Hi, I'm new to the group and thought I was doing so well...
I had my diagnosis early February of Invasive Carcinoma grade 2 after a 3 week wait for mammogram, biopsy etc and then 2 weeks for the results. I had a lumpectomy operation and lymph node biopsy in March and 2 weeks after an appointment with the surgeon who told me the 3 nodes removed were clear as were the margins but they upgraded the cancer to grade 3 with 16mm carcinoma with associated high grade DCIS 26mm. I was so happy to hear the nodes and margins were clear but then with the upgrade came the suggestion I may now need chemo.
They have referred me to an oncologist but nearly a month wait which seems incredibly long? My nurse said they are struggling due to covid and are triaging patients. I'm having the Oncotype Dx test to see if I need chemo and won't get the results until I see the oncologist. My mind just won't settle with thoughts that the delay may mean my cancer is more likely to return and feeling semi abandoned with a nearly 6 week wait in total from surgery to seeing an oncologist to even discuss the next phase. Is this normal? How do you manage the wait? I feel so low and trying to get a grip on it. I just want to know so I can prepare myself.
Anyone going through similar?
HI Sunnydays
What you are feeling is normal and the waiting is really the worst part. Although you've had your operation, you're still on the waiting wheel - so no wonder you are struggling. I am guessing that you are ER+ due to the Oncotype DX and potential for not having chemo.
When I was diagnosed the Oncotype DX wasn't used much, so I didn't know about it nor have the test. It was only if my cancer had spread to lymph nodes that would have meant that I would need chemo. I was lucky that it hadn't spread, but I didn't even know about clear margins at that point - it was only when the surgeon said in my follow up that they'd achieved clear margins that I realised if they hadn't, I would have had another operation. So, I had only worried about it spreading to lymph nodes. I think this shows that we worry, but actually there is very little point because it isn't going to change anything - and because I didn't know about it, I couldn't worry, if that makes sense. It's obviously easier said than done to 'not worry', but it really doesn't do any good whatsoever.
With regards to the cancer being more likely to return, I also realised that it doesn't grow that fast. It was well over a month from diagnosis to operation, then over a couple of months before radiotherapy. It hadn't grown whilst I waited for my op. and I've been clear for 5 years in June. (I was grade 2 IDC ER+ and 2 areas of grade 3 DCIS ER neg., totaling an 80mm lumpectomy and unusually, 2 different types).
I do think things are a little slower now due to Covid, but the Oncotype DX gets sent to USA I think and that all takes time, so it probably is normal as that takes a while to come back and for your team to review the results to decide on your treatment.
I can't really say anything other than worrying won't change anything - but we all know that, and the shock of having been diagnosed with cancer is enormous isn't it? Other than tying yourself up with doing things that give you pleasure and hopefully distracting yourself, there isn't much else you can do to cope with the wait. I can remember my partner talking about mundane things that he normally would and me thinking the whole time "who cares? I have cancer!"
Now I look back and think it wasn't that bad after all - hopefully you'll get to that stage in a year or 2. I think it was after my first clear mammogram that I finally felt that I was ok mentally about it all. Each year at mammo. time, I get a bit jittery, but other than that, it's not really at the forefront of my mind any more.
Kindest wishes to you and huge fingers crossed that you don't need the chemo.
Lesley
