Cancer’s back

Oww dearest MamaSm,

What can I say, you are walking the steps all of us fear to tread.  Your head will be in a whirl, it's only natural, just like when the journey first started we have so many questions and don't know the answers, then little by little we gain knowledge and strength.  We work out how we will deal with this - and then we get on process it all and do it.

Do you mind me asking how you found this out? Have you being having problems or pain? 

You need to keep focused on how well the last journey went and how far medial treatments have come since then, there is so, so much that can be done these days.  No words I write will take your worry away, just remember the waiting is the worst time, this triggers us to worry, to worry about a situation that we don't really know the details about - if, such a small word, yet says such a lot... 'if' you can try to put this out of your mind till you get your appointment, you know deep down we can and do drive ourselves mad with worrying, having our mind come out with a million different things and little by little wearing us down.

I am sure some of the other ladies will be along to give you advice, till then, please keep posting on here, together we will try to help you though this worrying time.  All will seem better when you have a treatment plan.

Sending you love and hugs xxxx

Thank you for your kind words. I had a chest X-ray asi had a persistent cough - lungs fine but they found the tumour on my rib. Yes, it’s the not knowing what’s ahead that is difficult. 

Hey MamaSm

I am one of the newer champs on Macmillan, and Its nice to meet you- except for the circumstances we have met for. 

Firstly I want to say how sorry I am for the fact a tumour has been found on one of your ribs, after doing the amazing job of getting through breast cancer 5 years ago. I cant even begin to imagine how you're feeling right now, but ive had a look on Macmillan for some information for you. This is a link for secondary bone cancer and information regarding it which you may find helpful to read through. Also, This link is to the information regarding the emotional side of this, as being diagnosed for a second time, is enough to do more than put your head in a whirl. 

Just remember how strong you have already been, and that you've already got through the massive hurdle of overcoming cancer once, and although you didnt ever want to do it again, you know you have what it takes to kick cancer out. 

I wish you the best of luck, do continue to let us know how you get on with everything, and remember, us here at Macmillan, like the lovely people who have already replied to you, are always here for you, for whenever you want to chat, want support or even just want to vent! We will be here to listen. 

Lots of love and light to you, and good luck with your oncologist appointment, 

Alex xxx

Thank you. 

MamaSm, so sad to read your news, this is for you and all of us...wishing you all the best xxx

MamaSm

Sorry to hear that you're here on the roller coaster second time around...

I was diagnosed in a similar way almost two years ago - I had a persistent cough for several months before seeing the doctor and the xrays and CT scans were abnormal. In my case, they found the lung spread first (they though it might be an autoimmune issue rather than cancer), but then they found a met in my spine and on more testing, found that the signs in my lungs were secondary to my original BC in 2013/14 (for which I had mastectomy, chemo and radiotherapy and Tamoxifen)

I'm not surprised that you're in a whirl - hopefully you'll get more idea of what's going on when you see the oncologist - i'm sure that you're aware from last time that the waiting is the worst bit! 

The GOOD thing is (if there is one, I'm a great one for silver linings) that bone mets, although not curable, are often the ones that can be kept on hold for a long time by fairly 'easy' treatment - injections/tablets, although some people do need more radical intervention. There are people on the forums who have lived with secondary bone cancer for many years. Hopefully any further scans that you have won't show any further spread to other organs. 

Wishing you all the best - keep posting and let us know how things go! 

Big hug to you!

Hi MamaSm. 

I was diagnosed with initial Breast Cancer in 2013, had a lumpectomy, 4 nodes removed ( clear), low stage 2 so had Radiotherapy only. Post op, I developed Cellulitis in op breast followed by Lymphoedema in op breast. Fortunately that resolved with a few months of antibiotics and MLD with a NHS Lymphoedema nurse ( referral by Oncologist). 

Then I was  NED and to take Anastrzole for 10yrs. I actually took Arimidex ( Astra Zeneca) after  badgering the Oncologist and my GP until they relented. 

In December 2017, I had backache and Diarrhoea ( which I put down to Arimidex).  The GP I saw is married to an Oncologist, and she referred me for a scan. 

On 4th Jan 2018, I was told by the Oncologist that I had Secondary BC stage 4 ( Mets). To say I was surprised and devastated was an understatement !!! Mets in spine and sternum and also the major one near heart. 

I asked the Oncologist what the % was for Secondary BC. Her reply was one in three. I think that if that knowledge had been available to me on completing my Radiotherapy in 2014, then I would not have felt SO shocked in Jan 2014. However, I appreciate that not everyone would share my take on things.

Once there is a treatment plan in place it will become more organised. Though the shock will take time to process. I still sometimes think it’s not really true

However, I have been taking oral chemotherapy tablets Capecitabine for a year Feb 2019. To start with 4x twice a day, ( SE too strong eg red and hot hands and feet and extreme exhaustion). Now on 3x am and pm and much better.  Main SE dry skin/ eyes/insomnia/ heartburn/ and lack of energy. 

Also if there is  a Macmillan counsellor or Maggies Centre/ Haven,  do contact these excellent resources for complementary therapies eg massage/ reflexology/ reiki/ yoga / counselling etc. 

Secondary Breast Cancer is underfunded in terms of support ie Secondary Breast Cancer Nurses. There is one, part time nurse where I live for the whole of the Health Authority !!

Some areas have good support, others SNC nurses are not in place.  

There are in some areas monthly social and topic meet ups for secondary breast care patients. I have been to the local one and the other ladies who attend are great. I thought it might be very depressing, but it is not. The Area SBC nurse attends  each one. The meeting is arranged via:

https://www.breastcancercare.org.uk/information-support/support-you/secondary-metastatic-breast-cancer 

And 

https://www.breastcancercare.org.uk/information-support/support-you/secondary-metastatic-breast-cancer/living-secondary-breast-cancer-meet-groups 

Keep posting and we will be here for you .

Judith xxx

HHi MamaSm.......I am on capecitabine 4 tabs twice a day too and my feet are burning tonight ....interested to hear that someone can stay on it with a reduced dose . Have your scans shown that it is effective ? I am getting scan results next Monday and want hope ! Hope you are getting on ok ( ish ) , I agree that there is not enough put into secondary cancer , I was also told that 1 in 3 people might get spread , and I have always wondered since why I did not get annual CT ( or something ) as mine was “ aggressive “ .....best wishes 

Message above was for jmp , I am being useless tonight ...sorry 

Thank you. It sounds like you’ve been through a lot.