TNBC- waiting for surgery appt.

Oh CJ W - I can understand where you’re coming from. I was diagnosed TNBC last April, mastectomy in June and radiotherapy in August. I wasn’t offered chemo which I was happy with as I really didn’t want it. Mine was grade 2 , no lymph nodes affected. Initial diagnosis post biopsy and before surgery was high grade DCIS and a lot of it - 7.5 cms!  Micro invasions were found in the post surgery biopsy. But life goes on. I’ve had 3 holidays since, one in the UK and 2 in Florida. I can still swim and cycle and knit - maybe not as well as before. I’m still tight underarm - sometimes it’s like a little apple is lodged in there. I still feel I’m improving and maybe one day won’t even think about being uncomfortable. I’ve never been one for low neck tops so wardrobe hasn’t changed. Breast cancer treatment has improved significantly. It is frustrating trying to get hold on the BCNs but if you aren’t happy with the surgeon assigned you can ask for another one. I hope everything goes well for you. You’re not an imposter - everyone’s journey is different. Stay positive - you’ll get there! Sending hugs.

My mastectomy is Monday morning (the day before my birthday). It feels like I'm not prepared. I cleaned my home but it isn't perfect. I made my will but didn't get it notarized in time. I called a funeral director but he had another appt. I wrote letters to my kids, trying to think of everything they need to know show something happen. 

I'm not trying to be fatalistic, but I don't have a lot of confidence in my surgeon and no, I didn't have a choice. I had a reaction to whatever the numbing injection on my 2nd biopsy because he insisted on giving me more than I needed. The first biopsy doctor listened and barely put any in and I was fine. the second one I was shaking all over and was extremely anxious which is NOT my norm. Now I worry they'll give me too much sedative, which I didn't realize makes one completely dead-like as if in a coma. I don't think they'll listen to me that I don't need as much medicine as other people. The LPN who was left in the room during the 2nd biopsy marked it down as a potential 'benzocaine' allergy. That wouldn't be the injection. But even after I explained it to the surgeon at my pre-opt appt, she didn't comment on that listing as being inaccurate. 

Plus I think I cracked my rib on the other side... 

so. should anyone read this... i would appreciate prayers that I get through this. That my surgeon gets all of the cancer, which it's high on my chest rather than in the fleshy part of the breast. I told her I don't care about how pleasing the scar is, but please make a second incision higher up to make sure she gets it. 

She isn't going to do it. so. 

I have a sense of dread. My intuition is normally on target. I hope it isn't. I'm saying massive prayers for the surgeon that she have clarity of mind and skilled hands during my surgery as well as the person who puts me to sleep. 

Not sure if anyone is read my stuff or not. My mastectomy was a month ago. The surgeon claims she got all of it but says it will probably come back in 1-3 years since I refused chemo. 

But I'm hoping for as long as possible for the sake of my kids. 

My question is, If you've had a mastectomy, did they cut most of the nerves? My surgeon said I won't get that feeling back. It's fine but I wondered if it is normal.  

I asked my surgeon since they can't do a mammogram on that side, how would they monitor if it comes back? And was told I just have to feel for it. So I asked if they would do a ultrasound after a certain period. Nope, only if a lump comes back.

I'm just.... feeling abandoned. But then again I feel fine. Feel like an imposter since I feel fine. My neighbors keep expecting me to keel over and my hair to fall out, but I came out without any pain other than a sore arm and a permanently numb chest. I don't think I should come on this site anymore as I'm not following the protocol expected.  

But she said I'd come back in six months. So I guess I'll just try to keep eating as healthy as I can. Pray. Stay positive.

I keep all of you in my prayers, along with your care teams and this site that offers so much help and compassion. 

Hi CJ W,

I had a double mastectomy last year without reconstruction following a triple negative BC and then finding out I had a BRCA1 mutation. In terms of check up, I alternate between seeing my gynaecologist every 6 months and oncologist every 6 months where they do a physical check of my chest, armpits and collar bones on top of the regular checks I do myself (I moisturise my scars daily, so always have a good feel).

I also have 6 monthly blood tests that amongst other things, check my CA15-3 levels which is a breast cancer tumour marker. It's not 100% accurate, but can indicate breast cancer cells spreading in the body.

I'm living in France, so I'm not sure how this matches up to the UK system, but maybe the blood test could be something to ask your doctors for some reassurance? Since there are limited medical options and you do not want conventional treatment, aside from healthy eating and top notch self care, I suppose it's important that you are self aware to notice any physical changes, changes in your energy levels, persistent pain, etc. as early indicators that something could be going on inside.

In terms of numbness post mastectomy, I found that the feeling can come back a little bit as some nerves can slowly regrow but in general the area is half numb for me 16 months later. Sometimes I get urges to itch, but since I can't fully feel the area it takes a while to work out where I need to scratch and to satisfy the itch! It's something you get used to!

I hope this helps and wish you the best of luck

x

Oh, Thanks so much, Rose. This is very helpful. I'm not in the UK, but the US. I found this site via a friend in the UK who was diagnosed a couple years ago.

I will ask about blood tests. That's a great idea. Thanks about the numbness info too. I only had the left mastectomy but opted for no reconstruction, worried I wouldn't feel any new lumps. 

I really appreciate you sharing your experience. I hope you are cancer free now and remain so. I can't tell you how much it means that you responded.  

I had another thought earlier. Once I finished standard treatment, and before finding out about my genetic mutation and mastectomy, I felt in a similar situation as there were no other treatments to take due to my cancer being triple negative like yours. I saw a herboriste here who I had seen all throughout chemo and had prescribed me various herbal teas to support different organs (with my doctors approval of course). I went back to see her and since I wasn’t taking any other medication at the time she prescribed me two different powders to take to reduce my recurrence risk. Have you already investigated naturopathic treatments that could help you?

i didn’t take them for long as i soon got my genetic results back and started a different medication for a year and had my mastectomy. So I don’t know if they were effective in any way, but it was reassuring to feel like I was doing what I could. 

And yes, I am cancer free and happy 3 years after my initial diagnosis :) 

Hi CJW and Rose 222,

My name is Dylan and I work in the Online Community team. I hope you have been finding it helpful chatting in this forum.

One of our Macmillan nurses came across this thread and wanted to offer some guidance when it comes to alternative treatments.

I'll leave the message from the Macmillan nurse below:  

"Hi Rose 222,

My name is Rachel and I’m one of the cancer information nurses on the support line. It’s great to see that you are doing well and remain cancer free 3 years on from your diagnosis and subsequent specialist led conventional cancer treatment. It’s fantastic that you are using your experience to support others with a similar diagnosis on our forum.

At Macmillan we can’t make recommendations about alternative treatments. Many alternative therapies claim to treat or even cure cancer. But no alternative therapies have ever been proven to cure cancer or slow its growth.

It’s important that anyone considering using alternative therapies talks to their cancer doctor for advice and support. If you do decide to use alternative therapy, it’s important to check that it’s safe. Always check the credentials of the therapist. Alternative therapies can be expensive, and some can cause serious side effects. They can also make you feel unwell and be harmful to your health.

Our nurses are always happy to answer any questions about treatment and follow up. You can contact us via the online community, Online chat, Email or phone on 0808 808 0000. 8am-8pm, 7 days a week. We’re always happy to help."