Secondary stage 4 bone mets... Feeling confused!!

[nicky08]

Hi rose
Sorry to hear of your diagnosis and we all understand how shocking this is but do all seem to be able to cope better once a treatment plan is in place. As an answer to your question about anthracycline chemo therapies then, yes, they are a type/group that can cause heart problems and, as you mentioned you have had two strokes I'd imagine they wouldn't want you to be put at risk. However there are other chemotherapy regimes and hormone therapies that do not have this known risk so there is still plenty to be offered to you. You certainly are in the right place being at The Marsden as they are a centre of excellence in the south and the most likely place that other patients seek a second opinion from, so you are in good hands. Hope you get a treatment plan in place soon.
Nicky x

[rose38]

Hi lucinda ,   god we are very similar in our cancer ,bones mets ,lympthnodes etc,

 im glad your happy with treatment now at rm,,im at sutton too .i have total confidence in them, i think after tomo  appt ,been told will get all mri and bone scan results ,then treatment will begin ,bone juice and hormone tabs, rads ,or maybe chemo,i have requested copies of all reports,coz like you said you can always read over them later.

 got copies of something sent to gp in which they said will dicuss at next appt chemo ,and mentioned [anthracyline] sparing regime ,given i have cardiovascular risk. think this is because i have had  2 strokes.,is this a type of chemotherapy? does anyone no.. anyway hope your getting on well with present treatment and,will post back tomo with results of appt.. best wishes ladies xxx rose

[lucinda]

Hi Rose your dx is similar to mine, except that I was told I had spread to bones(ribs,spine,pelvis,femur) at the same time.This was in May 2009. I only went to gp with back pain! I also had a large lump in axilla where lymph nodes had matted together. I first was put onto hormone therapy and bone juice which did not reduce the lump. I then had 3 fec/6 docetaxol which had limited success followed by 30 lots of rads to breast and axilla. This still did not reduce the lump and I had to fight to get it surgically removed 17/19 lymph nodes had cancer. My problem was they could not find the primary, hence the radiotherapy treatment in the hope that they killed off the original tumour.I was on letrozole for 2 years before it stopped working and I am now on capecitabine.

There is evidence that removing the primary can stop further progression.

I also have my treatment at the RM, originally went there for a second opinion  and have had mny treatment there since as i cannot fault the treatment. Do have a chat with the SBC nurse, you will find her very helpful.

I hope all your scans go well, you can get a treatment plan in place and then I am sure you will be less confused. Do ask for copies of your scan results as I find this helps to get everything straight in my mind,I never take in what they are telling me at the clinic appointment. I have my treatment at RM Sutton,which hospital are you at?

[2catlady]

Hi,rose,I was diagnosed primary &bone mets at the same time eleven months ago. It does hit you like a sledge hammer.
I'm ER+ Her-.
I've had tamoxifen but that didn't work so I was put into early menopause with zolodex injections then put onto letrozol/femara
I've not had a mastectomy either . But I'm after one. I a
So have zometa IV for bones. Also one blast of rads about 11 month ago for pain.
Please feel free to ask us boney ladies anything( look on the bone mets thread,it's really helpful) ill bump it up to top for you.
Huge hugs & take care,Helen xxxxxx

[rose38]

Thank you so much for replying ladies... i do have family support, 2 children 1. is 15 and another is 28 with a grandson which is just turning 1 years old they are great but its also nice to speak to women that are or have been threw the same.

I have a appointment on wednesday 22nd to get my full bone scan and MRI results to see the extent of the spread, they offered me and should start Zometa on wednesday but as of Femara that depends on blood results as im not quiet sure if im going threw my menauplause yet, they have also said they are saving chemo as a last result... i was expecting chemo but that all changed after they said i had bone mets.

Im currently under royal marsden, i know im in good hands i suppose i have to be patient

they havent mentioned surgery as of yet, but i do have really bad back ache and also pains in my left arm and leg which they know about...

anyway thank you all for taking the time out to message me, it really means alot xxx

thanks again

Rose xxxx 

[pumpkinsue]

Dear Rose, 

                      I am so sorry to hear your news.  Like you I was diagnosed with bone Mets and breast cancer at the same time a year ago.  My breast cancer is her2 pos and ER positive.  I haven't had any surgery yet.  I did have taxotere plus herceptin and perjeta for 4 months and since October I have 'just' been on the herceptin, perjeta, tamoxifen and the bone strengthener denosumab.  I was stable in January and have recently been scanned again.  It is just awful been diagnosed like you have.  Initially they wanted to try me just on tamoxifen and denosumab.  I was concerned that I wasn't being offered herceptin initially.  Anyway I asked for a second opinion.  I went to the Royal Marsden for that and they said I should have that plus the perjeta which is from the cancer drugs fund.  My local hospital in the end did change to suggest taxol and herceptin.

Anyway sorry for being so long winded!  I just want to say if you are not happy ask for a second opinion.  In the end I could see where my hospital were coming from treating me with the hormonal treatments but I just wanted to do something more proactive and fortunately they did listen to me.  You do have a say in all of this.  As you are her2 negative herceptin won't be an option but there are hormonal treatments and of course chemotherapy.  The idea of chemotherapy is horrific and I cried for hours when I first went to the chemo lounge.  However in the end it wasn't that bad at all.

Something else that has just occurred to me.  Is they may want to give you radiotherapy to your spine.  I had to wait for my fractured femur to heal.  I had radiotherapy to my left leg and then started on chemo and the rest.  Have they said there is any need to operate?  

I must say after a year of all of this I don't feel too bad. The uncertainty doesn't help but you sort of adjust to that.  Hopefully in a years time you will feel more positive. Its hard I know.  When you read different websites it does seem that her2 neg ladies with er positive bone Mets who seem to do well.   I know I shouldn't generalise.  Do you have any family? That is hard.  My children were only 9 and 11 at the time.  I told them and then said we would get a little dog which we have done and she is a lovely focus for the whole family.

Wishing you all the best.  I hope I may have helped a little bit.

Sue XXXXX

[Chocolates]

Hi Rose - I'm not the same breast cancer diagnosis as you so can't help with treatment but as I have mets to bone and lungs I certainly feel on the same wavelength emotionally. When first diagnosed and going through all the tests your mind is all over the place and it's hard to know and understand what is happening. As Tink said speak to your BCN if you can or ring the helpline on this site. They are there for you and will talk things through. I hope a treatment plan is put in place soon and you begin to get a better understanding of what this is all about. A secondary diagnosis is really scary but there are many women on here who have survived for a long time after.
We're all here to help so just post away.

Huge hugs, h xxx

[Tinkerbelle]

Hi Rose,

I'm so sorry that you find yourself here, but there are some wonderful ladies on here with a wealth of experience to share many of whom have had both a primary and secondary diagnosis together.

It is certainly a shocking experience and feelings are all over the place plus waiting for results.

I was originally diagnosed in 2009 (primary) with mixed ductal/lobular bc with new primary Dec.2013 and I didn't have a lump.

I have mets (2014) and I too thought they would throw everything at it when diagnosed but I think the idea is now control with the least amount of toxicity possible.

Once you have the results of your MRI and a treatment plan in place it does get a little easier.

Do you have a breast care nurse?  If so, you can ring and ask her to explain about the recommendation to have a mastectomy.

There are many treatment options for ER+ ladies.

Hope it's good news from the MRI.

(((((Rose)))))

Take care and there is light in the darkness.

Tink x

[rose38]

hi ladies, firstly i was diagnosed with invasive lobular cancer her2 negative and er+ on 27th march 2014 

i had a large tumor in axila which was taken out and was mulit focal also 19 /19 postive lypmth nodes the plan was then to have chemo, rads and hermone therpy but then after a CT scan it was found that i had bone mets in T3, T4 T5 T6 T8, L2 L3 L5/S1 (pelvis) and now thats all changed. i have been offered bone juice thats all.... up to this date i have not had any treatment as of yet. I have had a bone scan, and MRI to see where else if any i have anymore cancer. 

i have been offered a masectomy and its been exlained to me why they recommened for me to have one but im really still unsure, its to stop it spreading but mine already has!? its not currently in my liver, lungs or kidneys which im really lucky and greatful for...... maybe i will feel different once i get my full results!?

Its been a very scary time for me and my family and the waiting seems like forever, i just wondered if anyone else has been threw or going threw the same or similar as me    

would love to hear from you ladies

Thank you xx

Rose xxxx