Hi
Jut been reading up on women suffering from secondaries, and they all seem to be more mature than me…
Just wondering if there’s any younger women out there who are suffering like me too, and what your main thoughts and concerns are?
I’m currently trying to get round the fact that my husband and I may not grow old together as planned… It’s effecting me a lot.
Thanks
Hi Poannie
You may find the secondary live chat sessions on a Tuesday evening at 8.30 pm - 9.30 pm of interest, live chat is Breast Cancer Care’s online chat facility where you can talk to others in real time. It is facilitated by an expert moderator and a nurse who are on hand to point you to sources of help and information. But for most people, the chance to talk to others in a similar situation is what counts, simply use the same login details for both the live chat and the forums.
Kind Regards
Sam
Moderator
Breast Cancer Care
Hello,
How old are you? I am 38. I was diagnosed with breast cancer 10 years ago at 28 and this year was diagnosed with bone mets with spots in my lungs. I have my last taxotere on Thursday and also get the results of my scan to see how well it has worked.
The live chat that the moderator has mentioned is really good. Unfortunately I have started a Tai Chi course and it clashes with the live chat, otherwise I would be there too.
I will be there when the schools are out as my course is in term time.
I know where you are coming from with your feelings towards your husband, I feel the same way, BUT I am trying to remain positive and and determined that I am going to fight this all the way. Not easy at times.
Are you going to the secondary cancer campaign in London on 24th? I am going and it would be good to meet up. There are a few people going from this site.
All the best
Fay :o)
Hi Poannie
I’m 28 and have been diagnosed recently with two bone mets at the same time as my primary diagnosis. How old are you if you don’t mind me asking? What treatment are you having? I’ve had two FEC so far, then once chemo is done it’s mastectomy and radiotherapy followed by tamoxifen.
Hope you don’t mind me getting in touch!
Tish x
Hi Poannie
I am 39, so probably too old, although never think of myself as old, and always forget that I am 39. I have two kids under 4 as well, so probably keeps me young. I was dx in July with bc and told 10 days later had liver mets.
I also worry that I am not going to get old with my hubby or see my babies grow up - and it makes me really sad and depressed, but then hopefully, reading so many good stories on the forums of people who have been there, it gives me hope that I will survive longer than I think.
Take care
Love
Dawn
x
PS. Sorry if am too old, just wanted to comment really.
Hi Poannie
I’m 33 years old, Ive got Lung Secondaries… I was diagnosed May 2005 with my primary BC, I’ve been having treatment for this wretched disease since then all but a few months… i’m getting very tired of it all now and very scared to say the least… I’m on my 7th Chemotherapy drug and hoping and praying this this one will work!
The hardest thing for me is knowing that i’m going to die but not knowing how long ive got, sounds morbid i know but this disease plays cruel tricks on your mind, so i find it hard to plan things when i dont know if i will be around…
I cant bear the thought of not seeing my nephew who i adore (i have no kids of my own) grow up, i just cant imagine not being here to spend time with him.
I really dont think us younger ones with secondaries get the support we need, i cant remember the last time i even saw my bc nurse, unless your faced in the situation yourself, no one really understands your thoughts and fears…I find it very hard when asked about my bc to tell people that i’m now terminally ill for fear of frightening those who have just been diagnosed…
i find this site and the other bc pals site a great source of support… i’d be lost with out it… i’ve also made some great friends through this site who support me tremendously… girls if you are reading… you know who you are…
thanks for starting this thead…
Take care
jakki
xxx
Hi Poanni,
I was diagnosed with primary and lung secondaries in May this year, am 37 and have 3 year old. I agree that the support available to us seems a bit hit and miss-I am lucky as I’m a palliative care nurse and knew the system-it’s still a bit strange atending my local hospice and hoping I don’t bump in to any of my patients!
One of the hardest things for me is trying to keep hopeful but being realistic and sorting out all the stuff you don’t want to like wills etc. My aim at the moment is to get all the financial stuff sorted as much as possible so I can atleast know my husband and little boy will be secure when I’m not here anymore. Saying that, I hope to be araound for some time to come-herceptin and tamoxifen seem to be working at the moment.
India
Hey Poanni
Im 30 and have had bone mets for over a year now, main concerns for me:
Not living to see my 35th bday, not being able to see my family and friends get older and do all the stuff we joked about, lviing everyday angry (unless ive taken my happy pills), worried about finances (easy for people to say i shouldnt be but hard not to when you support yourself (i havent got a pension ive been paying into for 30 years), worried about how all the people i love will cope with seeing me die, dying (big one at mo i normally bury head in sand), feeling like a 70 year old at 30 cause the meds have messed my body up so bad. Staing positive at the moment im on a downer when i m normally fighting with everything i have…i dont want to become that moany person.
Im noramlly quite chirpy and stuff just having bad week. Its a shame they dont have private buttons on this thing so we chat properly or exchnace numbers to talk (moderator are you sorting this out ever??)
Daisy pink you’re right we dont get enough support! Going to Secondary BC thing in london on weds where im going to make my feeling very clear on the whole matter!
Love to you all lynnc x
Hi All
Think I am too old to jump on board here as well - I am 41 - but can associate with a lot of what is being said - so, I hope that you dont mind too much.
I was dx at age of 34 - had lumpectomy, cmf, rads and 5 years of Tamoxifen.
Got married 2 years ago to my ToyBoy of 28 as then.
Got pregnant, had baby boy on 21 aug this year and told that I had bone mets on 23 aug this year (rib and hip/pelvis).
It has certainly been an emotional rollercoaster ride. I too am normally ‘quite chirpy’ but have my low and negative days too.
I am embarrassed to admit that I didnt register in my head about secondaries - I just thought that if it came back, it would be another lump that they could cut away and I could have the chemo etc again.
I have horrible thoughts about not being alive to see my baby’s 1st Christmas or birthday, or 1st day at school.
I have horrible thoughts about my husband being a widower at the grand old age of 30!!! And now, with a baby in tow.
I have horrible thoughts about my husband not being able to afford to stay in our house - my life insurance expired just after original dx 7 years ago, and it was one of those things that you keep saying you will do and keep putting off. So, the only thing that keeps me going there is through my pension, ‘death in service’ gives a good payout - but then, I’ve got to keep working full-time which means less time with my little one. Dilemmas hey?
I feel quite bitter that I am no jet-setter - I dont have many demands on life - People keep telling us to get away from it all. It is so unfair, all I really want is to enjoy a normal family life with my new family. My problem is, I cant guarantee how long for.
I think it would certainly help to be able to have private chats within this site - I’ve just set up a new discussion on secondaries - my questions are silly really but I just need to see if someone out there is feeling the same.
The chat on a Tuesday night is valuable. It is not as busy as I thought it would be, but that can be quite good cos you get to chat rather than wait your turn and but in when appropriate iykwim.
Have got my 2nd dose of Zoledronic Acid/Zometa tomorrow and hopefully my ovaries have stopped working, so may have a prescription for Arimidex too!!
There are a lot of good people on this site - real morale boosters!!! Thank you
Take care
Anne xx
Lynnc
I know exactly what you mean when you say you feel about 70 at the age of 30… i just cant do the things i used to be able to do… like have night out with out almost falling asleep before the pub shuts… my body is just so tired of being ravaged by chemo…
I would of loved to attend that secondaries thing on the 24th in London, but i have more chemo tomorrow and wouldnt be well enough to travel down… please do put our concerns across about the lack of support… let me know what response you get.
take care hun
jak
xxxx
Hi All
I am 35 diagnosed with BC on 13th April then Bone Mets on 31st May this year
I am married to my college sweetheart -been married for 11 years this year. Neither of us have wanted to be with anyone else. I can’t bear the thought we will not grow old with each other and do all the things we promised. We have changed as a couple so much but still close. He was and is my rock
I have a gorgeous 7 year old son who has seen his mum change so much these last few months. I have been so poor;ly with chemo i have not been a proper mum to him -feel so guilty about that and hope he never resents me for it. I want to see him go to senior school, college, perhaps married and grand children. I don’t want to miss out on any of that
My parents are devastated -my dad said ’ it should be us not you’
Its sooo unfair
Best support I have had is from my Macmillan nurse. My breast care nurse has seen me twice whilst the macmillan nurse keeps in touch with me by phone and visits. Nothing is too much trouble for her. She arranged for me to get a disabled badge and the higher level of Disability Living allowance which has eased financial pressure. I don’t feel i need to rush back to work
Can’t make the 24th either -it clashes with my daily rads sessions -three more weeks to go
Jools
Right ladies
List questions you wont me to take to forum on wednesday and ill take them, im annoyed to high hell this week so good time for me to get stuck in and boy can can i talk!
Just ping them on here and ill feed back for sure!
Love to all x
Lynn
I’d like to know -
Does the health service have any figures of just how many of us bc patients have now gone on to have secondaries of the 41, 000 that are diagnosed every year?
Why are drugs such as Avastin being trialed as first line treatment for mets when they could possibly help us ladies who are running out of options?
why is tykerb only being trialed in certain hospitals… again… it should be made available to everyone with mets?
Why as a secondary bc patient have i not got access to secondary bc nurse? only a few hospitals in this country have them?
Why does the media only focus on success stories of women who have “won thier battle” with bc, why isnt secondary bc included in bc awareness month?
why do some hospitals do MRI scans as routine, yet i have never had one? is it down to cost?
Why do secondary breast cancer patients have to pay for prescriptions?
I can not think of any more questions right now and i may be asking the wrong stuff here but thought i’d add my two penneth.
Take care
Love jak
xxx