Breast mastectomy done, now follow up op to remove lymph nodes.

URGENT - time running out ...

Wednesday 5th February 2019 I go to see doctor as concerned about slight seepage & crusting on left nipple.

Referred via "2 week emergency referral" to local hospital. 

Attend first hospital appointment on Wednesday 20th February 2019.
Tests done: mammogram on both breasts, x-ray, scan on affected breast (right hand side).

A week later on Friday 1st March return to hospital for results.

Told it is definitely cancer, aggressive, tumour is less than 1cm long, booked in for breast op on 7th March, my decision to go for local removal or full mastectomy. Assigned a cancer nurse but she is on holiday at the time. Given her name an number to take away.

Decide to go for full mastectomy after talking through with friends and family. No reply when phoning cancer nurse.

Mastectomy op done on Thursday 7th March, all goes very well, overnight stay, recovery good, no pain, arm now fully functioning.
Still no sign of my assigned cancer nurse.

Follow up appointment with consultant for post-op results cancelled as not all test results returned in time for multidisciplinary team meeting. Then consultant is on holiday for a week.

Follow up appointment finally made on Friday 5th April.

The tumour was not 1cm but 7.3cm. Only one lymph node affected and apparently a discrepancy between pathology report and team report, pathology report said extra capsular cells detected outside node. Consultant advises second op to remove remaining lymph glands under arm just on case.

Met assigned cancer nurse for first time at this appointment,  but there was no discussion with her after seeing the consultant. Instead she hands me a charity goody bag - very nice - but she legs it off down the hospital corridor as fast as you like. If I spoke to her for more than 10 seconds that would be an exaggeration

I have been for the pre op assessment for lymph node removal last Friday 12th April.
Managed to see the other cancer nurse - not assigned to me - who I met previously and was covering for her colleague. She is lovely. I'd asked at the check in desk and she just happened to be there at the same time so went and had a brief discussion in her room.

Mentioned that I am now concerned about the other breast as the nipple is occasionally turning inwards now which is not a good sign. She said to mention it to consultant when I go in for lymph node operation this Thursday 18th April, but that it is best to take things one step at a time and the operation comes first. She said If necessary a full scan may follow at some stage after this lymph op. She then had to go as she had to be with someone else on an appointment so there you go, back home and time to think and have more questions that need answers.

I am going crazy here. How come the initial scans showed 1cm tumour and two weeks later under the knife it turns out to be 7.3cm tumour. And why wasn't anything picked up on my other breast when I was in for the original tests? And if it is showing external signs now what is underneath and how fast is it growing? When will I get a scan? Is this an indication that the cancer has already jumped ship, or there are cancer cells elsewhere? What does a full scan do and can it pick up cancers elsewhere? If so why do I have to wait until after the lymph operation and then recovery and healing before I can have a scan?  If the cancer in left breast is the same aggressive cancer as in the other - 1cm to 7.3 cm in 2 weeks! - doesn't it need sorting sooner rather than later?!!

Looks like it will be more & more weeks down the line before anything is done, and lready 6 weeks down the line from a full mastectomy and nowhere near any follow up treatment (chemo, radiotherapy etc.). Feel like I am waiting for an eternity to find out the state of play. 

Worried sick naturally, but just wondering if it's worth paying privately to have full scan now rather than later so I get to know earlier what I'm up against. Can't really afford it but will do it if it helps speed things up, you only have one life!

Medically speaking is this something you can do in my situation, or is this just not the way that treatment for breast cancer - or any cancer - is approached?

Help! :(