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Newly diagnosed no idea what this will mean...mets in liver and spine..only got primary diagnosis last week now secondary!!feel

12 REPLIES 12
valkeh
Member

Re: Newly diagnosed no idea what this will mean...mets in liver and spine..only got primary diagnosis last week now secondary!!feel

Andier,
Hope you are having a plan/ your treatment and you are in amore positive place.
I diagnosed with primary BC and after I finish all my Tx and had my first clear 1 year after my initial diagnosis. However, my back pain -which had developed just before I felt the lump in my beast- came back. Scans confirmed that the initial sacn has been diagnosed wrongly and I had mets from the start... It was a nightmare. It was another living hell.. However, a year after this 2nd shock, I live, I work and I still laugh.
Don't lose your faith. We are all here to support each other. The big BC family
Look after yourself
Valia
x x x
Ramsfan55
Member

Re: Newly diagnosed no idea what this will mean...mets in liver and spine..only got primary diagnosis last week now secondary!!feel

Thanks Tracey, I am relatively well at the moment, just occasional flare up of pain mainly in my ribs and neck. Not sure it's all down to the bone mets though, ombination of mets, arthritis and the medication. I'm on tamoxifen too.
Hope you are well too.
Love Suzanne x

tracyld
Member

Re: Newly diagnosed no idea what this will mean...mets in liver and spine..only got primary diagnosis last week now secondary!!feel

Hi Suzanne,
It is good to hear that you have kept your faith. I remind people that God did not give me the Cancer, my body grew it. I also saw the clinical psychologist at Derby and she was fantastic. I never thought I would feel well again but after 6 sessions with her I gradually came out of the big black hole I was in. I hope you are managing to stay well . Love and hugs Tracy xxx
Ramsfan55
Member

Re: Newly diagnosed no idea what this will mean...mets in liver and spine..only got primary diagnosis last week now secondary!!feel

Hi Andier, I too was Dx with primary in oct 2010 and 2 weeks later bone mets! I have always been healthy and sporty so was totally shocked. At 55 I couldn't believe it and needed a lot of support from family, friends, GP and oncology/breast care team. This is still the case and I am actually starting to find enjoyment in my everyday life once again. I find that by doing what the others have suggested is exactly right, put yourself first and build the best team around you that can help keep you positive and as well as possible. My 'team' now includes my osteopath, physio, acupuncturist and the Secondary Breast Cancer Care Support Group that I attend every month in Sheffield.
There is one particular professional who has been great for my mental and emotional well being. She is my clinical psychologist. Your doctor or the breast care team should be able to refer you to one. I can't recommend this kind of support highly enough.
Give yourself time to come to terms with this and build your own team. My husband and children have been great and they are very positive too.
I should also mention that God is my team leader and my faith has helped to drive me forward.
Stay on this forum, cos you will define so much help and support. Stay off google except for obvious sites like Macmillan and cancer research uk.
love Suzanne x

Guest user
Not applicable

Re: Newly diagnosed no idea what this will mean...mets in liver and spine..only got primary diagnosis last week now secondary!!feel

In April last year I was exactly where you are now. One week I 'just' had BC the next week I also had mets in liver and bones. The 'double whammy' is certainly hard to cope with. Just when you are getting your head around having cancer and what that means, the whole game plan changes. I want you to know that however bad it feels you are not alone and there is support there for you. I really wish I had found this forum at that time as there is great info and so many lovely people on here.
Do call the helplines (BCC or Macmillan) and talk things through with them. They will help you to know what you need to know and how to make some sense of your feelings at this time. They can also help with how to talk to family and friends about your diagnosis. There are so many questions, most of them will pop into your head when you least expect them. The best advice I had at this time was to make a note of every question you have however small or stupid it may seem. You can review the list later and see who is the most appropriate person to answer each one. It's easy to get flustered or sidetracked and forget to ask things when you see your oncologist so have a list of questions and tick off each one as you go. If you don't understand what you are told ask for clarification or some written info. You should have a nurse specialist you can contact. I've found them brilliant for going over things that had been said at each consultation and for expanding on the info given.
If you have already had scans and biopsies done then by the time you see your oncologist you should have some results from these. There can be an awful lot of information at this consultation. It's a good idea to take someone else with you (a friend, relative or a nurse) or make your own notes of what is said. When your oncologist starts to explain results and treatment plans it's such a lot to take in. Ask for copies of reports so you can refer to them later. I usually have a Macmillan nurse who sits in on my oncology consultations and it is useful to be able to talk to her later to go over any points I have missed or not fully understood. Once you have a treatment plan you will feel much more in control, the uncertainty at this time is the hardest thing to cope with I think.
I had 6 cycles of chemo and herceptin with a modest response, now on herceptin and zometa and so far stable on that. While none of it was exactly a walk in the park it was bearable. I started gently back to work in December and am now increasing my hours back to full duties and starting to feel like I can have my life back
Sorry if I have waffled on too much. I wish you well as you start out on your journey. Be encouraged and inspired by all who have gone before, especially those who have been travelling this path for many years.
nicky08
Community Champion

Re: Newly diagnosed no idea what this will mean...mets in liver and spine..only got primary diagnosis last week now secondary!!feel

Hi Andier, it is such a shock when you hear you have BC let alone secondary BC and in your case all at once. This isn't unheard of, as Lucinda has said and who knows if some primary BC ladies already have mets that have not been found. However as all of us mets ladies will tell you once a treatment plan is in place you do start to feel more able to cope. My secondary dx came when my daughters were 17 and 19 and the worst thing was telling them. However that was 5 years ago and the treatments I have had, chemo then hormonal, have kept me stable all this time with no changes to my lifestyle other than some tiredness that comes with the drugs more than anything. I hope you will come back on here and ask any questions. As Lucinda has said in her great post we are here to help and you may want to go to the liver and bone mets thread to talk with ladies going through the same thing as you. Do remember though that you are not alone and this forum was my life saver when I was going through those first early days of diagnosis, it helped, and still does, so much to know there are other ladies out there living with secondary BC.
nicky x

lucinda
Member

Re: Newly diagnosed no idea what this will mean...mets in liver and spine..only got primary diagnosis last week now secondary!!feel

Andier what a shock,I was dx with secondary breast cancer in May 2009.I had never been dx with primary and they still have not located my primary breast cancer( I am hopeful it no longer exists).I had a local occurence in my lymph nodes and mets in my lung,spine ribs,hip,pelvis and femur.I will give you my treatment plan but it would only apply to you if you are found to be er+her2-.
I had chemo (because of lung and axillary mets) followed by radiotherapy and then hormone therapy. In May this year I had my lymph nodes removed and I no longer have lung met. I do now have liver mets,which I found out a few weeks ago,and I am now on a new treatment which has only just been licenced and is not yet paid for by NICE so I had to get it via the cancer fund.

Every one of us will have a different treatment depending upon whether your cancer is hormone + or nrgative and your treatment will be tailored to you.The waiting at the beginning is the pits and I promise you will feel better when you have a plan in place,and you will feel more in control.
Do speak to the helpline as they will be able to help you.Do go to see your oncologist with a list of the questions you want answered.Take someone with you if possible and ask them to take notes as you will not be able to take it all in,or remember everything said.
There is also a thread running for liver and bone mets.You will see there are many ladies who were dx quite a while ago. Just come back and ask as many questions as you like,someone will be able to help or point you in the right direction.

I am so sorry you have had to join us,but we are a friendly bunch and do understand what you are going through.I will bump up the liver and bone mets thread for you so it appears in latest posts.


L xxx

Guest user
Not applicable

Re: Newly diagnosed no idea what this will mean...mets in liver and spine..only got primary diagnosis last week now secondary!!feel

Hi there Andier

Jus been reading your posts and felt i had to reply.....i too have secondary b.c., all diagnosed and treated . within a 12 month period, that was nearly 3 yrs. ago. i am still working 4 days a week, and i am busy looking after my two girls aged 14 & 9. how did i get through it........with support from family, friends, staying positive, eating extremely healthily, making time for myself as much as i can. in the weeks shortly after the secondary diagnosis i relied on a mild sedative & a prescribed sleeping tablet, i no longer use either.......give yourself breathing space, one step at at a time, stay positive & dont ever ever give up. xxx
Guest user
Not applicable

Re: Newly diagnosed no idea what this will mean...mets in liver and spine..only got primary diagnosis last week now secondary!!feel

Andier
I was diagnosed in Oct.'09 with a primary & spread to spine and pelvis. I had treatment and, like mrsblue, am still here.
To feel in control, I agree with mrsblue - put yourself first and get all the support you need.
The best person for suppport and information now is the oncologist -he/she will be able to answer ALL your questions regarding your particular type of breast cancer, what proposed treatment will be and why - and who to talk to between appointments if you need support/advice. Since you have 2 weeks to wait for oncology appointment, I would find out who your breast care nurse specialist is and speak to her.
You can also get a copy of your pathology report after seeing the oncologist too - this gives details of the type of breast cancer.
It woiuld be well worth telephoning BCCare helpline - they can help you regarding the questions you need to be asking the oncologist at this stage and how to talk to teens about this!
Lots of love - Jen
moorcow
Member

Re: Newly diagnosed no idea what this will mean...mets in liver and spine..only got primary diagnosis last week now secondary!!feel

HI Andier, just a welcome to a very supportive place in the face of the shock you will no doubt be feeling - the waiting for a treatment plan is really I promise one of the most difficult bits - call your breast care nurse if you need to talk , or the bcc helpline advertised on here - it is frightening to have a sudden double whammy diagnosis but there are so many positive stroies from the secondary lasses on here I hope you can take heart from them,
best wishes Nicola

mrsblue
Member

Re: Newly diagnosed no idea what this will mean...mets in liver and spine..only got primary diagnosis last week now secondary!!feel

Hi Andier
So sorry to hear you've had what is sometimes called the "double whammy". A frightening place to be in... I know... I've been there, in 2006 and I am still here, with mets in liver and several areas of bone. Hopefully that may encourage you - there are others of us who are doing surprisingly well after various treatments.

I don't want to write an essay here, but just a few suggestions.
You need the best possible support at this time. Maybe family, maybe friends, definitely you'll get support on here, but we are waiting for a new forum to be launched, so sometimes people don't notice new threads - glad I did...
Next, questions to ask your oncologist (another word to get used to). If (as I did) your breast surgery has been postponed, it's NOT because they have given up on you, not at all - you WILL feel better once you get your treatment plan. You may need a biopsy of your primary breast tumour, which would give info whether you could be treated with hormone-blocking drugs (usually taken as tablets) and/or Herceptin. Most of us have chemotherapy sooner or later, but I didn't have any chemo till 2009!

And don't forget the resources on this BCC site, including telephone helpline as has been suggested.
Lucy_BCC
Member

Re: Newly diagnosed no idea what this will mean...mets in liver and spine..only got primary diagnosis last week now secondary!!feel

Dear Andie

I have replied in your other thread but please do call our helpline if you feel it would help to share your fears, they can point you in the direction of other support too

0808 800 6000 9-5 weekdays and 10-2 Sat

Take care

Lucy

Guest user
Not applicable

Newly diagnosed no idea what this will mean...mets in liver and spine..only got primary diagnosis last week now secondary!!feel

Please help, was diagnosed with primary last week and this week mets in liver and spine...its all so much to take in...I feel totally helpless and out of control, no oncology appointmnet till week after next!!Any words of encouragement or advice or help would be good please...no idea what this will mean for me and my two teenagers..am lone parent too so am so worried about them .spinning at the moment xxx