Well it’s me again and I’m finally almost there after a 6 week wait for my lumpectomy and slnb results. It’s Monday for my appointment. I’m desperate to know what the results are and what’s happening next. Those of you who’ve had results recently am I right to expect the following:
- Actual size
- Stage
- Lymph node result
- Vascular involvement result
- Next steps
Am I being too optimistic that I will get oncotype dx result and date for radiotherapy planning? I don’t think I can bear anymore waiting. What happened at your results appointments and did they check your scars please?
I also have had high bilirubin levels in recent blood tests. Should I ask about this too?
Hope you’re all doing well.
Thanks
Hi Bluesatuma
At my first appointment after 4 weeks I got told the size, clear margins but unfortunately for me in the two nodes so given another appointment for axillary clearance 2weeks later. I was given a stage this week when I asked the oncologist as everyone else just kept saying early. I didn’t get asked about onco test until after the 2nd lot of results and whether I would have chemo if they came back that I would benefit, I don’t think they would have sent sample off if I’d have said no. I’m 14 weeks now since my 2nd surgery and as you know due to start radio this week on my birthday.
As you’ve waited longer maybe your trust has done everything at once, not much longer to wait now.
I would ask and mention everything you want too know, I’m not very brave when it comes to that.
Sending hugs
J xx
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I was told the size of both my tumours, the area of clear margins ( 5mm ) the grade of my cancer ( grade 2 ) but I was not told the stage , I also kept being told it was early but I felt they were reluctant to tell me the stage ( I will ask my own GP if they have a copy of my pathology results as I would like a copy ) The surgeon then said he would pass me over to oncology for radiotherapy . I heard from them this week with my initial consultation on the 13th March . Good luck with your results .
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@chillout365 thank you. 14 weeks! That’s so long. I reckon I will not get much info but I will ask. I bet it drives the doctors mad that we’ve all been on the internet researching.
Good luck with the rads next week. X
@llanwinno123 thank you. I’m hoping that I find out more and that the plan gets moving. Hope all is going well with you and your treatment x
Hi @bluesatsuma ,
I got results on Monday past(26 February)
I got grade, size, stage and lymph node involvement and also had wound checked. At the appointment. I was also told at the appointment mine was sent for onco score and would hear in 2-3 weeks from Oncology. I got a phone on Friday 1st to go see oncology this Monday regarding treatment plan.
I’m now confused as I was told it would be 2-3 weeks for onco score and this is only 1 week.
I’m thinking maybe sample was sent a few weeks ago after Initial surgery, so maybe you will get all these results at your appointment as you’ve been waiting longer.
Praying for great results for you. I find these waiting stages are very difficult.
Hopefully come Monday we’ll both have our plans. Take care and will be thinking of you xxxx
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I think it completely depends on which health authority you are with and who you see. My surgery results took 5 weeks. The surgeon looked at my wounds after I said I felt rather swollen under my armpit (he was happy with his work) and I was then told the grade of each tumour, that I had clear margins, no lymph node involvement and that I would be moving onto Oncology next (different hospital and NHS Trust) who would sort out hormone therapy and radiotherapy. I was told to expect a phone call from them to sort out my first appointment.
My health authority use the NP Index and my tumours were hormone positive, HER2 negative, grade 2 with the largest being 14mm. My NPI result didn’t warrant an Oncotype test. I found out my NP score via oncology as I didn’t think to ask on the day. I still don’t know the stage but I haven’t asked for it.
I had my first pre-planning meeting with oncology the following week after they called me with a last minute appointment. There I met a lovely radiologist who went through my results in detail, gave me far more information, answered all of my questions, gave me the initial plan for radiotherapy, talked me through hormone treatments and gave me my prescription for Tamoxifen. 2 weeks later I received my planning appointment at the actual cancer hospital (for this Tuesday) where I will have a CT scan and they will decide the number of treatments (they want to give a boost to each tumour site due to my relatively young age but they are currently not sure whether it will be possible due to the clips(?)). I gather radiotherapy is likely to commence 1-2 weeks later as their panel will need to discuss and agree the plan.
I hope it all goes well for you x
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@pollyanna1 oh I do hope you get treatment plan tomorrow too. I’m so sick of waiting that I don’t care what they tell me know as long as they tell me a plan! I had wondered too if theyve already done onco dx as its been so long. I suppose it is possible and ot would explain the mega wait! Maybe yours were sent before you got results on feb 26th too. Thank you for your reply…it is always good to know I’m not alone and your post answered all my questions.
May I ask if you are back at work yet (if you worth that is)? I’m pondering returning after tomorrow as I know that it will be a wait for radiotherapy. I am going to ask dr to do me a note to say amended duties I think.
Thank you and good luck tomorrow 
Hi @bluelagoon. That all sounds like things are moving in the right direction. I am pleased you are getting timely treatments and a plan is coming together. I guess I will have some more info and maybe a plan tomorrow. I’m nervous but keen to get the info as I feel I’ve been in limbo land for too long. Good luck with the radiotherapy and tamoxifen. I’m expecting to start both of these shortly too. X
Hi @bluesatsuma
I’m thinking it was sent before my results, I can’t think any other reason why I’ve to go tomorrow. I know I’ve to get radiotherapy but you’d think they’d wait until ONCO was back. Last Monday’s appointment was with surgeon, tomorrow s is with Oncology. It’s like guessing game at the minute. Hoping all your results are back tomorrow and that’s why you’ve been waiting so long. It’ll be great to get a plan either way.
Regarding work I gave up work 2 years ago@ 50 after 34 years working due to a totally different medical issue. I was fortunate that my last child had just finished UNI. Don’t know how I would have dealt with this 10 years ago when all 3 of them were in education and living at home.
It must be tough trying to work round this especially as the uncertainty of appointments/ treatment etc. I’ve 2 grandchildren 2&3 which I help with childcare and now I won’t be able to do until I get through this journey. I’m ranting on again lol. Like you just so much going through our heads until a plan is in place. I really wish you well tomorrow and pray you get the best results. Will be thinking about you xxxx
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Just wanted to say fingers crossed you get the results and answers you have been so patiently waiting for
Will thinking of you tomorrow
Sending virtual hugs your way
J xx
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Just a quick message to all going for results tomorrow . I will be thinking of you, sending you lots of warm hugs x
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Thank you @chillout365 and @llanwinno123. I’m so glad it’s tomorrow. Just hope I get a way forward and not news of more waiting. Hope you’re both doing well xxx
Just wanted to tell you I started my letrozole and bone tablets yesterday. Don’t know how long se take to start but I have all the symptoms anyway so I’m hoping I don’t notice any difference.
Hope your doing well
J xx
I hope they work out for you @chillout365 . I will start letrozole once my radiotherapy has finished . I have said no to the bone tablets but agreed to review my decision in a few months after a scan .
Hope the letrozole goes well with no bad side effects @chillout365 and @llanwinno123. X