Hey lovely. Chemo has been super hard if I’m honest. It’s the hardest part by a country mile and has wiped me out of life from March 21st until what will be the end of July. However, I’ve got through it with an amazing group of girls on here. I found EC much better than Docetaxel while some find it the other way around. I shaved my hair after the first cycle and just before second so my hair hasn’t ruled me which helped.
This may sound a bit creepy but there have been more upsides to cancer than downsides for me. I used to worry about everything and have awful anxiety. I don’t really care about much these days because I truly know what matters now. Some people have been off the chart amazing while others have just dropped by the wayside once the initial excitement of ‘cancer’ subsided. Some family have surprised me with their brilliance while others have shown their inability to communicate emotion. Most of it gives you an insight into the fear that others feel about your cancer. Most stupid responses are actually about them and not you. I think someone should create a ‘cancer bingo’ game of stupid things people say to you that make no sense. 
As for your daughter, maybe consider holding off telling her until you’re working with definitives. It’s different as my kids are younger (15/13/9) so we waited for a firm plan and prognosis (like with you, the wait for the HER2 result was the slowest bit and determined whether chemo came before surgery or after). 21 sounds grown up but it really isn’t. She is still very young so maybe consider waiting as her emotions will be another thing for you to take on once she knows. I personally preferred giving a fixed plan with reassurance and the kids have coped so well because of it. Having pure honest facts seems to have been a big part of that.
I’d be amazed if they’ve booked you in for a specialist ultrasound to follow up an MRI and aren’t doing an ultrasound guided biopsy in that session. I’m also disappointed that your consultant just gave you results by showing you a screen and not explaining anything.
This may sound odd but whether it’s HER2-ve or +ve, you got a decent cancer to get in terms of therapies on offer. ER+ is the best. PR+ comes with some limitations, Hormone Receptor -ve comes with even more complications. ER+ve has a clear pathway and ability to not only block oestrogen production but to also block oestrogen receptors in cells and other drugs to block oestrogen being converted by Aromatases and other drugs that inhibit kinases in cancer cells and basically disrupt cancer cells, enabling your body to kill the cells. That is a drug that has managed to put Stage 4 people in a disease free state. Those aren’t even the chemo! This is all AFTER chemo. The options are incredible for ER+. It’s like a tree diagram of endless hope now that I’m at that stage and starting hormone/endocrine/targeted therapies.
Don’t be afraid to bulldoze your doctor. Don’t be afraid to call your BCN and bulldoze. The power of the BCN is not to be underestimated. Surgeons are a strange bunch. They depend on BCN’s to push things through and make things happen. The BCN’s are where the magic happens in my experience. They are often needed to be the link between a surgeon with surgeon communication skills and ego to enable the surgeon to interact with the rest of the world. Not all surgeons but definitively more than you’d expect. The oncologists tend to have better communication skills and it gets easier from there in
My surgery happened very quickly once the HER2 result came in as -ve and meant it was surgery then chemo. Normally it’s a 2-3 weeks wait for it (private or NHS) and was the most frustrating one to wait for! They booked provisional surgery while waiting for the HER2 though which helped speed things along.
The main thing to know is whether you’ll need radio (normally you do with IDC and nodes). This delays reconstruction. Radiotherapy has a very high change of ruining a reconstruction so you have to delay it until after. In a weird way, I found that focussed the mind. I’ve had to mourn my left boob and I’ve just made peace with it and suddenly reconstruction feels like the last thing on my mind. I will still reconstruct eventually but my priority is getting my strength back from chemo and being strong again and I’m living to get my taste back from Docetaxel! Life isn’t fun when you can’t taste any food
I hope this makes you feel better rather than worse. There’s a lot of positives in your type of cancer but really don’t be afraid to bulldoze. Even if you call the breast clinic where you’re having the scan and ask why they’re not doing a biopsy. We have an awful NHS hospital near us and I had to go there for my specialist scan and they were actually slick as can be and did ultrasound + biopsy + marker then mammogram and then another ultrasound, all in 45 mins on my follow up ultrasound. I didn’t know they were covering so much ground before I went in so hopefully they’ll surprise you.
Also, be aware that your cancer Grade can change from biopsy to mastectomy. Mine was Grade 3 in biopsy but after they removed it the pathology came back as Grade 2 so less aggressive (HER2 -ve is less aggressive but there are pro’s and con’s to both in long term prognosis and chemo treatments etc so don’t sweat that result too much!).
Start thinking about what you want. A lot of people are desperate for ‘only’ a lumpectomy. But then I’ve seen so many people have three ops just to get clear margins which comes with a lot of scar tissue and operations and recoveries. I personally told them to not even offer a lumpectomy. I wanted maximum margins. A half missing boob is as bad as a whole missing boob. It’s still not a boob in my head if my nipple is gone (as with all ductal carcinomas) and half the breast tissue is gone. It felt better to make it a complete operation with better margins and then fix it another day after genetics are back (they take 3 months) and I know if another boob needs to go.
They’re not going horribly slowly on yours at all. The diagnostics take forever. You’re through most of it now and the next specialist scan, if it’s only lymph nodes, doesn’t necessarily change much. If they’re suspecting node involvement then it just adds an axillary clearance rather than just sentinel node removal. It may not actually delay it much at all but the Multi Disciplinary Team need to know to plan and they need your HER2. Your cancer will be taken seriously as it’s Invasive rather than In Situ so it automatically a Stage 2 and possibly 3, depending on how many nodes there are. That sounds scary but it really isn’t a huge deal from a prognosis point of view. Surgery is great but so much of the magic happens in chemo and radio and drugs with breast cancer. Surgery is 50% of your prognosis. That’s it.
Keep your chins up this weekend and know there is a gargantuan tree diagram of options ahead of you, not one option and fingers crossed. The arsenal against your cancer is enormous and so many permutations exist to fight it so, while it’s overwhelming, there is soooooo much hope. Xxx
. I had a horrific day on Monday, was bored at home, feeling sorry for myself and did the ultimate stupid thing of researching prognosis (this scared the crap out of me) and ended up sobbing to my partner for 3 hours because I was scared. But I woke up on Tuesday and thought to myself I am not letting this get me down and take anymore of my life. So I decided to try and do three things every day that makes me happy. This has really helped. Please reach out to the lovely people here because everyone has been added to this club that no one wants to be apart of but we all know how it feels:sparkling_heart:
and that you have to wait for reconstruction. Do they build a new nipple and can you ask for reconstruction at the same time? I also read that if you have a mastectomy then radiation is less likely…
it’s not always the worst case… Try not to panic until you have the full picture. Sending hugs and positive vibes xx