side effects tho but part of the course to hopefully keep me here longer. 

The wait is terrible so I totally get your concerns it’s a shame you can’t get the information you need. 

Thinking of you ️

Hi Faloola (Cath), Court and anyone reading this

My Macmillan nurse did not phone back on Monday. She's a lovely person, but totally snowed under with work!

My telephone oncology appointment was brought forward to Friday 7th July (this morning). I spoke with a lovely registrar (working under my oncologist) and she fully explained what was going on re: the CT and the MRI scans. She said there was no discrepancy between the scans. The MRI of the liver showed areas of scaring and regrowth - NOT mets. The right lung, however, shows one nodule has increased from 2ml to 5ml. There is also one which was possibly there before and another totally new one (one is 6ml and another is 4ml)

What my Macmillan nurses described as near the abdomen, is actually the IMA artery - showing increased tissue, but nothing else.

Their decision overall, at this stage, is to 'watch and wait' and scan again at the beginning of August. I'm totally happy with that as would rather 'watch and wait' at this stage.

Best wishes to everyone

Nettie x