Hi. I’m a noob (as my daughter would say!) to the group. Actually, I’m a noob to all of this. 
I am 54, and was diagnosed on Jan 28 as having an invasive lobular carcinoma on the outside of my right breast. It has spread to the lymph nodes but has not apparently spread anywhere else. They tell me that the lump is at least 4.5 cm, and probably bigger.
I am scheduled for 6 sessions of chemo (3 FEC + 3T) to be starting ASAP, probably within two weeks. Then a mastectomy on that side.
I have a 12 year old daughter (soon to be 13, but going on 23!), and a ten year old son who has autism. My daughter knows about my diagnosis; my son does not. He just knows that mama has an ouch in her boob and that he has to be careful when he hugs me on that side.
I was supposed to have an MRI on Friday, but it was rescheduled for tomorrow. The surgeon told me NOT to have a COVID jab; the oncologist did. They say I will get a text soon because they have added me to the CEV list.
I guess I am just waiting now. I think I am waiting for a start date for chemo, and also waiting on some blood results, DPD in particular.
I don’t know what to do. I don’t know what I should be doing. Some days I’m fine; some days I have zero ambition and motivation.
I had to come off HRT because the cancer is estrogen-sensitive. I’m terrified of my peri- menopausal brain fog coming back.
I’m stressing because I don’t know anything specific about reconstruction. Apparently sometimes they do it when they do the mastectomy. Also apparently because of COVID, they aren’t doing anything “extra” in terms of surgery. So I am wondering if it will even be an option.
I have extremely large breasts (40 F) and they have said that the right one will be taken completely off.
The silver lining is that I have always wanted a reduction! So now I will have one! Yay! (It’s ok to laugh at that!).
What worries me is that they won’t be able to do anything to the left side immediately because of COVID. I don’t want to be walking around with one HUGE one on one side, and nothing on the other! Aside from walking crooked and looking crooked, what will I do for bras? Wear my old one to support the left, and then stick a sock in the right? That’s a serious question, btw!
Also, I am more terrified of losing my hair than I am of a mastectomy. I thought that I would be ok with caps and turbans. Then I tried one on, and I decided that I don’t want to walk around looking perpetually like I have just stepped out of the shower!
I have tried to research wigs, but there seems to be so much information, and so much terminology (weft, hand-tied, etc.) that I am overwhelmed. I don’t know where to begin. I don’t know if I should buy one now, so I have it ready, or just wait.
Also, I find it very stressful to tell people, because I find that I end up having to comfort THEM! And I say the same things over and over again.
Anyway. Thanks for listening. I have been reading a few posts here and there, and this seems like a lovely group. Looking forward to chatting with all of you.
Hi A Squared (sorry can't seem to tag you with the gap in the middle),
Gosh, you really do have a lot on your plate at the moment. I didn't have a mastectomy, but my sister in law did and she was large breasted. She had a false boob that she put in her bra and you would never have known. I think she got this from the hospital, but it was years ago.
I really don't know how Covid is impacting whether they can do an immediate reconstruction, but that's definitely one question to ask your team, but be reassured that the false boob looks totally normal under clothes in the meantime.
A former colleague was diagnosed with HER2 cancer shortly after me (mine was ER+, so no chemo about 3.5 years ago) and she had chemo. and lost her hair. We met for a drink and I had to ask if she was wearing a wig it looked SO good. She got it free from the hospital.
I can remember the 'telling everyone' - when I told people it was "so and so had it and they were fine" - really irritating as if they were dismissive of the fact I had cancer and it is a huge mental impact when you get told isn't it? Everyone reacts differently, but perhaps just for the time being just let the people who need to know about it as you come to terms with the diagnosis yourself- ie the ones that are going to have to help you through it.
Here's a link with a response from Macmillan with lots of useful tips for telling an autistic child about a cancer diagnosis (although older than your son).
Hopefully other ladies will be here shortly to offer some more advice,
Kindest wishes,
Lesley
