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Oh help - newly diagnosed with secondary cancer

29 REPLIES 29
muddy2
Member

Re: Oh help - newly diagnosed with secondary cancer

Hi
Just wanted to say how i empathise with you. I am 39 have two gorgeous boys age 13 and 10 and I look at them and wonder how they will cope when I die. I was diagnosed with secondaries in Feb this year (primary in June 2007) so not much of a break before my bad news.
I go to my oncologist too scared to ask questions as I cant face the truth.
I will say that life does take on a normality. It has to when you have young children. My boys dont know my caner has come back - I want them to enjoy life as long as we can before I have to break their hearts.
Hang in there.
MuddyXX

scottishlass
Member

Re: Oh help - newly diagnosed with secondary cancer

Hi Kirsty, Just wondered how you were doing really. I am on chemo at the moment and am rather tired a lot of the time. But I wanted to let you know that I was diagnosed with secondaries 10 years ago in my spine, ribs, sternum and pelvis. I have been having different treatments over this period, inluding bone stenghtening drugs, hormone blocking drugs and occasionally chemo. My prognosis was not good. I firat had BC 20 yeras ago when I was just 39, followed by secondaries 10 years later. But I am still here thanks to the advances of modern medicines....and I hope you will be here for years to come too, much love Val Xx( Scottishlass)

katiebelu
Member

Re: Oh help - newly diagnosed with secondary cancer

Hi just wanted to wish you luck with your treatment. At the beginning of August I was diagnosed with secondaries in the lung, liver, spine and hips.

Since starting treatment I feel a lot better (I am on taxol weekly, and herceptin and bone chemo every 3 weeks). My liver is still swollen but things are improving.

Like you I take hope in the fact that many people on these forums have had secondaries for years and are doing well, so hopefully we will be the same.

Best wishes, Jackie X

jaynemh
Member

Re: Oh help - newly diagnosed with secondary cancer

Hi Kirsty
yes good luck starting the treatment - by the way I had the runs on taxol not constipation ...but Debs is the forums resident expert on constipation - so you know who to turn to!!!!!! Jayne

debsincornwall
Member

Re: Oh help - newly diagnosed with secondary cancer

Hope all goes as well as it can today. Listen to your body when you think you may need to rest do. Drink plenty of water and above all else try not to get constipated.
Love Debsxxx

KirstyWL
Member

Re: Oh help - newly diagnosed with secondary cancer

Hi I can't tell you how much all your words have meant to me over the past week. I start chemo in a couple of hours time - I am having taxol weekly. I am feeling half positive that it is something to do to fight this thing and half really wanting to run away and be an ostrich with my head in the sand. The fact that all you have been here and a still wriggling (as we say in my house) means I feel strong enough to get through each day. I am getting there emotionally. Still upset and as you all say, that will happen from time-to-time anyway. Went out to the cinema yesterday evening with hubby, mum and friend and saw Julie and Julia which was really good idea - stopped me comtemplating my fate at home. Starting to get back to normal and accepting all and any offers of help as recommended by you, especially with the kids. A friend makes a meal once a week, my mum is staying with us tonight and tomorrow, mum-in-law has been sorting out my freezer and cooking up lots of family meals. Thank you all so much.
Kirsty x

bluejules
Member

Re: Oh help - newly diagnosed with secondary cancer

Kirsty I have just seen this post as I havent been on this site for a little while. I know exactly how you feel I can remember great waves of anxiety and feeling incredily sad when I was diagnosed. I am 50 and my daughter is 18, and I am finding it hard enough it must be desperately distressing at your age and with young children. But only 2 months on and I have gone back to work and have found some perspective and like you say some days I can laugh and enjoy the moment.

I am sure things will get better for you.

Best regards

Julie x

belinda
Member

Re: Oh help - newly diagnosed with secondary cancer

Hi again Kirsty..I agree, so much, with Celeste's post, it really is such early days for you. I have never asked the direct question 'how long am I expected to live?' I know so much depends on how I respond to various treatments and I've surprised myself that I feel so very well 6 years on from my mets diagnosis.
I choose to keep up to speed with information, well I try to, as I think, for me, knowledge is power and I'm lucky I have an Onc who discusses options with me and makes me feel I've had an input, a choice in treatments.
Some people don't want to know too much, others want to know life expectancy and much more...whatever you feel comfortable with is right for you. And you can always ask more at a later date or decide not to seek further information if that suits you better.
Good Luck with your chemo..I hope it works really well for you.
Love Belinda...xxx

celeste
Member

Re: Oh help - newly diagnosed with secondary cancer

Hi Kirsty,

This is very very early days, so it's hardly surprising that you are feeling the way you are.

All of us cope with this in different ways some of us want all the information we can possibly get, some of us don't and there are the toe dippers in between. There are no wrong responses.

What chemo are you having, - all the women on this site have been through various stages of bc and run the whole gamut of treatments, - there is an awful lot of knowledge on the site, which may get you through various phases of treatment.

The only advice I think we all would give is accept every offer of help you can.

Best wishes

KirstyWL
Member

Re: Oh help - newly diagnosed with secondary cancer

Hi all Feeling a bit panicky tonight. Don't know why. Got upset at bathtime again but managed to put the kids to bed. Hubbie has gone out to the gym - he needed it desparately. Sometimes I feel I am going to live for years, at other times, next week seems a long way off. Still doing better than this time last week when I was taking a sedative in hospital! Got my first chemo on Thursday and seeing my onc - not sure what to ask as I am not sure I am strong enough for the answers. I am finding I am really jealous of everyone else - especially when they get to see the children grown and I probably won't. Still feels unreal. Thanks for all the words of encouragement tho'

Kirsty

Groove
Member

Re: Oh help - newly diagnosed with secondary cancer

Hi Marilyn

Thank you for your advice, reading through these forums has been a great help as you realise it may not be as bad as you first think when hearing the diagnosis.

Thanks again, and I am sure you will hear from me again after next wednesday, when I will have a better picture.

Take Care
Sarah
xx

Marilf
Member

Re: Oh help - newly diagnosed with secondary cancer

Hi Groove

So sorry to hear about your Mum's recent BC + mets diagnosis -- you must both be reeling with shock at the moment. I've been living with BC for over 12 years, and with bone & liver secondaries for almost six years, and, like others who post on the Secondaries forum, I've had various treatments during that time.

There's a lot of information here on the Breast Cancer Care (BCC) website that will help you to ask the relevant questions when you meet your Mum's oncology team, although you might find you're getting too much info, too quickly. I would suggest that you ring the BCC help line (which you'll find at the top of this page) to speak to someone who can answer your questions and point you in the right direction for the information you and your Mum mightneed right now.

There are a lot of different types of breast cancer, and we all respond differently to both the cancer and the various treatments available. Your Mum's oncologist will be able to answer your questions, and will be looking to devise a treatment plan that reduces her pain and gets her more mobile again.

Please do keep in touch with us for your Mum's and your support -- that's what our forums are here for.
Marilyn x

Groove
Member

Re: Oh help - newly diagnosed with secondary cancer

Hi

I wonder if some of you could give me some advice, my mum is 70 and has just been diagnosed with Breast Cancer and secondary bone cancer, she did not know she had it, so has not had any treatment, although for about the past 3 months she hasnt been able to walk, and had been given treatment for Sciatica. I am going with her to her first oncologist meeting, and just wondered if any of you had any advice, or questions that I should make sure I ask, I have thought of the usual ones but as most of you have been through it I thought you may be able to offer me some invaluable help.

ripley
Member

Re: Oh help - newly diagnosed with secondary cancer

Hi Kirsty

I'm really sorry to hear of your secondary diagnosis. It beggars befied that someone with the fitness to compete in a Triathlon could have mets lurking in their lungs and sternum.

I totally empathise with the overwhelming shock. I was a gibbering wreck when I was diagnosed with liver & lung mets from the off 18 months ago, just after my 40th. I just wanted to curl up and die. Everything seemed so bleak. Then I woke up and started to mobilise in preparation for the oncologist appointment to discuss my treatment plan. I bet he wasn't expecting 8 (typed) pages of questions! I had an excellent response to my first regime with 50-80% reduction in size and my team's objective has always been to attack the cancer, achieve stability and manage any symptoms.

I'm sure that you will find comfort and support from the gorgeous women living with secondaries on this forum. It's certainly a bumpy ride for us, which we're all driving at different speeds in a wide selection of cars. I hope that once you have a treatment plan in place you will feel better than at this point now where it's kind of like a freefall without a parachute.

love & hugs
xxx

BoneyL
Member

Re: Oh help - newly diagnosed with secondary cancer

Hi Kirsty

So sorry you have had this devastating news, but you will learn to live with it. I remember when I was diagnosed with bone secondaries (2 yrs 9 mths ago) I thought that I would never smile again, and like you, putting the children to bed was heartbreaking, thinking that one day they will have to cope with my death (I have a 10 yr old boy and 7 yr old girl). Although this is still an issue for me, I realise now that there is a lot of treatments to try and new treatments are being trialed that we have to hope that we can be kept going for years, and with a good quality of life. I hope that the chemo works well for you and that you can be kept stable for many years to come. We will support you as much as we can.

Best wishes
Linda

celeste
Member

Re: Oh help - newly diagnosed with secondary cancer

Hi Kirsty,

I'm not sure I have anything to offer you that hasn't been said already. I have secondary bc in my spine. I remember being told I had secondaries, - altho I'm not sure I knew exactly what it meant at the time, I knew I literally couldn't speak, I was so shocked. I won't lie there have been time when I have cried for a week, and felt such utter unremitting sadness.

My children are now five years on from my initial diagnosis and just last week the last of them left to go to uni. It has been a terrible time for them, but they are also an awful lot stronger because of it. I've been away for the weekend in our campervan with my husband and just sitting by the Dorset coast on a beautiful day, I felt completely and entirely happy, - I also wondered how on earth could that be given my diagnosis, but nevertheless, it's true I was, and I'm also sure that you will feel this too, not now, and certainly not when you are undergoing chemo (if you do), but there will also be days again when you will be happy.

I wish you the very best in the coming days, weeks and times ahead, none of us thought we could cope with this, all of us have found a way, as you will. Take very good care.

carolinew
Member

Re: Oh help - newly diagnosed with secondary cancer

Hi Kirsty

I am really sorry to read that you have been dx with secondaries. It is such a shock to be told this isn't it?
I was dx with secondaries straight off in March 2007 to my liver lung(pleura) and lymph system. I was told that I ought to get my affairs in order as I would probably only have 4 months left to live if the chemo didn't work.
Well after a course of FEC chemo, Taxotere and now on Xeloda I am still here. I lead a relativeley normal life and I am able to walk wuite a way and do quite a lot of things. The only thing I have a problem is with the lymphatic system in my left lung which is causing a lot of pain but apart from that not too bad.

You will find that it will take quite a while to come to terms with the dx and there will be lots of days that you just feel like crying but they do get less over time. It is birthdays, christmas etc that are always worst and milestones for the children that you think that you will never see.

Just give youself a bit of time
take care
Caroline

Sam_BCC
Member

Re: Oh help - newly diagnosed with secondary cancer

Hi Kirsty

I am sorry to read of your secondary diagnosis.

As well as the support you are receiving from the other forum users you may find BCC's secondary resources pack helpful. It has been designed for those newly diagnosed with secondary breast cancer. If you would like a copy just follow the link below:-

http://www.breastcancercare.org.uk/upload/pdf/bcc_secondaryrespack08_web_0.pdf

I hope this is helpful.

Kind regards
Sam (BCC Facilitator)

KirstyWL
Member

Re: Oh help - newly diagnosed with secondary cancer

Thank you all for your comments and hugs. It is getting easier. I've almost made it through today without crying. I am still feeling sad, but the chemo starts on Thursday and I am at least eating properly again. Never thought I would have to eat to put on weight! The fact that so many of you have lived with this diagnosis for years has given me a lot of courage to hope again. Its funny but its the little things I want to do - bathtime and bedtime with the kids, reading a story or just enjoying a silly TV programme together - all the things that I guess I took for granted before. I expect I will have bad days but we made it to the park with the kids today and although I felt a little tearful it was ok and we actually were laughing. It felt good. Thank you for your support, it really is making a difference.
Kirsty xx

Bex1
Member

Re: Oh help - newly diagnosed with secondary cancer

Hi Kirsty,

I am so sorry to hear of your secondary diagnosis.

I was first diagnosed with secondaries in 2005, I was 31 and my son was 3. I don't think I truly grasped what was happening at the time, it hit me later on and I remember thinking I wouldn't ever stop crying. I felt cheated out of a life with my husband and son, and just incredibly sad that they had been cheated too. I still feel that way of course, but I have learnt to cope, just as you will, and although I still have my occasional 'crises' (as I like to call them - times when I just need to cry and rant), I let that happen then I get on with the rest of my day as best I can. Then I don't have another one for a while.

The only comfort I can give is that on this forum, you will not only find support, sympathy and understanding, but also find lots of other women who have lived relatively 'normal' lives for a long time after secondary diagnoses, which I found to be so encouraging.

As Debs and others have said, once you have a treatment plan you will feel much better.

Lots of love and hugs
Bex

debsincornwall
Member

Re: Oh help - newly diagnosed with secondary cancer

Hi Kirsty,
I promise once you get a treatment plan you will feel a bit better. It is such a shock when we hear the word secondary you sort of see your life flash in front of you. My children are grown up but it still gives me great sadness to know they will lose me prematurely. My secs were diagnosed May 2004 and you just think this is it the end but it isn't. You will have bad days and also many good days, just learn to accept all the help that is offered. You will get an awful lot of help and support from the forum so use us when you need us.
Love Debsxxx

KirstyWL
Member

Re: Oh help - newly diagnosed with secondary cancer

Hi all
Thank you so much for responding so quickly. It does help to know I am not alone although I wouldn't wish this on anyone. Today has been busy - we have invested in a laptop so I can still communicate with you and others from the comfort of the settee. I am still recovering physically from the crisis but just had a lovely massage from my sister-in-law. I can actually stand being in a room on my own for a short time without going into a flat panic. Still tearful, especially at the children's bedtime but at least feeling like I am going to see Christmas. Good night and god bless.

Kirsty xx

Trixie
Member

Re: Oh help - newly diagnosed with secondary cancer

Hi Kirsty

So sorry to hear your news. At the moment I imagine your head is spinning and it is hard to take in the diagnosis - I know that is what I was like.

I had a lumpectomy in 2002 and lymph nodes removed, given all clear beginning of January 2008, and I was diagnosed with secondaries to lungs and liver in April this year. I was totally devastated - had not even heard of secondaries!

There are so many treatments out there, and you will feel better once you have a treatment plan and know something is being done to help you.

The ladies on this site are lovely, and I have received such a lot of help and encouragement - I am sure you will too. It is encouraging to know you are not alone, and we all know what you are going through.

Wishing you all the best, and good luck with your treatment.

Trixie x

jaynemh
Member

Re: Oh help - newly diagnosed with secondary cancer

hi Kirsty - so sorry you are here with us - you need to give yourself loads of time for this to sink in..... I have secs in lymph, bones and liver - diagnosed a year ago - its been a hard year - ups and downs - when i was diagnosed i felt i was lost.... and had no compass! i suppose we all find( or try to find) a way through this shi* ..... think once you get a treatment plan it might help - meanwhile take care,- there are many very supportive women on this site - we help each other - i have found that really helped me over the year , love jayne

india1
Member

Re: Oh help - newly diagnosed with secondary cancer

Hi Kirsty,
so sorry you have had this news. I was diagnosed with lung secondaries 2 years ago at the age of 37, and can remember how devestating it was, particulalrly as my son was 2. He is now 5, and most of the time I get on with being a mother and enjoying life as much as possible. Be kind to your self and except any help that's offered. Whilst I can't say it gets easier, I think we all find ways of coping, including this forum.
Take care,
Nicky

juliet66
Member

Re: Oh help - newly diagnosed with secondary cancer

Dear Kirsty,

I am sorry it, is awful. I know how you feel and so do lots of other women.

I was diagnosed with secondaries about 18 months ago. Believe me lots of other wonderful women will post and help you to cope.

Things get a bit easier once you get a treatment plan. It is truly hard with children but you just have to try to craete a new normal.

Julie x

belinda
Member

Re: Oh help - newly diagnosed with secondary cancer

Dear Kirsty, my daughter is grown up but many here have young children and you will find all the support you need from others in the same boat and everyone else here. Somehow you will find the strength to take stock and move forward..it takes time, it's such a big shock, but we all find our own way of coping and living our life with secondary cancer.
I was diagnosed stage 4 from the beginning, bone mets, in 2003. I've had good responses to treatment and I feel well 6 years later..I wish you well with your treatment..Love..Belinda..x

Blackheath
Member

Re: Oh help - newly diagnosed with secondary cancer

Oh poor you, Kirsty, the news that we all dread... (I was diagnosed a bit after you.) Just to offer my very best wishes for your treatment. And I hope you're getting all the support you need. How amazing to have done a triathalon - being so fit's got to help with chemo.
Good luck and cyber hugs
xx

jantharra
Member

Re: Oh help - newly diagnosed with secondary cancer

Oh Kirsty, I am so sorry you are in this situation. Does this feeling pass, well everyone is different. For me, once I got over the fear and the shock, and got on with my life I learnt to cope with what my future holds. At times I get very sad about what is to come, but then at others I apprecaite the wonderful world we live in and the people who support me and lend me their strength when I need it.

We do find the strength inside is to carry on, I don't know how, but we do. Even now I 'forget' that I have incurable cancer, or think it's all a mistake, or that it will spontaneously clear up, of course none of that is true, but even with the reality of life, I am enjoying me time here.

My heart goes out to you, I don't have children which simplifies things for me, there are other woman here though, who do. I am sure more people will post soon.

Sending you {{hugs}}

Nikki

KirstyWL
Member

Oh help - newly diagnosed with secondary cancer

I was not sure where to post this but basically, after being diagnosed with breast cancer in April 2007 - having lumpectomy, radiotherapy and hormone therapy thought I was cured. I even did a triathlon in July! Then at the beginning of September I ended up in hospital with pnuemonia and after a CT scan - shadows were found in my liver and sternum. Somehow the cancer has come back and it can't be cured. I am only 38 years old and have a wonderful husband and two beautiful children (8 and 3 years old). It just seems so unfair. I can't stop crying - we only got the diagnosis on Monday so thats probably not surprising. We've had lots of support and Macmillan are involved. Sometimes it doesn't seem real and then it hits me all over again. I am trying to be strong but feel I am failing miserably. Does this feeling pass?