MRI results and (some of my) treatment plan today.

[DestinyIsAll]

Covid doesn’t seem (from everything that’s been said/referred to so far) to be an issue at my hospital, in terms of affecting treatment. Suffolk where I am, and Norfolk where the hospital is, have had some of the lowest infection rates in the country and I know last week when I was there it had no cases. Still many strict precautions but it hasn’t changed any of my treatment plan. NHS in my area (and prob nationwide?) are using local private hospitals (eg Spire) for the ops, which have remained completely ‘clean’ from Covid. Swab 3 days before op date. 

Onc breast surgeon is just offering the immediate reconstruction as a potential suitable/preferred option...I said all things considered I would probably opt for immediate rather than delayed reconstruction as my preference and he was very supportive of that. I believe it will completely depend on my SLNB results being clear, and I have to see the plastics surgeon first anyway to ascertain what might be my best option, e.g., implant or one of the skin flap surgeries. Onc surgeon has also said symmetry surgery can/will be done to even me up, but I don’t know the timescale for that. Likely same time if implant, or later if flap as that’s such a long surgery. 

So much to think about and research, the same for you I’m sure.

I’m used to my hereditary condition causing complications In any medical scenario...it’s very rare so it’s really rare that any doctor has heard of it let alone met a patient with it. It’s always fine (had other, though more minor surgeries before) , just have to get all the info and precautionary measures in place first. xx

[Jo22]

Aah yes my friend recommended Working Moms too! I'll give it a go, thanks. 👍 One of the shows I watched was Motherland which is a similar sort of thing I think but based in the UK. 

Gosh, sounds like you have a real plateful in terms of your other condition. I am sorry it's complicated and I do hope you get a clear plan soon. I think you mentioned mastectomy before, how are doing on your decision for (or not for) reconstruction? Are they even offering it because of covid? When this all started I was all for a bilateral mastectomy and getting some new pert boobs - thank you very much. 😃 

Yes a step back is definitely a good thing. Take some time out, while they sort out the details. ❤️ 

[DestinyIsAll]

Hi Jo,

Don’t apologise 🙂💐 I absolutely get what you mean about ‘de-cancering’ yourself. It’s necessary I think to try and have time away from the cancer bubble, it all gets so overwhelming at times. (I just finished Working’ Moms’ on Netflix if you have it..funny, short episodes, good escapism).

Please post if you want any support leading up to Wed, and yes please update how things go, when you can. Wishing you luck and good post op vibes, I will be thinking of you.

I definitely have to have mastectomy unfortunately, bigger tumour is deeply attached under the nipple and the other is in a separate quadrant, mastectomy is my only option. I accepted that from early on and have now moved my thoughts on to start thinking about types of reconstruction.

They want to establish first if nodes are clear (fingers crossed), hence SLNB and results first before mastectomy. This clarifies if further node removal is required and what adjuvant treatments would be needed, so may enable possible reconstruction at the same time as my mastectomy. It’s a delay, but I’m okay with it in the context.

I’m a bit stuck in the midst of pre op prep - I have a genetic immune condition that complicates surgery and anaesthetic so have to have lots of back and forth liaising, calls and letters with my immunologists and the breast surgery team to make sure everyone’s happy...we’ll get there. I’d like to get it sorted and then step back a little too for a few days before my first op. xx

[Jo22]

Hi Louise! So nice to hear from you! Sorry I was absent for awhile needed to de-cancer my thoughts for a couple of days. With the isolation & rain I was slowly going crazy but totally fine now after watching some bad but funny films & box sets.

Great that you've got your hubby at home full time and obviously your daughter too. Really good news on the tumour sizes and grades. I presume lumpectomy & radiotherapy then, fingers crossed? 

I'm starting to get nervous about my op on weds but also keen to just get started. 2 lumps & sentinel nodes all being well. I'll let you know how it gores.

Take care & I hope they give you some updates soon.. Jo xxx

[DestinyIsAll]

Hi Jo,

Checking how you are doing? 

My husband has been given the go ahead to work from home during my isolation before and after my first op, which is good. His MD is notoriously unsupportive of home working so this is unexpected but I’m glad. 

My eldest daughter (23), who lives at home and I’m close to, is working from home still and she’s offered to isolate with me which is lovely of her. If she gets terribly bored and stir crazy I’ll offer to release her 😊

I had more detailed info through today of the two tumours, one is grade 2 20mm, the other is grade 1, 11mm. It made me feel a little better that there wasn’t quite as much hideous tumour in there as I’d imagined. 

I hope you’re able to keep your spirits up x

[EJBSinger]

The waiting is the worst. My life is on hold and my autistic daughter and partner are bearing the brunt of my moods. It has to get better surely.

much love and hugs - I’m trying to focus on the joy in everyday things but it can be hard x

[DestinyIsAll]

Hi Jo, thanks for your message - hope you’re doing okay too. 

Re the lymph nodes, I understand there’s no clear indication there is spread to my lymph nodes (and everything crossed there isn’t), so they prefer to biopsy the first nodes, get the result, if clear then all good, if not they then can plan any further removal or clearance along with the mastectomy if required. 

That’s basically what I understand of it, but I’m not certain I have all the facts or fully understand so I will double check that, I should be speaking to my BCN maybe tomorrow.

Louise x

T

[Jo22]

Hi Louise,

I was thinking of you all day, it sounds like it was very hard, I'm sorry. But you are further along your, for want of a better word, journey, and have more info. But yes the waiting is the worst of all.  Good that it's HER2- fingers crossed on the fluid. Sorry to ask and you don't have to answer, but why aren't they doing the mastectomy at the same time as your node removal?

I'm so sorry you have to join the complete isolation gang, it is hard not to get the hugs and human contact but it does give you time to process all the things going on. I found being allowed to "just be" with no distractions was therapeutic and I wrote a lot of things down to get it out of my head. 

Take care. Jo x

[DestinyIsAll]

Recently diagnosed (previously posted about this 😊) with grade 2, ER+ BC, mammo, ultrasound and biopsies done 2 weeks ago, mri last week, and two weeks of waiting for more info.  

MRI results today showed I have invasive ductal carcinoma. I now also know; 2 tumours confirmed in right breast (no measurements given) larger one deeply attached to the nipple so only option is mastectomy, which I expected and fully accept, and it’s HER2 neg. 

I am in in two weeks for sentinel node biopsy to check for spread, so strict isolating from my family for two weeks before and (new hospital policy) one week after. I also had a further needle aspiration today because I have some fluid build up which can be associated with a type a lymphoma. This is rare apparently so I’m desperately hoping it’s not that (as it can be down to something more routine) and now have everything crossed for fluid and lymph node tests being negative.

No further info given about other post op treatments until the other results both come back and the fuller picture is known. He suggested chemo less likely, probably radiotherapy. 

I had been imagining the absolute worst case scenario in my head, and I’m relieved it wasn’t as bad as I imagined, but I still don’t have all the info so have to wait at least 3 weeks before knowing exactly what I’m facing in full.  

I have a supportive husband and older children so that helps but it’s still hard isn’t it? I think so many agree (from what I read here) that the waiting is such an awful part of it...so much of this ‘journey’ is waiting.  

Sending very best wishes to everyone ❤️ xx