Hi all, so my 3rd surgery results are due in a week. My mind is obsessing over this. Surgery one was WLE for IDC, and SLND. Surgery two was cavity shave and ALND. Third surgery was to remove another area of dcis and lcis and to get clear margin around a second IDC that they’d removed in surgery 2. Two nodes involved.
Either way my results are going to bad. If it’s still not all out, i need a masectomy. If it’s all out then I will be on to chemo.
My question is…my surgeon say when she is done with surgery, i will be referred to oncology where I will start tamoxifen, chemo, radio. But at my results will I be given that appointment or will I have to wait again? Will MDT meeting have included the oncologist? I can’t make any plans as I don’t know the course of treatment. My boss doesn’t know if she can give me a class for September. My tumour is/was Er+8/8 pr+6/8 her2-. Its been 6 months since diagnosis and I just want to get on with it now. Thanks all. X
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Hi Bluesatsuma
I had to reply as I feel for you so much with this waiting game. I don’t know the answer as all hospitals are different but I just wanted to say even if you need chemo, or mastectomy, I imagine you’ll feel better just for knowing which. At the MDT in Southampton, they always had an oncologist there. For me, there was a debate about chemo or a clearance after my first op. Once that dilemma was resolved, which took a good while, chemo happened relatively quickly. For me, the delays were with diagnosis and surgery.
Sending love
xxxx
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There will be a medical oncologist at the MDT. After they’d met for this , I was referred to clinical oncologist for radiotherapy . He prescribed the Anastrazole .
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Hello lovely
You’re all over the place because everything takes time but be assured that at any MDT there are lots of voices and they know you want answers and a plan and they eant to share that as soon as they can
Everyone does
I suspect you’ll get your results from your surgeon/ their team and then hear about an appointment with oncology…so yes more waiting but hold tight its coming so spend time now doing some lovely stuff and with family and friends and try not to think ahead too much, one day or hour at a time and every day do 1 thing for you
Hugs x
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Hello @bluesatsuma,
I’m so sorry you are feeling this way, there are still so many variables and it is torturous not knowing exactly what is in store. Made harder with the pressure from work and your role next year.
When I had my results a couple of weeks ago, I was told what treatment I’d be having going forward, and that I was being referred to oncology, they gave me the name of the oncologist and the hospital. They suggested it would come through in a couple of weeks. I hadn’t heard anything so I just called the oncologists secretary today to find out if I was on the list and when my appointment would be. Sort of helps with getting your head around timelinrs a bit. Hopefully in a weeks time you’ll feel a bit better once you have more information xx
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Hi @wrenny did you get your appointment? Hope it’s not too long. X
Hi @Curlywurly1. I hope you are right. Just a week to wait now and its a busy one at work, so hope it goes fast. X
@daffodil1 and @klf. Thank you both for your replies. I’m so far into this now. It’s horrid being at the mercy of everyone and having no control. Hopefully they will be discussing me at mdt this week and I’ll soon get answers. Hope you’re both well. X
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Hi, I have thought quite a bit before posting a reply - I don’t come here very often these days, as my diagnosis/surgery (lumpectomy, 11 lymph nodes removed) was in 2018, but sometimes I look in . . . .
I am old as far as I am concerned ( 63 at time of finding a lump), and I am guessing you are nowhere near as old as me, but I wanted to say that I decided to take a lot of control over what I would and wouldn’t have? I have great respect for the consultant/surgeon, specialist nurses who looked after me - but they also had respect for what I would and wouldn’t want to happen in my treatments? I hope you can find some balance with your future, as clinicians can often approach things purely from their stats/expertise/experiences - but we live these lives, and I would only say please go with what sits right with you, and don’t let fear push you into directions you may not want to go?
I hope no-one is offended or feels that my views are unhelpful or outrageous - but what our heads can cope with is as important as our physical bodies. I wish you well bluesatsuma x
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Yes it’s in a couple of weeks, so from the surgery results to the first oncology appointment it’s 4 weeks. Hopefully it will be the same for you!
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Hi @bluesatsuma
I had my third surgery the day after you. Yesterday out of the blue I received a call asking me to go in today.
Thankfully, it was good news for me and they have successfully gained clear margins. My tumour/area was 71mm plus the margins.
I was told I will receive an appointment to see the Oncologist through the post.
Hopefully it will be sooner rather than later as, like you, I was diagnosed in December.
I really hope you receive good news soon too.
Sending you lots of love xx
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Thank you @Paulus. I totally agree. I think that the doctors will listen and take my views on board. And i will stand my ground. To be honest, i just can’t stand the uncertainty and waiting. My kids are have important years at school approaching - gcses and first year of senior school. I want to be fully there for them and not still wondering what the plan is. Thanks for your reply. I hope you are doing well. X
Hi @tracy1 . That’s great news! Fingers crossed for the same. I hope you don’t wait too long. Did the surgeon say what the oncologist will do for you next? X
Hi @bluesatsuma
He didn’t and I was too much in shock to ask any questions. He said I was discussed on Thursday in the MDT, so I am hoping my appointment is in the post already.
I really hope you hear something over the next week.
Sending hugs to you 
xx
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Your oncologist will have been in the MDT from the start. When I was signed off by surgeon, I immediately saw oncologist. If I were you, go and get vaccines NOW!!! The surgeons are rubbish at telling you to do it. They need to be in you for 4 weeks before chemo. Specifically the one to prevent pneumonia. I only had 2 weeks to let mine work annoyingly because chemo started so fast.
They won’t give you Tamoxifen until after chemo.
Mines going surgery, chemo (nearly finished) then radio, then Tamoxifen combined with ovarian suppression or ovary removal.
Based on what you’ve said, it’s likely you’ve got 6 cycles of EC and Docetaxel/Paclitaxel, 3 weekly normally. You can do 2 weekly but that comes with its own risks to heart and also managing to bounce back between cycles. So 15 weeks of chemo + 2-3 week recovery at least. That will take you past September. The end bit is the hardest bit. It’s cumulative and it gets harder to bounce back and the Taxanes are quite challenging (less nausea but more toxic to the body’s immunity/liver). Paclitaxel seems be less toxic and better tolerated but Docetaxel is very effective (if you don’t tolerate it they move you to Paclitaxel anyway!). No significant difference in efficacy but I believe Docetaxel is cheaper too.
I’m not sure you can firmly commit to Sept yet until you know more and see how Chemo goes for you. They can find a sub on a contract for the Xmas term in the hope you’re back for Jan.
Just do what’s right for you. You’ve had a particularly hard journey with a frankly insane amount of surgeries.
Ask at your appointment to book in a PICC or Port appointment asap. Some hospitals seem to be crap and give some by veins. You have had lymph nodes taken so only have one arm of veins left. If they collapse them using cannulation/extravassation, you will suffer more than you need to.
I’ve learnt that advocating for yourself is critical in this game. Don’t be afraid to push and demand and be in control. Go armed with questions about vaccines/ports/PICCs/next appointments/radiotherapy/endocrine therapy/hormone therapy etc.
Xxx
That’s all very helpful thank you @swk1981. I’m still expecting them to say i need a masectomy next. I will though book vaccinations straight away if I finally get passed to oncology. I’ve asked to go to my local hospital for chemo as it’s in the same trust and just 5 minutes from my house. I’ve also asked to go on optima trial too which I realise may add a bit of a delay while they test tumour. That is really good advice about the picc line or port. I hadnt even thought about that! Thank you! X
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Hi @bluesatsuma I just wanted to wish you luck with your results. Is your appointment tomorrow? I really hope it is third time lucky for you too 
Sending you lots of love and positivity 
xx
Thank you @tracy1. Annoyingly, they cancelled my appointment and its now on July 1st. The pathology report isnt ready. Im really gutted as I was all geared up. I rang bcn and told her i was so anxious about it and probable cheme. She asked why i thought I’d need chemo as she didn’t know my case. I said about lymph nodes and my age and she said it wiuld definitely be discussed. I reckon I’m going to need masectomy nect though. How are you doing? X
I’m so sorry @bluesatsuma 
that happened to me after my second surgery. I was so anxious, it made me feel ill. They may get clear margins like mine, I was told that they wouldn’t operate a third time unless they felt they could achieve a successful outcome. Mine ended up being 71mm. Saying that, I had prepared myself for them saying I needed a mastectomy, so much so that I cried when they said they had got it all, first time I had cried since diagnosis. I know how you are feeling as I was exactly the same, it is torture, bless you.
I’m doing ok thank you, I see the oncologist on 1st July.
Sending love and hugs to you xx