My onco score took less than 2 weeks to come back. I wasnt told early but I found out yesterday that they had discussed it at their Friday meeting before.
You probably know my advice though… don’t call them early for an update. Because if there is more info they want to explain to you, they wont want to do it over the phone and you might panic like I did haha My surgeon said that sometimes they would rather tell you face to face so that they know you understand and that they can reassure you better
I need to be more @foxgem and take more comfort in the positives. You’re right a clear CT and clear lymph nodes is a huge relief.
Must stop my mind from racing on to Onco Score and Chemo. I don’t know anyone else my age who had a high score for Lobular. But frustratingly my PR is 0 which I know add points.
How are you @foxgem, did you have your extra surgery yet? Hope you’re recovering well if so. Also I saw in another thread you mentioned your concern about the delay on the hormone tablets. I feel the same. It makes no sense for that to be final treatment on highly ER positve tumours. Have it on my list of questions for today. Have you been told your Onco score yet? Yes I have learned not to ask anything by phone. No point until after the MDMs.
Also @butterflywing how are you? Have you had your lumpectomy results yet? As I had 3 unclear margins and a bigger tumour I’ve opted for mastectomy which is next Thursday.
Now I know my CT is clear I must now try to park everything else and prepare myself physically and emotionally for losing a breast on Thursday 
the best way is knowing I’m also losing the cancer 
xx
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I’m still waiting for my results 
was told 6- 8 weeks , I’m 5 weeks post surgery on Monday so anytime soon I guess although not sure if I want to hear them or not. xx
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Hi @anxiouslyawaiting thank you for your message. Great news re CT scan. And no lymph nodes. Thinking about you waiting for onco test score. Something that was also said was if the actual tumour is 50mm or over that is one criteria for chemo too? But as you say lobular usually gives a low score. I don’t have a date for CT scan - very anxious as an area of activity showed around bridge of nose area in middle?! Oncologist thinks it’s inflammation but of course I’ve spiralled! So on with the chemo - I had a weeks delay as neutrophils too low so That also makes me anxious too.
I had a mastectomy and clear margins. Whole tumour was 51mm and actual invasive tumour 37mm and a mix of pleomorphic and classic lobular. I had the choice of a lumpectomy and mammoplasty or mastectomy with the option of reconstructive surgery at a later date. I went for mastectomy and this proved the correct decision as whole tumour inc PLCIS made it 51mm and she wouldn’t have had clear margins with lumpectomy she didn’t think. I am getting on fine with prosthetic and being flat doesn’t bother me at all - I had surgery on 13th Nov. I just feel with lobular any local reoccurrence - god forbid- would be easier to spot like Dr Liz O’Riordon’s on her scar. But I’m post menopausal and just can’t face any more Worry with the reconstruction etc. I may change my mind when it comes to it too. Sxx
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My onco score came back 32 which is much higher than I wanted. My poor surgeon wasnt happy either, although he wanted me to have chemo he knows the strain it can have. But he says it’s still positive. The score itself doesnt necessarily mean the cancer was the worst it could be, it just means it is easily defeated with chemo. A high score equals a higher chance the chemo will stop reoccurrance.
I won’t know all the details and the real plan for a couple of weeks so I’m not giving it much thought. Easier and kinder to get through one step at a time. Next on my list is healing, getting my immune system as fit as I possibly can and getting the results of my latest margin.
One step at a time 
much more managable that way. Shame its taken me so long to learn that haha
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Hi
I’m new here . I am a few weeks behind you , I had my diagnosis on 14th Jan , operation a few days ago and a results app for 27th . Maybe that will change ? The waiting and worrying is awful isn’t it . I’m trying to cope by concentrating on what I know rather than what may be but it’s not easy . I hope you get your results soon and they are good x
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Hi , nice to meet you .
I think results time varies depending where you are being treated so I really do hope you get yours on the 27th . The waiting is definitely the worst bit .
Hope your doing ok xx
I’m ok - still in shock I think . Recall from routine mammogram and all been so fast since then . so far things have been very efficient .
My surgeon is very upbeat but until I get that ‘clear margin’ ‘ no nodes ‘ result I will be in panic mode .
Mine was 9mm IDC grade 1 after biopsy . It was ER + 8/8 and HER2 negative which they say is good news. Unless things change it will be 5 sessions of RT and then Letrazole.
He only took one sentinel node out and said it looked normal but I don’t think they know until pathology report .
We need to try to be strong but I like to know everything so it’s not an easy time !
Did you take your own dressings off ?
Yes I did . By day 11 the dressings were beginning to lift by themselves so I just sat watching TV one night and slowly took off the waterproof dressing but left the steristrips . A day later they were peeling so I gently pulled them off as well .
I have no idea how many nodes I had removed, I didn’t speak to my surgeon afterwards so am in the dark as to how big the lump was what the nodes looked like. They looked OK on US so am keeping fingers crossed and praying for clear margins & nodes 
.
Where in the country are you ? x
I’m in Sheffield . We live pretty close to the hospitals so that at least is a good thing !
Your just up the road ! 
This isn’t a roller coaster I ever wanted to find myself on but I’m glad I have ladies like you to talk to .
My lump measured 13mm on mammogram 15 on ultrasound & consultant estimated 20mm so keeping fingers crossed it stays at those measurements post surgery xx
Where are you based ?
It really is a rollercoaster and I’m obsessed with researching stuff ! I asked my surgeon so many questions but he was great with me and answered everything . It’s the only way I can cope .
My biggest fear ( there are many fears ) was chemo but he said it’s not on the cards due to my age ( 66) hormone receptor status and grade . For now I just have to believe that .
It’s so nice to have someone to ‘chat’ to
I hope you get your results soon - my post appointment date was set before surgery but I know things can change x
Im in Derby so literally just down the road 
My biggest fear is chemo . I’m 60 and was told radiation , hormone therapy but there could be a chance of chemo.( am praying I don’t need it )
I like to research to but Google has been my enemy and I end up scaring myself and making my anxiety greater so I’ve stopped .
I went numb when I spike to my surgeon so stupidly didn’t ask any questions 
.xx
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Oh @foxgem so sorry it was 32. I find 
Onco Scores so confusing. Even the breast care nurses say they are often thrown by the unexpected results.. both high & low. Doesn’t seem to be any way of telling. Do you know if your cancer is Ductual (in ducts) or Lobular (in lobes) mine is lobular and results due in next week sometime.
But for now am going to just prioritise my surgery on Thrs. My surgeon and the BCN team at Worthing are so lovely and I had a really good long meeting with them yesterday. I had decided to “go flat” but he gently guided me to reconstruction (first stage same day as Op with the expander) slightly longer Op but I feel better. Not so sad now I won’t actually lose my breast. And as my lymph nodes were clear after my Lumpectomy no underarm incisions this time. Will have a drain though which is a first for me. Hubby already nick named it “Drain Judy” after Dame Judy Dench!
Welcome @sweetpea1 and we’ll all be here for you. This forum is wonderful. And I really hope you get your results soon @butterflywing xx
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Thanks @anxiouslyawaiting it does seem like an awfully long time to be waiting for results.
Do you know if every lump gets sent.off for oncotype testing ? I’m wondering if mine will or not assuming it hasn’t already x
Yes one step at a time, get organised for surgery and then prioritise recovery
I love that you’ve named your drain already that’s brilliant!
I actually don’t know if my cancer is ductal or lobular. The last time I asked my doctor if I needed more info about my cancer he just said he would tell me if I needed to know. So I’m leaving all the finer details to them. They have their job and I’ve got mine haha
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@butterflywing from my understanding it’s the cancers they’re unsure if Chemo will benefit or not. And that are ER positive HER2 Negative or Low. Mine has those receptors but my PR is Negative too which can raise the score a bit. I’m hoping not too much My hospital doesn’t send for an Onco Score before giving the post-lumpectomy results but I guess they might all be different. How long have you waited now? I waited 4 weeks for my official appointment. But I was so upset when I called after 3 wks the BCN gave me a headsup and told me my Lymph Nodes were clear but my margins weren’t. (I now know that’s very common with Lobular as it’s thin & strandy hard to see even on my MRI) Anyway might be worth you calling. It really helped me as gave me a wk to prepare for the appointment and think about my choices on next surgery. The BCN was lovely, they all are. So might be worth you just call and see. I hope you hear soon xx
Most probably it isn’t Lobular then as they seem to make a point of always telling you that as it’s “sneaky” !!
Yes ‘Drain Judy’ is coming to see Wuthering Heights with us on day!! X
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Thanks for replying . I’m Er+ Pr - HER - IDC so looks like mine could be oncotyped then .
I called the BCN when I was almost 4 weeks post surgery and was told they expected the results back between 6-8 weeks so sometime in the next 3 weeks I would think .
It just seems an endless wait , still one step and one worry at a time 
xx
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@butterflywing it’s rare for me to find another PR 0 bud! 
But that does seem exceptionally long and my heart goes out to you as this constant waiting for results is by far the hardest part. The anxiety never really leaves except when you sleep 
I don’t think I’ve had one respite from it since mid Nov
The 10 day biopsy wait until Diagnosis
immediately followed by the 10 day MRI results wait (clear) a brief respite till late Dec surgery. Then the hardest longest 4 week wait for surgery results (Lymph Nodes clear, Margins not) which led straight into the 10 day wait for CT results (scariest wait but was clear) Now I’m on the countdown wait to the Onco Score result wait (my surgeon said he’ll give me the headsup on it Monday at my post surgery appointment)
But somehow I’m parking this last result anxiety and only thinking of (prep for and then healing from) my surgery. I know it’s a cliche but keeping busy (esp having my blissfully unaware grandchildren here!) is the best thing. Sometimes I really don’t want to accept invitations to things as just don’t feel very ‘present’ but it always helps somehow. Sorry for the ramble! Really hope you hear back this week x
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