Anyone else in limbo?
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Ratbag
Member Posts: 34 ✭
Hi guys, I’m sure many of you are in the same boat and wondering what you have been advised. I have had a lumpectomy on my right breast and had 5 months of dense dose chemo for a triple neg grade 3 cancer. I was supposed to start radiation treatment in early Jan, but my surgeon wanted to wait for my genetic test results so it was cancelled. Turned out I have BRCA 2, so I had my ovaries and tubes removed 3 weeks ago. I decided to have a double mastectomy and reconstruction. Because I couldn’t get into a plastic surgeon until 2 weeks ago roughly, the day I saw him was the day the gov announced only urgent surgeries would go ahead. I am now in limbo because I have heard nothing from my surgeon (have called twice and been told they will call me). I am worried because I didn’t have the radiation treatment, (daily for 6 weeks) and now may not be able to have my surgery. Will I have to go back and have radiation, I don’t know. I will call again on Monday, but the not knowing is worse than having an answer. Wondering what outcomes others have had in the same situation? Love to all.
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Hi @Ratbag I’m feeling like I’m in limbo as well, but not for the same reason. After seeing oncologist and using Zoom to talk to radiation oncologist in the last week I’m waiting to see if I can or cannot start radiation. If not I’ll be starting on Anastrozole (I think).Maybe your team of doctors have to meet to decide what’s the best way forward at this time for you. Have you a breast nurse who can find out information for you?It’s not a nice time to have anything wrong at the moment.Take care xx2
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Hi @Jwrenn, hope you find out your plan of attack soon too. I have found that there is little communication between the different treating doctors where I am. I had my first contact by phone from a breast care nurse after 8 weeks of chemo. Can’t say it’s been a smooth ride. If I don’t follow things up myself, I feel that I will just be forgotten.Hopefully I will get an answer Monday, or I will contact my oncologist and see if she can get the answers for me. Yes, it’s not a good time to have other medical conditions. XX0
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@Ratbag I have found I need to be my own advocate and have rung the breast care nurse when I thought something was taking to long such as getting appointments with the oncologists. I’m not sure if it’s because I’m a public patient and it does take a bit longer for everything to happen but I was diagnosed just before Christmas and that mucked things up at the time, as my gp went on holidays. After getting a letter about my appointment a day to late as it came after i saw the oncologist , sometimes you just have to do what you have to do.
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@Ratbag I was due to have my mastectomy and recon 17 April.....recon has been cancelled.
Now it’s just mastectomy, IF I don’t get this stupid virus and IF the hospital doesn’t have Covid..
its a small private hospital. This was the last stage for me, I have had chemo and radio.
Recon now next year. A little disappointed but I am seeing positives too. Just praying I get my op in before the you know what hits the fan. Need to get this sucker out!
My family have been great and we have been in total lockdown for three weeks now.
Limbo is an excellent way to describe it.
Caz x0
