Received Formal Letter Confirming Initial Cancer Diagnosis

Morning Rusty

I hope you have gone back to sleep. I'm replying just in case.

it must feel overwhelming at the moment and getting it in a letter makes it all very real. However you will feel much better when there is a plan in place and you know what is happening. At the moment it is like trying to play a game with only some of the pieces and some of the rules. Your imagination can do amazing things not always for the good.

Try to do some practical things to help you feel like you are in control. Basics like doing a deep clean in the bathroom. If you have chemo or surgery you will not be able to do it. Have a look at what you have for going into hospital. Don't buy anything though, I got all new summer pyjamas et c and I will be going in March! In other words take control of what you can now. It will distract you, make the waiting time go more quickly and it will help you sleep.

Once the plan starts you will feel much better. BC is weird really, you go to the doctor feeling fine and come out the other side feeling pretty crap.

There is no such thing as a stupid question keep asking until you understand everything. Remember you have the right to a second opinion.

Hugs and best wishes.

I honestly think mentally this is the worst point, I can fully relate, you are feeling fit and well, you see something or feel something that isn't quite right, go to the doctors,  end up at the hospital and before you know it you have a potentially terminal disease without feeling ill!

All the scans etc are necessary in order to get you the best possible treatment plan, the waiting is the most stressful thing but please try not to assume that the results are all going to be bad.  The scans are normal, we all have them so the surgeon and oncologist know what they are dealing with.   Sometimes the results are unclear, I now have 6 monthly CT scans of my spine as they spotted something,  maybe benign may not, so they are keeping an eye on it. Be prepared for the scans to pick things up, it doesn't mean it's cancer, it can just be the joy of ageing or something that has been there since you were born.  After all we don't routinely have these tests done!

I am sure you will feel more positive once you have a treatment plan.  I won't lie, I still worry about reoccurrence and spread but it isn't in my head all day everyday and 14 months after diagnosis and treatment life is getting back to normal and cancer is not at the top of the agenda!

Wishing you all the best x

I can totally relate to this too.  My letter arrived this week.  All my appointments had been made by phone, so the letters for those have been arriving late etc.   And with Christmas/New Year it has all been rather complicated - yet tests etc have been arranged very promptly to be fair.
I'm also struggling emotionally/mentally with the waiting game.  I'm hoping now I've had the written diagnosis and a PET scan yesterday, that next week's appointment will be the last 'bombshell' (although obviously I'm hoping it isn't another bombshell at all) and treatment plans can be made.
I'm trying to think practically too. I've now got two pairs of button up PJs, I'm thinking about blouses and dresses with buttons (although remembered this morning I also have two zip up jump suits - soft jersey, so hopefully ok if I have DIEP).  A chat with Maggie's also reminded me that it would be good to move stuff I use regularly to lower shelves etc - I'm thinking of moving 'over the head' clothes from my drawers to the wardrobe and button ups into the drawers.  Even if I need help to dress at first, at least I'll be able to choose my outfit!  #smallwins  And if we move tea/coffee equipment to the work surface, I can also make my own cuppas.
Practicalities, though real, distract me from the fears.  In my case, rather surreally, I'm also trying to see the mastectomy and reconstruction (smaller than I am currently) as a positive - less likelihood of future back issues, cheaper bras from normal high street shops (and VAT refunded), clothes fitting me better (I'm not big overall, just my bust, so getting dresses and tops to fit bust but not be baggy elsewhere has always been an issue for me) and possibly even going down a dress size.  A bit drastic, I know, but silver linings....?!
Still terrified though.  And can't face telling people outside the family and 'need to know' (work and kids' schools) yet.  I've had a lot of loss over the past 10 years and people have often said things like 'oh, you've had such a hard time of it'.  I know they mean well, and yes it has been hard, but I don't want pity and I feel I'll get even more now if they know about my diagnosis.  I'm me, not a pathetic, tragic person.
A bit of a ramble and about my worries, but my point is, I can relate, we're going through similar fears, it is terrifying but we'll get through it - somehow.  I hope this and the other comments can bring some comfort. xx

Hi everybody, thank you sooo much for your replies.  I have only just seen them because I was rushed to hospital after a delayed reaction to the contrast dye used in my second mammogram and also then my CT scan the next day - essentially I had two doses of contrast dye in 24 hours = an overdose which nobody thought about!.

I was red raw, itchy, bumpy and couldn't breathe - very scary!

I'm still in hospital so today my daughter is coming to wheel me down to the BC Unit for my care planning appointment with my Consultant.

Whatever he says today re planned treatment will be subject to my bone scan on Monday (scared stiff about that because I have to have another injection). 

So I have been awake since 4 am and remembered this forum.

Hopefully the treatment plan will not be too challenging - I had BC in my right breast in 2013 and sailed through Lumpectomy and radiotherapy with no problems but that was just under 13 years ago!

I hope everybody is alright and managing.

No doubt I will post what the consultant has to say!

Hi SiwanH,

Oh how I love that ‘I'm me, not a pathetic, tragic person’

I feel exactly the same. Don’t want to tell anyone who doesn’t ‘need to know’ as just want to be the same and treated the same.

My close friends who know, have been so supportive, but even one of them has that attitude of ‘oh, should you really be doing that’ and ‘shouldn’t you be resting’. Yes! if I want to do it, I’ll do it, I just want life to be normal. 

I had my PET scan after they spotted something on my lung and liver during my CT scan. This was followed by an armpit ultrasound and biopsy on both armpits. Obviously fearing the worst and assuming it has spread, the waiting is hard. 
i had my meeting yesterday with my ‘Breast Care surgeon’. So anxious and nervous and nearly 2 hours late going in. 

my news, thankfully, was it hasn’t spread. Still got chemotherapy to look forward to but he’s recommended me for a new tablet. This will shrink ‘it’ and could even prevent the need for surgery. My waiting game now is to see the oncologist to confirm if I am eligible for them. 
Already on Letrozole which is supposed to already be helping to shrink ‘it’.

 Now they’ve told me it hasn’t spread, I can kind of see the way forward. And even if it’s normal chemo followed by surgery, I’m ready for it. If surgery then I want either flat or reconstruction and breast reduction to match. How lovely to think of buying something that actually fits properly and possibly smaller size bras, not having to turn the size label away so people in the shop can’t see how massive I am. (G).

if flat, I can by T-shirts and crop tops. Woo hoo.

Regarding letters, I dread the ‘copy to the Dr letters’ because I hate reading about it. I’ve been told, I don’t need to see it in print too. I’ve now asked if they will stop sending me a copy. If I need to see one, I can always ask. 

Sorry, I too now am rambling, but it helps. 
hope some of this can help someone else too. 

Best wishes everyone and Rusty53x.
Sending massive hugs.