A newbie with a new diagnosis and a big decision to make...

[monicanatura]

Hi Evie-S 

Thank you, we are all very lucky to have each other. 😁😁

[Cheryl09]

Thank you so much for your replies - I really appreciate it. This forum is proving very valuable to me as I don't know anyone who's been through this. 

This is a brand new world for me, and you have no idea what's out there, or the support you can have until you need it. I've booked into a Look Good, Feel Better workshop and have signed up for Someone Like Me. I'm going to have a look to see if I can post what I'm finding out for other newbies who are also finding it a bit overwhelming or may not know what's out there. 

My feeling is that I'm going to go ahead with chemo first (starting in two weeks). I feel that I've had a couple of weeks to learn about it and to try and prepare (as much as possible) emotionally, whereas the mastectomy blindsided me and I would also like to learn about reconstruction options and get some support before it happens (which would be in three weeks). 

Thanks again for your words and advice - sending you all a big sunny virtual hug 

[Evie-S]

Monicanatura - what a great post, I love your last para about it making us stronger. Thanks for that 😊

Evie xx

[monicanatura]

Hi Cheryl09

Welcome to the forum, I found this amazing forum last May when I was Diagnosed, it helped so much. 

I had IDC with DCIS, I had neo adjuvant chemo, due to the tumour being 9cm, and I had lymph node involvement. 

I had my mastectomy in Dec 18, then Radiotherapy in Feb, which finished on March 11th. 

We all have different stories, I took on board everything my team told me. I’m happy I had neo adjuvant chemo, it shrunk the tumour significantly, surgery removed the rest of the tumour and lymph nodes. It is a very challenging time, however this journey you are on, will make you stronger, and this time next year, you will be post treatments. 

Lots of luck. 

[Saffyalice]

Hello hon 

im new to this also I was told 2 week ago that I had early stage cancer I'm 45 and thought they do mammograms from 40 in oz so I thought I will go nothing to loose nothing wrong no lumps or bumps but them I got a call to say I need further testing that's when 2 weeks ago I had a cluster of calcifications 8cm long so big! So on Thursday just gone had a mastectomy with a expander on place I Find out next week if I need radiation then reconstruction will start 3/4 months they are going to take expander out replace with an implant and then reduce the other side and give them a lift! I was an e cup but hopefully going to a c cup! Not had chance to think about it all keep me posted how you are

thanks Sam 

[kathyx]

I've been told by several people that an LD reconstruction is often cosmetically better than many other types , which was why I was happy to wait a year to have it. I always encourage people to take the longer view because, for me, the inconvenience of spending a year with only one boob was worth it, considering I've spent over 30 trouble free years with what I was given.

[Evie-S]

Hi Cheryl

First of all a big welcome to you to this forum where you will find lots of support and advice. Your story sounds very similar to my own, so I wanted to share in case it helps. I remember all too well my GP saying my lump doesn’t feel sinister but referring me just to be 100% sure, and then being shocked to get the diagnosis of IDC.

I had a lump plus some DCIS plus node involvement, and had chemo, mastectomy and radiotherapy in that order. I was also asked to choose whether to have chemo or surgery first, my team said both options are the same in terms of survival. It was all a bit of a blur but I think I chose chemo first to give me time to think about reconstruction options.

As I had DCIS and the lump and am small breasted, a lumpectomy wasn’t an option. I chose immediate recon with an implant. Surgeons are, as you say, reluctant to do implants before radiotherapy because of the risk of hardening of the scar/implant, but mine was in a Braxon sling on top of the muscle, which is supposed to reduce the risk. Fingers crossed!

It’s good to read Kathy’s experience of how her recon looks and matches, thanks for sharing Kathy. I’m happy enough with my implant, but it doesn’t look the same as my real one, it’s more rounded. I use a prosthesis over my real one to even things up under clothes.

I’m very happy to chat more or try to answer any questions.

Sending hugs 🤗🤗

Evie xx

[kathyx]

I'm no expert but I think that if the tumour would need too large a lumpectomy (either because of size or position) then , cosmetically, you're better with a mastectomy and reconstruction, but definitely ask. Knowledge is power in this situation.

[Cheryl09]

Thank you so much for taking the time to reply. I really appreciate it 

And yes, thank you that does make me feel better from what I was thinking! Seems silly that I was worried about it, but I think there's no such thing as a silly question or worry in times like these. 

All I've been told so far is that the lump has gone over two quadrants and is a lot larger than they initially thought, thus the mastectomy. I also know it's the hormone sensitive type of cancer. The doctor told me that even though chemotherapy will not shrink it enough, that I will still need to have it, and radiotherapy - but now you ask, I'm not sure why. I'll ask my lovely breast nurse tomorrow. 

Thanks again, it's good to hear a positive story. x 

[kathyx]

To answer your last point - when I had a mastectomy I also had a breast reduction on the other side because, as the surgeon said "we can't match the droop". 30 years later, they still match pretty well, certainly not the scenario you're envisaging.

I had chemo before surgery but that was for a specific purpose, to reduce the tumour before a lumpectomy, so different from you. In your situation, I'd give some thought to your existing plans for the summer - chemo's a longish process which could see you out of action for a couple of months whereas, all being well, recovering from a mastectomy would be a much shorter process.

Just to add, many of us have had dramatic results with chemo and so I wonder why you're being definitely told you need a mastectomy at this stage - was that explained to you?

[Cheryl09]

Hello lovely ladies, 

I've been reading this forum for a few days and can't say enough how helpful and supportive everyone is here - I'm hoping very much that you will help me and share some of your support and wisdom as I don't have anyone else to talk to.  

I was diagnosed with grade 2 invasive lobular breast cancer in my right breast last Monday. It's also been found in one of my lymph nodes. It's been a surreal and teary four weeks with an avalanche of bad news starting with the "it's probably nothing" conversations, to having blood tests and scans, having a date booked in for chemo, to being told today that I need to have a mastectomy, chemotherapy and radiation therapy and be on medication for a few years. 

I've spent the last week getting my head around the fact I need chemotherapy, no-one talked to me about a mastectomy so it's come as a complete and horrifying shock.  

I'm a bit overwhelmed by it all, I went to the clinic today thinking I was just going to have an ultrasound on my right breast, and came out with all of this. The doctor doing my ultrasound, who I'd never met before, just told me as she was doing a biopsy on my left breast. (Apparently something showed up from my MRI - no one told me that either, but she said it looks innocent). 

My doctor told me later that I definitely would have to have a single mastectomy and chemotherapy and has asked that I decide in which order to have them (by our appointment next Thursday). He said that he wouldn't do reconstruction immediately as radiotherapy affects the implant, and that it would need to happen 8-10 months after radiotherapy finishes - but I've been reading different opinions and options on this forum. 

I have a date to start chemotherapy and a date to have surgery and I don't know how to chose. 

Also, and I know this might sound silly, if I only have one breast removed and reconstructed when my body ages and naturally changes will I have one perky teenage boob and one saggier more age appropriate one?!  

I'm 42, single, live alone and am very pragmatic. I don't know what to do - I love my boobs  

I would be really grateful for some love, support and advice. 

Thank you,

Cheryl