diagnosis

Hi  

Thought I would send you my experience of receiving the news that I had secondary breast cancer.  I was diagnosed with initial breast cancer November 2013. 

In Nov 13-Feb 14, I had a lumpectomy ( as low stage ), followed by radiotherapy and 5 yrs ( later lengthened to 10yrs) of Anastrozole ( Arimidex Astra Zeneca) as hormone sensitive bc. Additionally, I had 4 lymph nodes removed, all clear. Please see my profile for more detail. 

In Jan 2018, had a scan ( suggested by my local GP who’s incidentally married to an Oncologist), because I had had backache and diarrhoea. So, I was devastated on Jan 4th 2018 to be told that I had secondary breast cancer stage 4 : a large tumour round an artery near heart. It transpired that the  backache was due to Osteoarthritis ( diagnosed by an Isotope bone scan) and the diarrhoea probably due to the anti oestrogen tablets Arimidex I was taking. 

I just said ( in shock) how long do I have? My lovely Oncologist replied  6-18 months without treatment. With treatment some years. So, I opted to be put on Chemo straight away. I’ve been on oral / tablets chemo Capecitabine since that date.

All it takes is just one rogue  cancer cell floating off round body  to start the  breast cancer growing somewhere again. 

I did ask her what the reoccurrence was for secondary bc to be told : one in three. If I had known that,  when I had had “no evidence of disease”  following lumpectomy, I think that I would not have been so shocked on Jan 4th 2018.

My initial dose of Capecitabine was high to blitz the SBC,  I had an Isotope bone scan, which showed that I also had tumours in the spine and sternum, in addition to the original mass. I was  prescribed Calcium tablets, VitD 3, ( and opted to take the anti depressant Duloxetine, brand Cymbalta). 

The dose of Capecitabine was reduced subsequently as I had  side effects (SE) of diarrhoea, sore eyes, burning soles of feet, insomnia and severe heart burn. The lower dose is much more tolerable. 

I “try”  to live day to day and don’t think about the fact I have non curable cancer and concentrate instead on the fact that it is possible to treat/ contain it instead.  But some days it is not easy, and my sleep is not as it could be ( insomnia). Prior to the initial bc diagnosis I had sleep apnea ( diagnosed via a sleep clinic at hospital).  

Through research on Google ( no help from Hospital sleep nurse who just suggested CPAP machine).

I have been to Guy’s Hospital London and had a mouth device ( Mandibular Assisted Device: MAD ) made on advice  of the consultant); my referral to Guy’s was by my dentist and also GP. The resulting mouth device means that I have no more snoring/ waking up from sleep. 

I also have a  daily blood thinner injection of Tinzaparin in the stomach ( via GP surgery M-F & District Nurse weekends as can’t stand needles). One in 10 people with cancer either get blood clots in lungs or DVT. I had blood clots in lungs diagnosed via a scan. Before scan.  I had had shortness of breath walking. Plus I had a minor blood clot in leg, from sitting around too long on sofa. This I try to avoid now. 

The local Macmillan Horizon Centre offers free complementary therapies eg Acupuncture, massage, Reiki, Reflexology. Plus yoga Pilates and a Counsellor and these all help.  I also attend a Secondary Breast Cancer social/ information monthly group which helps too. 

https://www.breastcancercare.org.uk/in-your-area 

I hope that the above is useful. 

Judith xx

thanks for your words.. I didn't know that recurrence was so high! I suppose at the moment im worrying more for those around me .ive had breast cancer twice, last time having mastectomy and chemo 9 years ago, and thought id won. I suppose I will have highs and lows, it doesn't help my cancer isn't common so not much info on line or people with it.