well ladies, here I am joining yet another group in the Macmillan forum. Yesterday wasn’t such a good day. Seems I have reoccurrence of breast cancer- is that even the right term/pronouncing of the thing. I’m referring to this as my triple crown moment. I was diagnosed with BC in 2014 and of course did a BOGOF this year with a thyriod cancer diagnosis. I feel well and truly buggered. It was that look on everyone’s face again. The repeating of words. The telling of what the dr said. The not being able to answer or ask questions. I really don’t know where I stand with regards to treatment , moving forward, what happens next. What do I plan for. I’ve to go for a bone scan and a CT PET. (Was almost delighted she didn’t say MRI) I’ve cried and laughed and promised my soul to everyone and about to go into the self injury stages of - you shouldn’t have had that piece of cake/class of gin and taken up marathons after your original diagnosis. I don’t even know if any of this is making sense at all,
somwhat do I need for rom you. Guidance. When I originally joined a breast cancer forum I found it really helpful. Everything seemed normalised. I mean, I’m actually thinking of selling my house in case I need to pay for some sorta treatment in far away lands! My head is all over the place. I don’t know what questions I need answered because I don’t know what questions to ask. I’m gutted and massively disappointed. Sleepless in Belfast here, and I’ve to go to work in two hours! I can’t take time off as I’ve just returned to work after 50 weeks sick leave. I’m really confused. I want to curl up and cuddle my daughter and want to go find out more info at the same time. They also couldn’t book me in for scans! And I know that nothing will be done over January and February due to ‘winter pressures’. So again, some one please give me info on what I don’t know to ask about.
Pauline
xo
Hi
Oh crikey! What can I say? - so sorry to read your news 
I think if you post in the breast cancer group which you found really supportive previously, then you will find a lot of support from the ladies there. (cut and paste your thread, rather than writing it all out again).
Financially, if you have to take time off work (you might not have an option if you're poorly) and if so, do give Macmillan a call for their advice. We do have fantastic treatment here in the UK and it's developing year on year on year. I was diagnosed last year and even since my diagnosis, I would have different treatment if I'd been diagnosed 8 months later!
Don't make any rash/rush decisions and try and take each day/test as it comes - once you know what your treatment plan is, you'll know far more of what you have to deal with over the coming months.
Kindest wishes,
Hi Pauline,
Firstly you will have more information when there is a treatment plan. Do you have a Breast Care Nurse? They
can provide lots of information and support eg Counselling via a Macmillan Counsellor /Information on whether your hospital or Oncology Centre offers complementary therapies ( free) eg Acupuncture/ massage/ Reflexology/ Yoga/ Reiki/ etc? Also ask them to take notes if everything is hard to process, also you can request copies of medical reports sent to GPs etc ( if you want them).
Please see this link regarding a reoccurrence of breast Cancer:
It is an enormous shock to be diagnosed with reoccurrence and or / secondary breast Cancer I agree! I had NO
prior preparation when I was told that I had Secondaries Jan 4th 2018.
I was diagnosed with initial BC in November 2013, stage low 2, and had Lumpectomy, Radiotherapy and was put on Anastrozole for 10 yrs. Post op I had Cellulitis and Lymphoedema in op breast for a number of months which eventually settled down following antibiotics for some months and NHS MLD by NHS Lymphoedema Therapist via referral from Oncologist. I was off full time work for one year to recover. Then was given no evidence of disease. ( NED).
In November 2017, I had back pain and some diarrhoea and felt tired more than usual. I put it down to Anastrozole.
My GP who is married to an Oncologist, said in view of your history I’m putting you forward for a scan. I saw an Oncologist Registrar in December who said the results weren’t available but ..... “ there doesn’t seem to be anything sinister but I’m not a Radiologist” ( never was a word more true!). He added don’t bother to visit again some will telephone you with the results end of December.
This did not occur, so I rang another Oncologist’s Secretary early Jan ( she uttered the words “ he said what?”).
I received an email asking me ( from breast Care Nurse) to come to an Appointment for results on Jan 4th, which I did alone to be told by my Oncologist, “ I’m very sorry to tell you that you have stage 4 Secondaries “. I was introduced to the part -time Secondry Breast Care Nurse ( only one for health authority).The Oncologist apologized and said they would use my experience as a case study in “how not “ to break the
News to someone of a reoccurrence/ secondary breast Cancer.
There followed a biopsy on neck ( painful), then was put on oral chemotherapy tablets indefinitely ( when stop working on to something else). Side effects manageable, been on them since Feb 2018. However, scan showed blood clots in lungs ( Side effect of cancer or genetic mum’s side). Bloods clots necessitate daily anticoagulant injections in stomach by district nurse ( I hate needles ...).
So, I’ve learnt via notice in chemo waiting room that 1 in 5 people with cancer get blood clots eg DVT and/ or clots in lungs. I think I would have preferred to be warned in advance about this.
Also, lovely previous Onc when I asked her about secondary BC % reoccurrence answered 1 in 3 get a reoccurrence.
I’m currently applying for retirement on ill health grounds ( now 61), started process with London local authority in July 18!! You learn to be patient, glad I joined Unison 21yrs ago.
I learnt this summer following an Isotope Bone Scan by new Onc, previous lovely Onc now doing research in London, that I have Secondaries/ Mets in sternum and spine ( plus Osteoarthritis), in addition to original secondary site near heart.
I tend to post on main Breast Cancer site as do others with Secondaries. The “Awake thread” is popular 
For general information: there are support groups/ meet ups for people with Secondaries, organised by Breast Cancer Care please see the links below for further details:
https://www.breastcancercare.org.uk/search/google/Belfast
https://forum.breastcancercare.org.uk/t5/Living-with-secondary-breast/bd-p/4495
Sorry if the above is TMI, I would have preferred more information myself, so please ignore above if not relevant.
Love Judith x 
