terminal.....thanks very much!!

Hiya all.

Im new to the site as most will tell!! Im 37yrs old. And yes Ive been given the big T diagnosis in dec 07, having gone through all of 07 having treatment for the primary diagnosis. What Id like to know is… are there any others here who are in a similar situation to me?

Im finding it very hard to find anyone to relate to or with, as all the forums Ive been in have no-one with the same diagnosis as me (the ones Ive viewed so far that is).

I dont want to scare any other people here with my diagnosis, as I can see there arent many discussions or other postings that Ive seen so far that relate to me.

Im not looking for too much, just maybe a chat that only we could understand.
So I know what Im thinking and feeling isnt just me letting my mind run away with me.

All replies welcome, preferably nice though eh!!!

Thanks Gem

Hi Gem,

Welcome to the forums, I’m sorry you are having a difficult time at the moment. There are a couple of Breast Cancer Care’s support groups you may find helpful.

Firstly, there’s the telephone support group . The aim of the group is to give you the opportunity to talk privately and confidentially to other people around the UK with similar experiences.
Discussions cover issues such as coping with the impact your diagnosis has on your life, relationships, returning to work, money, as well as other peoples’ expectations of you.
The groups are completely free (we pay for the phone calls) and as long as you have access to a phone and have a quiet private place from which to call, you can join us from anywhere in the UK.
For more information telephone 0808 800 6000 or email <script type=“text/javascript”>eval(unescape(‘%64%6f%63%75%6d%65%6e%74%2e%77%72%69%74%65%28%27%3c%61%20%68%72%65%66%3d%22%6d%61%69%6c%74%6f%3a%74%65%6c%65%70%68%6f%6e%65%73%75%70%70%6f%72%74%67%72%6f%75%70%73%40%62%72%65%61%73%74%63%61%6e%63%65%72%63%61%72%65%2e%6f%72%67%2e%75%6b%22%3e%74%65%6c%65%70%68%6f%6e%65%73%75%70%70%6f%72%74%67%72%6f%75%70%73%40%62%72%65%61%73%74%63%61%6e%63%65%72%63%61%72%65%2e%6f%72%67%2e%75%6b%3c%2f%61%3e%27%29%3b’))</script> .

Alternatively there’s the Peer Support Group, again this is a telephone support service which aims to quickly put you in touch with one of our trained peer supporters, who has had a personal experience of breast cancer. Our peer supporters are from diverse backgrounds and ages and have experienced different types of breast cancer and treatments. They are ready to listen, offer skilled emotional support and share their experiences and understanding. For more information about this and other support available to you telephone our helpline on 0808 800 6000or email: <script type=“text/javascript”>eval(unescape(‘%64%6f%63%75%6d%65%6e%74%2e%77%72%69%74%65%28%27%3c%61%20%68%72%65%66%3d%22%6d%61%69%6c%74%6f%3a%69%6e%66%6f%40%62%72%65%61%73%74%63%61%6e%63%65%72%63%61%72%65%2e%6f%72%67%2e%75%6b%22%3e%69%6e%66%6f%40%62%72%65%61%73%74%63%61%6e%63%65%72%63%61%72%65%2e%6f%72%67%2e%75%6b%3c%2f%61%3e%27%29%3b’))</script>

I hope this is of some help to you, and I am sure the many informed users of this site will also give you much needed support.

Kind regards,
Jo, Facilitator

Hi Gem

I am so very sorry to hear of your diagnosis, there are no right words I can think of that will help you Gem, as you rightly say it would be helpful for you to talk with somebody who can understand as closely as possible what you are going thru. I am 9 weeks post op from mast and am so very lucky to have a good prognosis.

I just wanted you to know that you are not on your own, sadly there will be others going thru the same as you and I am sure that they will post soon. In the meantime,

Smile at the rainbows, feel the rain on your face
Laugh as cold winds blow or at soft fluffy snow
Feel the rays of the sun, smell roses in a lovely place
Listen to the songs of birds in the trees
Remember and enjoy all fond memories

Take care Gem, luvnhugsCarolexxx

Hi Gem,

Right now you must feel in a very lonely place - I know you say you don’t want to scare people here with your diagnosis. If you can’t tell it here then you won’t find anywhere. It is what these forums are for - so that you can tell it how it is. May I suggest that you also post in the Secondaries Forum here. I know for a fact that there are several members with secondaries who are your age and younger and who are so supportive. I am not one of the younger women - being 63 now. But I was originally dx when I was 45 and have had secondaries for over 5 years now.


Hi Gem
I can sympathise with you -I am 36 and got primary and secondary diagnose - yes the big T within a month of each other last May
I still am finding it hard to accept that I have something that is terminal and feel heartbroken that I am potentially going to be leaving my young son without a mother and my husband without a wife
I have been through chemo and rads last year and am currently on tamoxifen
I have been going to my local hospice twice a week for complementary therapies which are helping and also having counselling
I take heart from the fact that my secondary cancer has not grown or spread over the past year since diagnose and hope that it carries on this way
Please post on secondary forum and also try and come on the secondary chat on tuesday evenings
You are certainly NOT alone -we are all here for you
Jools xxx

Hello Gem, I’m so sorry to hear your news…agree with the others please post in Secondaries, there are many young women with secondaries and you will find much support from everyone there. I’ve been terminal since 2003, I’m in my 40’s and I feel really well. Good Luck with your treatment.
Love Belinda…x

Hi gem
So sorry to hear your devastating news. There are a lot of us here who are young and terminal. I’m not so young as I’m 46 but my children are 10 and 7.
I was diagnosed in April 05 and developed secondaries in sept 05. I have been on almost continuous chemo since diagnosis. I’m hormone neg so the hormone treatments are not an option for me. I am herceptin pos and been having that since oct 05 but still my secondaries keep growing.
Until recently, I have been quite well and despite having chemo, I have managed an active life - well - within limitations of my disease.
The current chemo is really hammering my bloods and I have no energy and feel very scared for the future but I have lots of help and support from family and friends and from the hospice.
If you have not been referred to the MacMillan or hospice service, please make sure you do as they give you a brilliant opportuntity to talk and express your fears and can put you in contact with charities for money or other help and support, like Disability Living Allowance.
I don’t know if you have children but it is best they know as much as they are able to understand and keep the schools informed.
‘Terminal’ seems to cover a huge area of the disease. My area are very keen calling it ‘palliative care/chemo’ until you reach a point where you are untreatable. If you had chemo last year and are on your first lot of hormones now, I would think you have many options of treatment left.
I would really encourage you to post on the secondary forum - you don’t say where your secondaries are or else i missed that part - there are lots of threads referring to different secondaries.
I have 2 types of lung secondaries - solid and in my lymph system in my lungs and in my lymph system in my right armpit and in my body. I also have bone secondaries and a little liver one so have had radiotherapy for my bone pains which has helped enormously. The chemo has always helped me whilst on it and gave me back my quality of life and didn’t have the horrendous side effects of FEC and Taxotere.
I hope I haven’t scared you but I’ve had over 2 years with a terminal diagnosis and there are many people here who have been well for much longer. Please feel free to PM me if that would help and I’m sure the others would feel the same.
It is all such a shock isn’t it? i rememebr thinking I’d never get my head round it. I am very sad I will die young and won’t see my children grow up but at the same time we have had some wondrous moments that I hope will give my children and family and friends good memories to hold on to. I can not get angry but I know a lot of people do and it is all quite normal.
Please post here again or secondary forum and do PM people - you are not alone.

Hello Gem
Sorry to hear your news. My wife has just been diagnosed with Secondary cancer in Liver (Jan 07) after primary cancer diagnosis around March/April 07, Mastectomy + Chemo + radiotherapy since. She is 44 and we have 2 young children and we’re struggling to take it in!! As others have said the threads on the secondary breast cancer category are the place to be. It’s helping me and I hope it’ll help my wife once I encourage her to view this site.
Take care and best wishes,

Hi Gem - just wanted to reiterate all that has already been said. Many of us are leading very good lifes with our terminal disease. I was diagnosed last year with lung secondaries at the same time as my primaries. However, chemo shrunk the breast tumour and lung tumours and Tamoxifen is keeping the lungs at bay. I am due to have surgery on my boob at the end of February - despite being told that it would almost certainly never occur.

The secondary forum on this site is great - you will be so supported. If you get the chance to go to a Secondaries Event - I thoroughly recommend it - it is so good to put names to faces - we all have so much in common…

Much Love

Hiya all

Thankyou all for your responses, they are very much appreciated.
Its a horrble thing to admit to in a way, but its good to know that Im not as alone in my thoughts as first believed, and that perhaps my life expectancy also isnt as short as Ive been imagining it to be. We think too much I suppose that sometimes we miss the obvious.
My background is as follows:- found lump in left breast in july 06…mastectomy apt at end of oct 06…(yes you read correctly, three mths to apt even though Id had prior ‘leakage’ from both breasts)…diagnosis 4/11/06 metastic hormonal 5cm tumour(by that time due to more growth) grade 3…mastectomy 4/12/06 with full node clearance and expander implant inserted at sametime…all 11 nodes infected…EPI + 5FU chemo Feb-Aug 07…5 wks radio to breast,armpit and left shoulder lymphs…approx three wks Arimidex…then chest infection investigation revealed very new secondaries of 1cm tumour in right lung and two slightly smaller ones in liver…asked onc outright prognosis and he told me terminal…currently on Gemtaxol since 14/12/07. This chemo is kicking me to shreads, sailed through the first lot though thankfully.
I have a 17yr old son, who is just as teenagereish as he ever was before, and Ive been with my boyfriend for 8yrs this May, though we dont live together(my choice!!).
I will try the secondaries forum as suggested by most of you, thankyou. I thought thats where I should post initially but opted here instead.
I hope to interact with you all there too.
Im still quite new to forums in general so please forgive me if I dont do or say certain things that I should in these situations.
I sincerely wish all of you, patients or carers, the very best with your situations, and pray wholeheartedly that a cure will arrive before any of us miss the chance to use it.


Hi Gem,

My heart goes out to you at this dreadful news. I can empathise even though I am not in your situation at the moment - but who knows! Be assured you can post anything you want here - including howls of rage, and someone will always reach out to you. Others more eloquent than I will put it better, but we’ll all be listening and sending good vibes to you - as much as you need.

Lots of hugs

HI gem

Just wanted to send hugs and support whatever I can over the internet - prayers are good - so is anger - frustration - swearing - drinking - laughing - crying - whatever emotion you are most certainly allowed it.
I’m waiting for an MRI scan and the outcome so not in your position as yet but - none the less- my thoughts are with you and your son. Mine is 19.
Lots of love Diane x

Hi Gem

I am so sorry honey about your diagnosis. As you think you are recovering things just come back and kick you in the teeth. I have just posted my 1st posting on this site. Never been on it before. I had breast cancer diagnosed March 05, reconstruction, major infection, then further reconstruction all by the end of December 05. Thought I was over the worst of things, apart from a hysterectomy July 07, only to find out on Friday gone, that there are a couple of suspicious areas on my liver, it says metastases cannot be excluded. It’s got to be discussed Wednesday at the MDT meeting and I will possibly have MRI or CT to investigate further. I am 51 with two teenage sons, the youngest 15, and I am terrified for them, more so than myself. I divorced from their father three and a half years ago, just before the breast cancer was diagnosed. However, we are still close, and he would just move into my house and take over, should anything happen to me. I spent Friday and Sat convinced that was it, then have been upbeat since, but today I have gone chronic backache and a pain in my side, so don’t know what to think. I do also suffer from quite bad IBS, so I don’t know what symptoms relate to what. I can’t begin to imagine how you must feel, I know how I feel and nothing is certain at all, so all my love and best wishes go wholeheartedly to you.

Hello Gem,
Just wanted to say hi and sorry you’ve had to join us. You must be reeling.
I’m 44 and was diagnosed last March with a primary and a liver secondary. I have 3 kids aged 9-17. Sounds like you’ve started to find your way around the secondaries threads - we are a friendly bunch and give each other a lot of support. You can ‘be’ however you feel on here.
Just a technical point. My understanding was that once you have secondaries your cancer is termed ‘incurable’, but they can still treat it to slow it down and reduce the symptoms (sometimes for a very long time). Only when they have run out of treatment options do they call it ‘terminal’. I am sure that is what my Onc told me, but can anybody else clarify the point?
Just thought it might make you feel better?? hardly!
Anyway, hope to see you on other threads and hear how you are getting on
Jacquie x


So sorry to hear your news. I think all of us who have been through diagnosis live in fear of the T word - I am 15 months clear but still terrified at times, and often imagine what it would be like. Make as much space in your life for you as you can - be selfish and put yourself first. My heart goes out to you. I can’t offer much advice but hope you find people who can help and understand here.

A x

Hi Gem

So sorry to hear your diagnosis i am 41 with two kids 21 and 15 i was diagnosed straight to stage 4 mets to the Liver in May 06 been on A/C x 6 Taxotere x3 this shrunk the lump in the breast but the Liver progressed, then went onto Xelodia for x6 and the Liver spots shrunk i am ER/PR neg and HER 2 POS so i have been on Herceptin only since last May. recent scans show slight progression so about to start a clinical trial.
All this said i feel very well and have done throughout my treatments and have worked throughout. i found Xelodia a very easy chemo and have really enjoyed my 8 month chemo break.

Love to you.

Hi Gem,
Your not alone although it can feel that way. I was diagnoised 8 years ago with primary and secondary cancer. Have just had to alter my meds because of progression but I’m still here and doing most things.


hiya all

Thanks again for all of your fond wishes and advice. I do feel strangley different over the past two days since this my first posting. I think its because Ive found out from your comments that I very likely will see my son turn 18yr old this year, and very hopefully turn 21 too. Before posting I was convinced that id be lucky to see my own birthday in May. Im still scared I might not, but that fear has been reduced significantly now. Im so glad I found this site just for that, and hopeully for so much more in the furure.
In response to your comment jacquie(aka Jacksy), my onc’s response to my direct question ‘does this mean Im classed as terminal?’, was ‘‘for insurance purposes yes, though we oncologists do not use this term until there is no more we can do medically to prolong survival’’, and adding that ‘it’ will keep returning until that time. No matter how he or anyone else puts it, logically I find that I will eventually die through cancer or a condition bought on because of it, and to me thats means its terminal. Im sorry if your views are different or that you’ve been told otherwise, but thankyou for your well wishes and posting response. I too hope that I will have the chance to converse with you and everyone else some more on this site.
I wish you all hope and happiness.

gem x

Hi Gem

Just caught up with this thread, as not been on much over last few days, after my appoint. with liver specialist on Friday was not the good news I wanted.

I am 39 years old (actually 40 very soon) and have 2 children under 4. I was dx with bc and liver mets ten days apart last July and it blew my world apart and I was sure that I would not see my little boys first birthday or christmas etc. The word terminal is awful, and thankfully non of us really know how long and hopefully with todays medicines we can keep going longer. I aim to try to keep going to see my babies grow up.

There is a thread going in the secondaries forum called anyone else with liver secondaries, great bunch of us on there and we have recently met up for the first time. Join in and hopefully we can hold your hand along the way and make you smile and laugh too.

Take care and thinking of you

Hi Gem
Just wanted you to know i am thinking about you and all the amazing women on this discussion.Take each day as it comes saw a notice in Cyprus once many years ago that said .Today is a gift thats why it is called the present.
Much love and strength to you and all your family
Kate xxx