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Relatives and friends

Spanner

Advice and explanation please.

My wife 56 was diagnosed in march having shown almost no symptoms. The doctors have not been very forthcoming with detail, and I have not been keen to ask too many questions as all meetings, my wife has been present. She is not keen to talk about her illness and has insisted no one outside of us and our two sons should be told. I find this quite difficult, but as its her choice I must go along. I only found out a couple of days ago while reading a discharge letter that her cancer was classified as T4bN2M0 could someone please clarify, does T4b refer only to the size of the tumour or do other factors apply? Also I understand the N means lymph nodes affected but what else?
I guess I am trying to assess in my own mind the extent of her cancer.
Also she was diagnosed with SLE LUPUS at 40 which has been well controlled in recent years. Does anyone know whether the Lupus will have a bearing on her journey?
I hope these are not stupid questions, thanks in advance.

Jomo9

Hi @Spanner there is a really good guide called ‘Your Pathway’ in the publications section of this website. It includes a staging guide which will help you understand the diagnosis. I am a similar staging to your wife and am currently having 4.5 months chemo post op. I can understand why she might like to keep everything in the family to keep a sense of normality. As I knew no-one with bowel cancer I decided to use my diagnosis and treatment to make more people aware of the signs and symptoms.

bowelcancerorguk.s3.amazonaws.com/...owel-Cancer-Treatment-Pathway.pdf

Spanner

Thank you @Jomo9 I will look now. My wife has just started 6 months Capox .
I wish you all the best in your treatment.

DianeS

Good evening @Spanner and welcome to our lovely forum. So sorry to hear of your wife’s diagnosis, I was 57 when diagnosed, and I know what a shock it will have been for you all. Please read our publication as suggested by @Jomo9. Everyone’s cancer is unique, therefore treatment may vary between individuals. I understand M0 means that the cancer has not spread to other organs, but I think the more experienced members will be able to advise you better than me. I don’t know anything about Lupus, but we do have our nurses that may be able to help you regarding this. Please never feel any question is stupid, we are all here to help each other, and you must ask to help understand your wife’s position. Thinking of you and your family Diane :x:

Spanner

Thank you @DianeS I have read the publication and it has clarified things for me. It is more detailed than the Macmillan booklet.

Baxter2

Hi @Spanner and a very warm welcome to the forum.

I've just read your profile and It sounds like it's been a pretty rubbish year for you both. Now that chemo has started, it's pretty unfortunate that she's having troublesome side effects. These are however, quite common and it's often trial and error in finding solutions to them. Try using the little search icon to find previous posts and comments about treating side effects. I hope they improve for her. I had this treatment initially and remember similar side effects too.

I'm glad you've got some clarification on the staging of her cancer and I'm sure she will find that helpful too. Everyone reacts differently to their diagnosis and I'm sure she has good reasons to keep this news to your immediate family only. I'm not sure how you feel your lovely wife is coping with it all but if you think she's struggling or could benefit from additional support, then there's help available. She could discuss things with her GP and if there's a nearby Maggies Centre, they have lots of support available. There's also online Maggies. Another great source of support is Penny Brohn but it may not be near to you. Again, you could check out their website.

I do hope you can all enjoy Christmas as a family and just wanted to send you all my love very best wishes.

Karen💛💜💚❤️💙

Sasa

Hi @Spanner , as the loved one of a cancer sufferer, I would urge you to talk to your lovely wife about telling people, especially for the sake of the kids... you will know already how dreadful it is to manage being the person that has to watch a loved one go through all this treatment and it is no less stressful for them.

I am sure you know this anyway, but school would definitely be glad to know, and the kids must be terribly worried, and need to feel able to talk about that to someone ‘neutral’. They may feel they don’t want to upset either of you by saying anything...

Hope you don’t mind me saying, but I work with children and , believe you me, if they can imagine the worst imaginable outcome, they will! Bless them!

And, of course not forgetting the stress it puts on you! It is your journey too.

Sarah :x:

Mrs2017

Hi @Spanner , my husband had the same classification as your wife and also had 6 months of capox as follow up treatment, he started his last Christmas , finished in June so is one year ahead of your wife. Although he has no problem talking to me about things he also did not want anyone outside immediate family to know, how we managed this over his treatment I don’t know but we did and as you say as it was his choice I felt I had to support him on this. Saying this I was able to talk to close work colleagues who have no connection to him and my two children although they are in their 20s so not young ones and also used this site for support. All the best. Chris :x:

Spanner

Thank you all for your kind comments and advice. Silly me I should have said our sons are 27 and thirty, so no school. I do however feel it is difficult for them, our youngest son is very supportive and of course very worried about his Mum, but the older boy has addiction issues so seems incapable of showing concern for anyone other than himself.
My wife starts her first week without capecitabine on 27th so is really looking forward to a med free week. Isn't it strange what we find comfort in when lifes challenges strike?
I hope you all have a good Christmas.

Tiffany

Hi @Spanner.

So sorry to hear about your wife's diagnosis. When my hubby was diagnosed he pretty much left everything to me so I was the one who found this forum, did all the research and asked all the questions. He just let me run with it. Have to be honest I am not sure that we could have hidden it from friends and extended family but Mike had been feeling quite unwell beforehand so everyone knew there was something going on. I guess you have to follow your wife's wishes for now - she may change her mind down the line.

You ask about staging but that may now have changed as your wife has had an operation and active treatment.

Oxy is pretty horrible - my hubby was on FolFox for 6 months and had some of the side effects you mention but he did get through it! He is now showing No Evidence of Disease - something that I never thought I would be able to say.

I'm thinking of you both through these hard days and hope you will have a better 2019!

Love Tiffany :x::x: