Just got back from oncologist and have been told of secondary diagnosis… I had initial breast cancer in July 2011, chemo, rads and tamoxifen. I noticed lymph nodes in opposite armpit in February, they’ve been removed. CT scan and tumour markers normal, am starting on palociclab next week with anastrozole. Feel numb and frightened, have been ok for over 7 years… I suppose I’m looking for anyone with a similar story…?
Hello lambkin, sorry you find yourself here and hope you get lots of support.
I was diagnosed with my primary nearly 4 years ago - Sept 2014. Went through multiple surgery, chemo, rads, further ops/recon etc.
I was diagnosed with bone mets in December 2017 - a bit by chance as I’d had a CT scan because of breathing trouble post-DIEP and it showed something unusual in my spine. Multiple scans and bloods later the confirmed it in 3 places, vertebra, sacrum and pubic bone - I appreciate that I’ve come off lightly at the moment.
I started on palbociclib with letrazol in january, plus monthly zometa bone infusion and tryptyrolene injection to stop oestrogen. It was a shock to the system starting them all at once but as time has gone on the timing has altered and it’s starting to become apparent which drugs cause certain side effects.
The good news is that after my first 3 month MRI scan in march all tumours have reduced and the vertebral one is starting to fill in and strengthen itself.
I’m very fatigued, have to pace myself carefully which is tough for a working mum with dogs, cats, guinea pigs to care for on top of the demands from house, kids and husbsnd!
At easter i asked my onc to sgn me off work for a couple of months to get some strength back. In addition he gave me a month off the zometa and it’s been great! Took the whole of April to start to feelook human again, then part way through may I realised I’m living not just existing. I’m due treat next week then due back to work the following week.
I’m sure some one with more comparable experience to your own.will be along soon x
Hello Riversidedawn, thank you for taking the time to reply to me. You sound like you’ve been through a lot but it’s great to read that you now feel like you are living not just existing, you have a very busy life and working too! I took early retirement in 2014 and have various hobbies including a new puppy who is lively but a great joy! I’m trying not to think too much about what’s going to happen, it seems that life is going to be hospital appointments and blood tests… I suppose I’ll be up and down but none of us really know how long we’ve got, sorry to be morbid… Being in touch with others going through this is helpful though when you realise just how common this is. Hope you have a good day, thanks again and let’s get on with life! ?xxx
Hi Lambkin36,
I was diagnosed with SBC 4/01/18. My GP had put me forward for a CT scan in Dec as I was tired, had backache and diarrhoea. The scan picked up a tumour near my heart ( inoperable). So I’m on long term Chemo.
I was NED following a Lumpectomy and Rads in 2013-14.
It was a complete shock and not one that I was prepared for.
The backache and diarrhoea were side effects of Arimidex Astra Zeneca which I’d been taking since 2013.
My Oncologist who broke the news to me ( I was alone) was very sympathetic. The SBCN I feel just put on a suitable expression.
I’m on cycle 6 of Capecitabine, Oral Chemo tablets. I have insomnia and chemo fatigue as main side effects.
Used to work full time ( 3 hours commute all round), now (?) thinking of applying for PiP. I saw a CAB Adviser at the local Macmillan Centre who thought I stood a good chance of receiving it.
Hi ladies I’ve just been diagnosed with secondary breast cancer in my spine. I’m in complete shock as was not expecting it. Was originally diagnosed in 2009 and then again in February this year. Had breasts removed each time. Lymph nodes were clear both times. Just thought scans were routine and nothing would be found. Lots of thoughts going round my head! How long have I got being the main one. Still have to tell my family. Not seeing oncologist until 4 July which seems far away. Any advice would be much appreciated.
Hello Isobel
Sorry to hear about the secondary dx …bc is a sneaky blighter …keeps coming home back to keep us on our toes.
I have been living with bone mets for nearly 3 years now …it’s very much living with cancer these days
But it’s a shock as somehow we all think it’s cured and we are done and dusted with it. My primary was 2004 …so on 2015 when I got secondaries I was gobshocked to say the least .
This forum is a very safe place to visit in your darkest time …kindness and good advice from real ladies that understand it all.
Hi Lambkin36,
Thank you for your reply, no I did not have chemo in 2013/14 as was a low grade 2 and Oncologist said that the WLE and Radiotherapy would be sufficient followed by 10 yrs of AI Arimidex Astra Zeneca in my case.
I’m now on oral chemo Capecitabine and start cycle 7 on Tuesday. I’m completely tired and spent all day in bed as had diarrhoea twice and feel wiped out.
I have not been at work since Dec 23rd 2017.
I will be on chemo rest of my life the Oncologist said.
I’m looking into retirement: ESA/ PiP etc as I’m 61yrs and don’t gave the energy to work any more.
Judith xx
Hi Funny Face,
My chemo has been reduced from 4x twice to 3x and so I’ve got bit more energy. I joined a local down road keep fit group ( free as Local Authority) lovely group of ladies various ages and shapes.
One hour of fairly vigorous activity followed by hour of nurtrition advice food groups etc.
Judith xx
Hi lambkin
In 2003 was 1st diagnosed with BC at 33 yrs old after finding a small lump. Turned out to be 3 tumours including a DCIS and considered Grade 2 with a spread to my lymph nodes. On 14th Feb 2003 I had a mastectomy with a diep tramflap reconstruction followed by chemo, zoladex, radiotherapy, and tamoxifen.
In 2014 I found a tiny lump in my breast reconstruction which we all thought was going to be scar tissue but nope the BC was back. Thankfully it was tiny and was dealt with via a WLE and being put back on Tamoxifen.
On December 2017 I was given the shock news my BC is back. Again we thought it was scar tissue. This time there’s 3 tumours just to the left of my reconstruction pocket. CT and MRI scans show I also have Secondary BC in a chest lymph node and in my right lung, albeit small.
I have just finished 6 cycles of Docetaxel and Capecitibane (taken at the same time). It’s a scary time but i am sure you’ll find the BC forums helpful. I know i have.
T
xx
Had bc 13years ago now got ssecondaries in chest and bones started palbociclib in April white cells down after 2 treatment so missed a week now on month 4 white cells ok but did my own research and started herbal supplement to try to help. Having scans next month to see how treatment is working
Had bc 13years ago now got secondaries in chest and bones started palbociclib in April white cells down after 2 treatment so missed a week now on month 4 white cells ok but did my own research and started herbal supplement to try to help. Having scans next month to see how treatment is working
Hello Liz ,welcome to the forum .There is quite an active thread in the secondary section where you should get plenty of advice and support -I will post a link for you .Good luck with your treatment -Jill. forum.breastcancercare.org.uk/t5/Living-with-secondary-breast/Bone-mets-please-join-in/td-p/477048/jump-to/first-unread-message
Hi Lambkin36 I too sadly got the news after 6yrs cancer free haveit back. Started treatment letrozol and pal… Waiting results of PET scan CT scan showed in rib cartilage ? still taking it in.
Hi kirstie.
Sorry you’re having to join us. I found out a month ago that it’s spread to my liver. I only had my primary last year. It seems it’s been in the liver since diagnosis but the lesions were too small to identify at the time. ?
When I found out I spent the first two weeks searching cancer forums relentlessly looking for hope, and I have to say I’ve found it. It’s amazing how many people are living for many many years with secondaries. I’m sure that will be us too.
I started letrozole last Friday and I start palbociclib this Monday. I’m also on zoladex injections to hopefully shut down my ovaries. X
Lung mets for 12 years- wow
After 6 years I have just been diagnosed with secondaries on bone, liver and lung, big shock ! I have been offered a trial with cabazitaxol. It is every 3 weeks for 18 weeks, will also have bone injections every 4 weeks. Anyone else been offered this trial. Apparently this drug has been used on prostate cancer with some some success. Hoping it works x