Hi Girls
I need to vent some frustration… and relief…
I had a mast 16 days ago, and was given an appt before leaving the hospital for tomorrow. The reason given at the time was that they had been caught out recently when results were in late, so they wanted to be certain they would be in… hence waiting 2.5 weeks.
However, I had a call about one hour ago (6:30pm) to say that they are still not back! I am not the only person to be disappointed though.
I have been chasing my bcn, and was beginning to be very shakey because I had left a message for her on Friday at 5-to-5 asking if she had heard anything - and had no call back today. I was thinking, ‘She would have called me if there was something positive, and has deferred it until she sees me tomorrow’.
So where am I now? Relieved in some respects that the reason she hasnt called me today was that she simply had no news. however, the message on my answer phone was that if she had some information she would let me know, but she couldnt give me anything definite until the next multi-discipline meeting next Tuesday! A whole week away - a week or worrying, or a week of blissful ignorance. Mmmmmm, it will probably swing from day to day.
Has anyone else had to wait this long after lumpectomy or mast for path reports? I have private insurance, but the I seemed to just get snowballed into the NHS route. Maybe now I know why!
Lisa
Hi Lisa
After my core biopsy and FNA, I had to wait 2 weeks for the results then after surgery and sentinel node biopsy, I had to wait another 2 weeks.This is after I was told that one node was swollen but was probably nothing to worry about. I really sympathise with how you are feeling. It is really unacceptable that we have to wait this long. Some women on this forum seem to get their results in a few days, some are rung at home and some also seem to have a hot line to their oncs. Mine signed me off saying he didn’t need to see me any more and the BC nurse always says she is there if I need help but, it took her a year to offer me counselling after I had already had it from another McMillan nurse this is after repeated phone calls to her saying that I felt so depressed I couldn’t go on. Also, if I have a problem, there is no follow up and I always have to ring and nag for blood test results etc. After a recent mammogram, I had a follow up app 2 weeks later and the consultant seemed surprised when I said I hadn’t had any results. He said that they had written to me and my doctor. The doctor didn’t have any results either. I received mine another 2 weeks later. Sometimes I think the whole system is a shambles and the stress they put on you is worse than having the disease.
Hope everything goes well for you Lisa
Love
Debbie
x
Well, I had mast 1st May, was discharged on 6th and had first set of results on time on the 13th. Luckily for me, it was really good news -no spread to lymph nodes and only small area of cancerous tisue BUT because the area of pre cancer and “changed cells” was so big they wanted to go back and re examine it all even more microscopically. That was due 21st but wasn’t in…they told me they would check every day but no news yet. I will ring again tomorrow (their multi disclipinary meeting is Wed). It probably doesn’t seem so urgent to them now but feel like I need to know and can’t see the oncologist until they know for sure. I wondered if I got bumped back as am now lower priority(?) which is good in one way.
I was very wobbly before I got the first set of results though -a whole week is an eternity with something like this. Only way I dealt with it was to plan small things to do each day to pass the days. Hopefully will start driving tomorrow…
I hope it’s good news for you when you get it. Try and see friends, get taken out etc to lift you a bit
sara
Hi Girls
Im actually back at work so keeping busy. However, it is always there in the back and front of your mind.
My diagnosis was long also - Pagets. I had discharge from the nipple - biopsy was inconclusive, with no lumps to check. I had 2 mammos before they saw microcalcifications behind the nipple - core biopsy (11 days to results) - that came back inconclusive. Then I had a nipple biopsy - that came back pretty quickly confirming pagets.
So, I have already done a lot of waiting, with no idea of grade etc etc. I had to make a decision for a mast based on 3 inconclusive tests and one confirmed.
having said that, the team were absolute stars when my chest xray showed something up on my left lung. Within 36 hours I had a CT scan and results - the mark nothing to worry about.
I just have to keep waiting!
I had mast/axillary clearance/recon on 1 March and got the path results on 19 March, that was going through BUPA.
It took nearly a month to get mine after my mastectomy and ac. It was private and was told by telephone by my surgeon.
Maybe its just the testing phase that is taking the time. Maybe they are finding it hard to find something, and are rechecking (well, I can hope, cant I) 
Ladies
Could it be that they are doing additional tests that is holding up the results, eg Her2?
A friend of mine who had a mast on the same day as me, in the same ward as me, got her results today - hers were hormone receptive - no mention of her2.
Alarm bells are ringing loudly - what is holding it up? Why are mine back later than someone else who had the same op on the same day in the same ward as me!
Lisa
I did get a call from my bcn this week who has said mine are still being tested. They have done one more set and that although they have still can’t find any more cancer they are also doing a FISH test which will probably take another week as the dcis (I have this and lcis with some invasive cells) seemed to show it was her2 receptive and oestrogen receptive but they now think that the her2 result might be a false positive.This seems to be what’s taking the time -I also think they are a bit confused by me as my dcis was large (115mm which sounds huge to me) and they therefore think there should have been more cancer there than there was. So yes, rechecking to be sure can take ages -it’s better they get it right even if it is a nightmare waiting for it. In the end, my bcn has said she will leave my card out by the computer so she can check every day whether the final ones are back.
Don’t know whether that helps.
I’m not back at work as I commute weekly and am not ready to be away from home mon-fri yet.Also would like to be sure from my oncologist what treatment I have to have
Take care
Hi Sagee
Thanks for your feedback - it helped.
My problem is that I didnt have a lump, just some microcalcifications behind the nipple, and core biopsies were inconclusive, and so was the analysis of the nipple discharge (my only symptom).
The final diagnosis was only from a sample of nipple which showed paget cells.
Therefore, nothing really was known about what was inside. Now 2 months down the line, I am still waiting the full story.
I spoke to my bcn but didnt really get any further information, I just need to sit tight.
lisa