Introducing Deb P

[Debster2016]

Hi. First post. Diagnosed with grade 2 stage 2 invasive ductal carcinoma 4 weeks ago. Final diagnosis is its 80mm in total. It's a biggie. Heading for full mastectomy in a week. Have been in high state of anxiet due to continuously reading contradictory information PLUS no continuity with NHS staff as have seen someone different at every appointment (oh except 1 where brewer cancer care nurse was the same. But only once. Have now seen 3). Has made it impossible to know, understand and as such deal with what is happening. I empathise & sympathise with anyone else experiencing this. It makes a difficult situation impossible. So lucky as screening detected and no children. And good husband.

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I wish you all the best with your journey. It's not good to see different staff all the time. I don't really know what you can do about it but you could mention your concerns. Occasionally it can be good to see someone different foe a different point if view but not in early stages. Good luck xx

[Debster2016 in reply to Hidden]

Thank you for your message Christie. Indeed I vented - as politely as possible under the circumstances - with breast care nurse yesterday who seems to be taking me through my surgery so that's good. Roll on 2017!! xx

[Debs1962]

Hi Deb, sorry to hear you diagnoses I had a mastectomy in May 2015, mine was also ductal, what type of cancer have you got? Mine was ER+ so I am now on letrozole, did not have to have radiotherapy as I opted for mastectomy rather than lumpectomy. I assume they have told you they will test the nodes? At my hospital they tested the centinal node near the tumour putting in special dye the day before op, got result a week after op, if that had been positive for cells then further nodes would have to be taken out and tested, the type of cancer and wether nodes are involved will decide what treatment you end up having, I assume you have been told all this?

I wish you well and good luck with your treatment, we are all hear to support you and help, and most important know how you are feeling, so keep in touch.

Deb x

[Debster2016 in reply to Debs1962]

Hi Deb many thanks for your message. It's IDC stage 2 grade 2 hormone +ve & I think er -ve. Opted for mastectomy at mtg with 2nd surgeon believing immediate reconstruction was an option (as per 1st breast cancer care nurse and online literature) only to be thrown into panic by radiologist (2nd biopsy immediately following same mtg) saying no, that won't happen, itself immediately followed by that surgeon declining to discuss further - it was almost lunchtime after all - & referring me back to original surgeon! Talk about distress. Next meeting 10 yes 10 days later - 3rd surgeon! - & I asked specifically what in my condition means mastectomy and not lumpectomy. She said It's the 2nd site confirmed malignant at 2nd biopsy (which was 10 days earlier) plus the tiny little bits in between making it large at 8cm.

Both 1st & 3rd surgeon have said radiotherapy then yesterday 3rd breast care nurse said no, radio only with lumpectomy......

Back to the nurse today then with specific question for her to ask surgeon and so advise us both as to why I would get radiation. I believe it's due to the size and as such proximity to nipple and outer skin......l

Bless you Deb this is the first time it's made sense to me! by writing it down! I've been confused and distressed for the past 5 weeks. It's a relief to feel calm now that my brain is calm.

Re nodes dictating subsequent treatment. No this wasn't explained to me - or at least not in a way I understood - but as from yesterday I do now understand this.

I am having a sentinel node biopsy during mastectomy so any node clearance will be done at the same time, luckily. My results mtg is Dec 16, 9 days post op.

Cant thank you enough for your words and support 😌 X

[Jacbowden]

Poor girl, sorry to hear about your diagnosis. It's a bit of a minefield in the NHS I believe (I live in Australia, but am English and spend quite a lot of time there). All I can advise is to help yourself wherever you can by making lists and asking questions when you do get to see the right person. It's amazing what our mind can accept eventually, and here you are already looking for the positives. I wish you the very best outcome. 🌺

[Debster2016 in reply to Jacbowden]

Hey thanks for the advice. I gave many lists! And lots of notes. Have been too confused to even formulate questions! But the process is beginning to make sense to me now. Lovely to hear from you, thank you 😊

[Debs1962]

Basically Deb you need to be clear with your doctor on what type you have and it can be more than one type ER+ or ER - then her2 + or her2 - then PR + or PR -

Sentinel node result I didn't get until a week after surgery, then further surgery would have taken place if they result had been positive for cells etc

Both myself and the girl in the bed next to me had mastectomy with reconstruction with implant at the same time, she had been told she was Her2 + so knew she would have to have chemo in her treatment plan as well as letrozole as she was also ER + when she got her sentinel node result She got result that meant more surgery to remove nodes to check for cells.

Her2 + automatically means chemo and herceptin treatment

ER + will be hormone treatment with tamoxifen if before menopause and letrozole after menopause, chemo will depend on if nodes are affected and sometimes size of Tumour I think.

Not sure what treatment PR positive they do, Tripple negative means all three are negative, so the receptors on the tumour are not feed by estrogen or progesterone.

Hope this makes some sense!

Info is the key then you can make the right choice for you and your cancer.

Deb xx

[Debster2016]

Oh you're brilliant Deb thank you. Have checked, I'm ER+ve and HER2 - ve. Will ask about the mastectomy + I'm rebuild AFTER chemo. Waiting for nurse to call me back. Many thanks x

[lovesradio]

Good luck Debster2016. It's all a confusing minefield at the start and if you can, take an empathetic friend with you to appointments as a lot of the time I didn't really take in what I was being told very well. Different health boards hve different treatment protocols though are beginning to work on National Care Pathways. Get as much info as you need or want at each stage of your treatment. x

[Debster2016]

Thanks lovesradio for the advice. Luckily for me my husband has come with me and he's good at remembering what I've forgotten and he asks questions for me. I know I'm lucky in this.

Spoke to my nurse last Thursday and - finally! - was Offered a(nother) meeting with 'my' breast surgeon but didn't have time available before surgery next Wednesday so instead scheduled telephone conversation for the next day with said breast surgeon.

What a relief! What an invaluable conversation! Finally i am calm 😌.

And! Both nurse and surgeon now know I need as much info as I can absorb and if I don't get it I will keep going back and asking.