The first time I posted on here was about all the waiting between appointments from being referred by the G.P. It seemed to take forever and I think I can honestly say that was the most stressful time of my life. The waiting nearly drove me nuts.
Since then I finally got my High Risk appt (having two preexisting conditions, Bronchiectasis (lung condition) and Methotrexate related Cirrhosis of the Liver.) Once I had that appointment and there was a plan in place as to what surgery (Mastectomy) and an overnight stay in hospital with a HDU bed reserved just in case, I was fine. I can deal with anything once I know what to expect. The surgery was much easier than I thought it would be, I would almost say painless for the first week and now just a little sore under arms (lymph node removal), but overall I’m doing extremely well, no need for an HDU bed at all and I came home the following day just fine.
Now, it’s back to waiting, I got for my results appointment on 1 July. I was told I would normally have had 6-8 weeks of chemo for my type of cancer which is Estrogen pos, Progesterone Neg & HER2 positive, but because of my liver I was told I can’t have chemo. They did the surgery and I’m assuming at this results meeting they will tell me what’s next.
I guess now my mind is back to working overtime again with questions, like if I didn’t have the 6-8 weeks of chemo first, what difference will that make overall? Also if I can’t have chemo and they don’t seem too keen on doing too much radiotherapy either because even though the mastectomy was right side, the radiation could possibly affect my lungs and make them worse. I was just reading about the hormone therapy as nobody has mentioned that yet and it seems that this can also be hard on the liver. So now I’m wondering what on earth are they going to do? I know I’m worrying probably for nothing but until I know I don’t think my mind will switch off.
Does anyone have any ideas???
Well I’ll certainly be glad when the 1 July gets here and I get to know. I’m sure you’re right about chemo being harsh on your liver.
I picked up a booklet from the Macmillan stand at the hospital. It is called “Understanding breast cancer”. Toward the end of the book is gives a detailed run down of all the types of treatments. I thought it was very useful actually.
Isn’t it funny how looking back it’s now been 2 weeks since I came out of hospital after the mastectomy and that 2 weeks has just flown by so quickly. On the other hand waiting for an appointment to get results of something seems to take much longer. Altogether from being discharged it’s about 3 1/2 weeks to get my results but this past 2 weeks seems to have taken at least a month, when you look at it from the waiting perspective. 
Hi again MissP6
Lovely to hear from you again, are you still in the waiting part before they tell you what they’re going to do?
That was the worst part of all, it seemed to take forever once I’d been referred by the GP to get that diagnosis appt, It was just over 2 weeks but felt like 2 months. Then it made matters worse because I had to have a High Risk appt then because of my other conditions so I had to meet with the surgeon and the anesthetist and there was a nurse there as well plus I took 2 friends with me. That appt was more than 2 weeks again but it was at that appt where I got to know properly what they were going to do, and why and the even had an ICU/HDU bed booked for me for after the surgery. I had to stay overnight in hospital because of the risks. I am delighted to say I didn’t need any of that, I came through the surgery without a glitch at all and can honestly say it was kinda pain free. I only had paracetamol twice.
During that time I read every book the MacMillans gave me, I searched the internet for answers, in fact by the time I had had the surgery I felt quite the expert on all things breast cancer Now I’m back to waiting for results of the surgery so that they can decide what further treatment I will have. I tried to do the Predict, but couldn’t because even though I know more about what I have now I still couldn’t fill everything in because there were some things I just didn’t know still. Now I’m looking up all the different treatments available, I know I can’t have Chemo but I’m looking at what the other options are. I’m doing what I’ve done at every other appt, I’ve made a list of questions for the doctor when I see him/her again as no matter what treatment I end up having I’ll have questions ready to ask.
I hope you get your answers quickly and that whatever answers you get they will be better than anything you thought. I know it’s a journey and I’m so grateful there are other people on the same journey who are willing to share. It does make a difference.
Thanks for being one of them. xxx
Hi again 
Thank you, such nice positive news to hear that your surgery was almost pain free! I'm finding being on here helps because people like you are so open and friendly.
Yes I'm in that horrible waiting bit, I have a 16mm grade 2 IDC ER+ PR- HER2-, which they said was very small.
When I met with the breast surgeon they said I needed an MRI before they decide what sort of surgery I'll need and what sort of treatment. So they were non committal quite rightly as they don't know if there's any spread.
I am just guessing that if there's just the one maybe I can get away with a lumpectomy, radio and hormone therapy but if there's any spread maybe they will have to do something different.
I had the blood tests yesterday, the MRI is Friday and the pre-op is next week.
I think the MDT meets once a week on Wednesdays and the nurse told me the surgeon operates every 2 weeks so there's a waiting list. I think I heard that right. I go in there looking very shell-shocked and don't say/hear much.
I wasn't really expecting some more waiting and yesterday was difficult.
I had a silly worry that the three biopsies may cause the cancer to spread so in a way I'd like it out sooner rather than later.
The MacMillan nurses on here have been really helpful and reassuring, they sent me a link to prehabilitation which is focussing on diet/physical fitness/mental health before treatment starts so that will give me something to do. I hadn't heard that term before and I started eating badly and not walking when this all started (02 June mammogram, 06 June referral for tests. Feels like longer than that, why I am moaning?!).
Thanks again for making me feel comfortable to say how I feel, take care and hope you get your results soon x
