What exactly does this mean Pt4b, N1b (3/28), L1, V1, R0, M1c. How serious?

Hi .

Good to hear that your hubby is over his op and starting chemo. I’ve attached a booklet regarding post-op stuff and staging and I’ll tell you what I understand of it.

https://bowelcancerorguk.s3.amazonaws.com/Publications/Your%20pathway.pdf

bowelcancerorguk.s3.amazonaws.com/.../Your operation.pdf

The T4b means that the tumour had spread through the Bowel wall - the P in front of the staging means that it has been confirmed by the histology report after the op

The N1 means there are 1-3 lymph nodes affected - in your hubby’s case there were 28 removed and 3 were found to be affected

The M1 means that there has been spread (metastasis) to another part or parts of the body

R0 means that the re-sected area (ie. the area around the tumour that was removed) was clear.

Im not sure what the other letters mean so perhaps you could give the nurses on here a ring on 0808 808 0000

Pleaer do not try and google - the information is out of date and downright scary in places . It’s understandable to want a prognosis but everyone is an individual and there are lots of people on both here and the Bowel Cancer UK site with Stage 4 who are living with cancer for my years.

Hope hubby’s chemo goes well

Take care

Karen x

Hi ,

Welcome to the forum . My mum has been a stage 4 patient for nearly ten years . One thing that helped us navigate this was to remember that he is a statistic of one . He is starting from a strong position having all visible disease surgically removed and chemo can be very effective for some people . It matters more how he individually respond to treatment than others statistics.  That alone determines his outcome . He is much further along the road than my mum was at the beginning as she was inoperable and chemo had a big job to do to shrink the spread . You can read her story by clicking on my user name . 

Learning to live with lots of unknowns was very , very challenging but you get there .

It is great he was operable and started chemo to mop up any stray cells . My mum did not want to know anything either but we did lots of reading , but stick to reliable sites . I would be half way through an article only to realise it was 15 years old . That’s outdated in the world of cancer . Getting to surgery changed prognosis so also be careful how you interpret some of the prognosis you may stumble upon as it’s a very individual treatment program and outcomes but often grouped together .

I wish your husband every success .

Court 

Hi Court

Thank you so much for your reply to my question. I am trying so hard to be very positive as Mark is extremely up beat and planning lots to after his chemo finishes. We are planning to go to Australia for a month with 14 days touring on motorbikes (separate ones as cant be doing with being a pillion!!!!) with my brother and his wife. gently deterring him from booking anything until after his chemo - just in case of any problems.

You are so right about the internet, it can be a great tools but also a nightmare at the same time. I also work for a Pharmaceutical company that  has an oncology team so again too much knowledge in some areas!!!

Mark has got "1st bite syndrome" Peripheral neuropathy, Nausea, dizziness and loose bowels post his first chemo yesterday but hopefully some of that will settle down over the next few days.

Strange question but we have a sauna in the garden (not infrared - traditional using wood for the heat) and we are wondering if it would be OK for him to use it still? sorry if I am asking something you do not know

Thanks again

Carol

Hi Karen

Thank you for your reply and the great information that you have given me. Those attachments are very informative too.

I am trying to stay away from Google etc. but it is hard. Just need to make sure that the info is up to date.

Mark has some side effects from the chemo but hopefully will settle down over the next few days.

Thanks again

Carol

Hi

The sauna heat sounds wonderful . My mum stayed warm during treatment . I honestly do not know about the sauna . They do get very concerned about port/ line infections . You could chat it through with our helpline staff 0808 808 0000 

I totally understand the aspect of too much knowledge. Our family are all in health care . No place to hide from the reality . But also came in handy too !!

take care,

Court 

Dear Court

Thanks for the reply. I have managed to speak to the consultant and he has said it is no problem if Mark wants to have a sauna. He does not have a port/line which makes things easier

Carol

That’s great news . Be interesting to know how it works for him . 

How are his side effects ? Hope they are settling a little .

Court 

Hi Court

not managed to have his sauna yet as side effects, peripheral neuropathy and diarrhoea quite bad. He was up 8 times last night from 11pm-3.30am literally running yo the toilet. He is getting quite depressed and very bored. Did manage to get him out with the dogs for 20 mins but since back his mood seems to have gone very downhill and nothing I can seem to do helps. 

Am I right that the side effects get worse by the day whilst on the tablets and also worse with each cycle?

thanks. Emmarc 

Hi Emmarc ,

That sounds quite rough . My mum’s cycles were totally random . The second and the sixth were the worst but in between not too bad . One thing we did learn the second year was to pace it a bit more . She had just a 10% reduction in her dose that made such a difference to her side effects and quality of life . She had just a good response the second year . She was able to go out and about . The first year was really debilitating so I would maybe have a chat with his oncologist to look at his side effects to see what can be done . I think they prefer to keep it manageable over the long hall than only manage a few.

You could also ask the helpline staff 0808 808 0000.

Even if he knows what adjustments can be made can help in dealing with it . Don’t suffer in silence . My mum did and the second year I felt quite guilty when I realised the difference it made to her .

One other thing to really keep an eye on was dehydration . Particularly if he is running to the toilet . A lot of my mum’s issues resulted from being slightly dehydrated and knocking her electrolytes off. She did not like it too much but we gave her bottled water to sip continuously so we could see her fluid intake . She had a bad hospital admission . They gave  her lots of fluids and potassium which helped her out . After that she stayed hydrated . 

Take care ,

Court 

Hi Court

thanks for that advice, I will speak to the oncologist when we go in for his second cycle. 

As Mark is stage 4, and apologises for my ignorance but this is all so new to us, does it mean that after these 8 cycles he is likely to need another round of them or does it all depend on the results of the scan which will be done at the end of the cycles? 

Also, the consultant has said that he will be scanning Mark every 6 months - is the the norm?

Emmarc