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Nearly 5 years - what would you do?

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Re: Nearly 5 years - what would you do?

Hi SallyLou
I rarely come on here now but felt I wanted to respond to your post.I had my 5 yrs post dx in October[I am tn and did have chemo].I too wondered about scans etc but decided against for many reasons.
1]The stress of waiting for results of tests when I have no symptoms
2]If tiny mets are found there is often minimal treatment but maximum anxiety
3]With tn there is no evidence of early detection/treatment prolonging life.
4]Most oncologists etc wont prescribe scans unless you have symptoms-if ever I have such symptoms I'll be banging on the door.
5]There is no guarantee that a clear scan today means a clear scan next week.
6]There is a lot of radiation involved in a CT scan which added to our annual mammograms can increse risk in the future.
Good Luck in whatever decision you make and congratulations on reaching 5 years-move on and be happy 🙂

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Re: Nearly 5 years - what would you do?

I'd agree, gird your loins and go for it. I think those of us who are not as far from the diagnosis are more accepting of the fact that this inevitable worrying is better dealt with. I've had a few 'talks with myself' that I'd go against life-long habits and any concerns, however small, will have me on the phone getting an appointment. And it has worked out OK so far, the worrying has only lasted a couple of days/weeks, rather than the never-ending eating-away worry that you'll have if you don't.


I've got/had lobular, clear nodes, and extensive LCIS too. Didn't have the bilateral Mx that was recommended cos I read lots of the newer research that said its not so bad as once thought.

I would have thought you'd have at least a 2 yearly onc appointment though.

It would be lovely to be able to 'forget' but probably not best course of action.

Best of luck, let us know how you get on.
S
X

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Re: Nearly 5 years - what would you do?

Well done Sally, I also think it's better to face it. It's very scary, but if there should be something not right it's better to know asap and tackle it.

Lots of best wishes and love from Christine xx

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Re: Nearly 5 years - what would you do?

Thanks ladies!

Kind of knew the general view would be to go for the MOT but also knew that you would understand where I was coming from! Feel a bit guilty feeling like this as I am very aware that there are many ladies on here who would love to be in my position.

I said in my earlier post that my husband agrees I should have it done, but I think it's because he thinks everything's going to be fine - I tried to explain my worries that make me stop going to the GP and he just said he had health worries that he had kept to himself - turned out after asking him numerous questions that he had piles and he knew that's what was up!!!!! Anyway, he's a bit of an ostrich, but then this could be because his first wife died of secondary breast cancer - not much luck, my husband (seriously, he's been great though).

Thank you all for your input - I think Ruby knows exactly how I feel! Going to gird my loins and book that GP appointment and hopefully in a month or two I'll have good news to post.

Thanks again - you've all given me the courage to go ahead.

Wishing you all the best and thank you for taking the time to answer my question.

Best wishes,

Sally

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Re: Nearly 5 years - what would you do?

Hi SallyLou
I completely understand where you are coming from in terms of not wanting to go to the doctor 'in case they find something'. I also know logically as you do and as the others have said that it's best to get checked just in case there is something there that can be treated easily BUT I'm also too scared to do that and it just doesn't make sense does it! I think it's the fear of 'if' they found something we just couldn't cope with it - knowing what we know now. I just remember when I found my lump in 2007 \i knew I was going straight to the doctor having no idea of what was about to be thrown at me and it felt like a ton of bricks and worse. I'm not quite sure what to say to you to make you feel better or what the answer is just hoping that you can summons up the courage to be able to go and see your doctor or a medical person about how you're feeling.
Hugs
Ruby xxx

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Re: Nearly 5 years - what would you do?

Hi Sally

I'm only 15 months post diagnosis; & 10 months since rads completed. I had clinic appointments at 4 month intervals & after my last 1 I have another in 6 months time.

I'm looking fwd to being "discharged" which if all goes well is at 3 years locally; but have 5 years mammo's for the last 2 you are under the care of your GP.

The 1 thing I really think when dealing with all the emotion & worry of going through this journey is if it's worrying you then it needs to be checked to put your mind at rest. If it needs to looked at again you can move forward.

I have to see my GP quite regularly as I'm having treatment for nerve pain & Type 2 diabetes picked up during my pre-op tests for what turned out to be DCIS. I went to see him when I had some swelling in my underarm terrified it was coming back; he was great checked me out explianed it was common after rads. It was a fluid build up (still there but not worried as I took a very deep breath & got it checked)

Take care
Lynne

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Re: Nearly 5 years - what would you do?

Hi Sally. Sorry.
Re read your post and I think I understand why you haven't had follow up. However I'm still suprised you didn't have more.
As far as I'm concerned though it's still a no brainer.
Good Luck again.
Chinook

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Re: Nearly 5 years - what would you do?

Hi Sally
Not sure if I understood. Why haven't you seen anyone for follow up after treatment?
I'm nearly six years all clear and until discharged in May last year I had checks every 6 months and mammograms every year. Every test and check up was a bit stressful but I always felt much better to be given the all clear. I think I'm going to miss that reassurance.
To me it's a no brainer go for the MOT.
Good luck
Chinook

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Re: Nearly 5 years - what would you do?

Hi Sally,
Firstly, well done on getting to nearly five years that's great news! As my siutation is very diffenret, and I'm only 16 months from diagnosis this will colour my response no doubt.

I guess the logic I would use would go like this:

Suppose I go to the GP and have some checks done (and/or a full MOT) what's the worse that can happen? Answer - they find something and they can treat it straight away giving me the best possible long term outcome.

Suppose I don't go to the GP (and/or have the MOT) and something crops up a few months or years down the line, how will I feel then? Will I wish I'd been proactive or will I just accept that I made the choice that was the right one at the time?

Only you will be able to work out what's the right course of action for you, but I think we all recognise the parasnoia that so easily overtakes us.

What will ultimately put your mind at rest? From what you've said probalby to have the checks done. Why not have a chat with your GP anyway, explain how you feel and see what s/he suggests? It might be that the chat will give you the reassurance you're seeking.

Not sure this is much help, but I am sure you will find the right solution for you.

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Re: Nearly 5 years - what would you do?

Hi SallyLou'

I would get a full MOT. If you don't feel well and this is niggling at you, it won't stop. Hopefully there will be nothing wrong and you can carry on getting with your life as you have done for the last 5 years. But its probably better to get it done and either put it all behind you or deal with whatever comes along.

Just my opinion and others may say differently but I think you will just continue to fret and it would be better to know if there was anything wrong rather than just worrying about it.

Good luck with whatever you decide to do.

Wandyx

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Nearly 5 years - what would you do?

Hi,

I don't come on here very much these days as, so the title of this topic tells you, I'm nearly 5 years clear and am now 43.

My diagnosis was grade 2/3 invasive lobular, no lymph or vascular spread but extensive LCIS. My treatment was mx with immediate recon, no chemo (my choice due to good prognosis), no radio and put on tamoxifen.

I have only met an oncologist once, have had one check up after 6 months, but in Jan 2009 had a sentinel node biopsy on my "good" side as part of a preventative mastectomy.

So I have seen no-one regarding BC for three years.

I feel I should go to my GP to refer me for a full "MOT" as it were, scans etc. just so I can "close" everything up and put the whole BC thing behind me and my husband agrees.

The trouble is now everytime I think about doing this I get very scared that they will find something somewhere and then I'll have to have chemo and that really frightens me. I wasn't so frightened when I was first diagnosed as I didn't really know anything back then, but I know a hell of a lot more now. Also, I just don't feel well; I'm sure there is something wrong with me - but then this could just be paranoia - aaggghhh!

So, my question is: do I ask for a full "MOT" (I can go private) or should I just carry on and try to forget it all anyway?

Hope this makes sense and sorry for rambling - would love to hear anyone's thoughts on this.

Sally xx