Hi Cath

Im giving a big virtual hug as I now share what you are going through.

I am at a strange junction myself as having been told by letter from the oncologist that my Stage 0 very early breast cancer but grade 2 is very slow growing and would not benefit from the Oncogene DX test and a scan and MRI which I had asked my GP about as I was worried my cancer had moved.

Well last week I had an emergency referral to the breast clinic at hospital sent by my GP, after I noticed orange peel dimpling on my right breast( that had a lumpectomy last November.) 

I now have a 2cm lesion in my left breast and now I have appointments for scans for organs and bone cancer 

Im now in the queue for the waiting game but I won't have long to wait and will deal with what comes best I can.

Keeping it to yourself is fine (or between you and your husband). First thing I did was remove my social media account. I was fine telling friends, but social media spreads like wildfire. So I reigned it in from the off. But telling friends can be an outlet (emphasis on can). It can help. My mates said "if you need anything let us know". I just thought "yeah yeah course you will", but I'll tell you what, some of em have gone beyond. They built a garden wall for me and even paid for the bricks. Saved me £1000 (I am a bricklayer myself but fatigue is doing me right now). Your mates might rally round. But if they don't know, they can't. I do understand both sides though. Nobody wants everyone knowing your business. My barber asked why I only had half a beard growing so I told him. I don't mind. But that's me.

I have scans booked for the 17th. Treatment is done for now. I won't lie, I am absolutely bricking it (scuse the pun) but I'm told that's natural. And why wouldn't it be. I've towed the line, followed the rules, took the drugs and done my best. What I have is hope. And support from my wife who deserves a medal the size of a bin lid. 

Hi,

Thank you I just feel that they are not communicating enough information to me. I don't know what treatment stage 4 recurrence people get. I would have thought that would all have been discuss. 
 

I'm only getting radiotherapy starting Monday for 5 days because I did not accept I did not have any symptoms as I have in my hip ,and on painkillers from GP as I went to her in May . She  told me I had arthritis which we now know  wasn't. After that I'm not seeing him till 25th November. 
 

I hope and pray for your situation. I'm glad I can come on here as my husband can't speak about it. 
 

imvthr opposite I'm an open book lol and tell most people I know. 

Matt you've said it as it is and dealing with what's been dished out from the menu of life in a positive way.

I will take your advice and share with friends once the going gets tougher.

I have one less problem in that I've never done social media such as Aff YerFace Book but I am well known in the area as I worked in Primary care in the community not as a nurse or a doctor but in a profession strongly allied to medicine.

I have not told my grown up children about this latest fast moving development as what's the point in worrying them as I cling on to every last vestige of hope that it can't be possible having this lesion as less than a year ago the 3 d mammogram showed nothing.

My husband now knows. I've told the local parish minister and my best friend and that's it, despite many folk I meet telling me I look great as I've lost weight but looking a wee bit tired.

I was referred to the local CLAN centre for seated yoga which despite sounding daft is helping me.

Of course I'm sharing it on here where we have the luxury of unburdening ourselves and sharing under the safety of a forum.

No doubt it's not hit home yet.

Soon enough it will.

Don't leave it from your grown up kids. They're grown up. They'll understand. My eldest is 6. She knows. Kids are resilient. Your grown up kids will be better off knowing your journey than being hit with some bad news at a later point in time. Tell them. It hit home for me when I had my teeth out for radio. Chemo, hair loss, nah. Teeth out was the one.

Can you do me a favour, though? I'm not religious (if there was a god, this stuff wouldn't exist), but have a word with your big guy for me will you? Ally my fears if nothing else. 

All the best. Don't bottle anything up. Be true. X

Hi Cath

In April I had 5 days of radiotherapy condensed from the usual 3 weeks worth of radiotherapy as a clinical trial found that 5 days is as effective as the previous dosage spread over the 3 weeks.

Like you I felt I was given very little information from some health professionals.

The one who was really good was the MacMillan nurse I was allocated as she seemed to act as a conduit between me and the breast surgeon but not the oncologist for some reason.

I had doubts about the radiotherapy and the radiologist noticed and told me that she could sense I was uncomfortable and that once the radiation treatment is given you can't give it back!

So you can either mention to the radiologist and ask how long your treat,ent would be delayed by if you ask to speak again to the oncologist or oncology nurse before Monday.

Im in a somewhat similar situation to you in that I contacted the surgery at the start of this year but the difference is I suspected that my cancer had moved on but unfortunately it was the oncologist who dismissed my concerns and one senior GP who decided I did not need a scan or an MRI as a result.

By sheer luck in early May I came across this other GP who was listened to my concerns but I am still in a waiting list for appointment with respiratory clinic at local hospital ..Yes waiting since May!

Now it's like the floodgates of the NHS have opened as within 4 days of seeing the breast consultant I have a bone scan next week and an entire body CAT scan the well after on the 17th.

I just hope I can turn this diagnosis on its head.

Hi, 

oh that makes me feel better. I will go for the radiotherapy on Monday I want to start some kind of treatment. It's probably palitive radiotherapy so I don't know if there is any difference in that and normal radiotherapy. 
 

I understand it's incurable but I'm not giving up the fight of holding in to the dream of living with this for hopefully years. 
 

I've read that radiology goes on working for weeks so maybe that's why my next appointments not till November. That's what I'm hoping for anyway. 
 

if on the next app he dies. It come up with a treatment plan I will re-evaluate. I found the colectoral nurse was just agreeing with him. 

Dear Matt

Im not religious either not having attended church for years but I do believe in God.

You must be wondering why I went to see a minister ( retired by the way as he was our neighbour until this summer) plus not even the religion that my parents chose for me either.

If you are not wondering I will tell you anyway....

I decided to buy a funeral plan and there was the bit about what your wishes are etc burial or cremation....stuff that you never really think about or stuff you procrastinate about.

I went to ask his advice on the order of how things went during a burial service in church.

So I chose the items I want in my service and strangely and I mean strangely enough I feel that I have taken back some form of control in having stated what I want to happen and where I want to be buried as I just chose and paid for my lair.

Next item on the list is my gravestone and on the plinth I'm going to pinch a line from the great Spike Milligan himself " I TOLD THE DOCTORS I WAS ILL"

In my case this is very true.

Hi Cath

There is is another thing I forgot to mention.

I only found this out myself this week from the GP when I said I had no confidence in this particular oncologist and without rocking the boat was it possible to be allocated a different person.

Resounding YES!

Cath use your GP to ask for different person in cancer team to be involved in your treatment should it ever come to this,

Its not unusual nor unreasonable.