Waiting for results

[Kimucoughdrop]

I am 50 and also hormone positive which I have thought is a good thing as there are hormone treatments to help. I felt so sick before seeing the oncologist today but somehow knowing more of what's going on has helped me feel better. Maybe I am in denial and tomorrow I will be a gibbering wreck again. I am thinking about cleaning cupboards out and getting organised if I am going to feel rotten for 6 months. I am such a googler of everything that's what I must try to stop. X 

[Bookworm48]

PS. Cording still troublesome but a bit better - seeing physio on Thursday so really good to hear it helped your mum.

[Bookworm48]

I too have just received all the paperwork to see if I need to be genetically tested and would need to have that done in London. I lost my Mum to BC and both my grandmothers passed away before the age of 50 though not BC. I too worry for my daughter. Had a call from my oncologist's secretary today and looks like I'll be seeing him some time next week. Dreading it to be honest. I've been sticking my head in the sand a bit this week although reading up on as much as I can. There seems so much conflicting advice. I'm hormone positive - some info seems to suggest this as a drawback but my breast surgeon said it was a good thing as hormone treatment effective (though I know unpleasant). Confused.com. Still, the chemo question is the first big step I guess and that's confusing too. So many posts on here query the effectiveness of chemo preventing a recurrence and that's what in my case it would be trying to achieve. Don't know how old you are Kim but I know they bring age into the equation as well as tumour size, lymph nodes, grade etc. I'm 48. All the best x

[Kimucoughdrop]

I have that long message waiting. They also talked to me about genetics and we're going to send me somewhere to talk about that as my family has such a bad history of breast cancer. I really worry about my daughter because of all this . Glad you gave a supportive hubby too ! They must find it do hard too watching us go through this. How's your cording ? Mum had that but it got sorted with physio. Hope you are feeling ok with your busy week . 

Kim X 

[Bookworm48]

So glad that you're feeling calmer. That's a good sign. Sounds like your hubby is good support. Mine is too and that's a god send isn't it. Have emailed the moderator to see why I still can't access private messaging. Will let you know when I have been authorised! Take care x

[Kimucoughdrop]

I asked the oncologist what he would decide if it was his wife but he wouldn't say, rotter ! He seemed to be vering towards chemo, I am glad I am having the oncotyoe test. I went for a walk with my hubby tonight and he said he is expecting the test to high. He just has a feeling it was a bad one. Another two week wait. Although I do feel calmer not sure why? He said if I was going to have chemo I could be starting in 3 weeks. I am going to try to be super healthy to prepare my body for the onslaught. 

[Bookworm48]

Good that you're having the onco test. I'm not sure I will be eligible as I have a lymph node affected and u think they only do it for lymph free patients . Hopefully the test will help you come to a decision. What was the view of the oncologist? Did he/she strongly advise one way or the other? So hard. Hope you're bearing up. X

[Kimucoughdrop]

Just got back from oncologist and he says at the moment I have a 5% increase in survival if I have chemo, I am now having the oncotype  test to see how that affects the percentage. I am thinking at 5%vi should have chemo 

[Kimucoughdrop]

I wonder how many you need to post before you can do it? I just tried to send it again but didn't work so that's why. I will keep it saved until you can get them. X

[Bookworm48]

I can't enable private messaging until I've posted more apparently!! 

[Bookworm48]

Will make sure I turn the instant message thing on. So sorry, I didn't realise . Hope you can still send the message.

[Kimucoughdrop]

I just written you a long instant message to you but it wouldn't let me send it as I think you need to enable messaging ? X 

[Bookworm48]

Oh Kim. We seem to be on a similar roller coaster. I too have had a bad day today and have spent most of it crying. Yet on another day I can seem to paint on a smile and stick my head in the sand. I really really empathise with you. I know that doesn't really help either of us but I do think its important to cry and not bottle it up in order to move forward. Yes, everyone on here seems so incredibly positive but I bet they will be the first to admit their emotions have been all over the place. One minute I think yes, I must try chemo, the next I'm crying and saying I can't go through with it. I guess this mix of emotions is part of coming to terms with it all? That combined with sore boobs from surgery and dead arm from lymph node clearance has just tipped me over the edge. I keep thinking in early March I didn't have a clue what was going on in my body. Where did you go to see the BC nurse at Macmillan? That sounds a great idea. Don't know whether you can personal message on this site? I would be happy to do that. We seem in a similar state .....when do you see your oncologist or have you already ? Do you have details of chemotheraoy yet? That's the next big one isn't it. I've talked to my daughter (9) about chemotherapy. She was so brave but said she was scared about having a bald mummy and I'm really stressed about that and chemo side effects too. My teenage boys are dealing a bit better. I really hope as each day passes you find more strength Kim. I think we have to be prepared for good and bad days. In the space of a few weeks so much has happened. Hopefully your oncologist will be positive and reassuring. Sending you a big hug. Bookworm xxxx

[Kimucoughdrop]

Hi Bookworm 

hi how are you doing with half term? I went to Macmillan. Today and had a chat with a breast cancer nurse there. I don't know why but today I feel terrible and cannot stop crying and feeling my life is so different and will be cut short. Everyone keeps telling me to be positive but today I just can't and then worrying the stress of feeling like this is affecting the cancer. I found out today it's the worse grade 3 scoring 9 which has thrown me into a spin. I am thinking who will come to my funeral then panicking that because I am thinking this its a premonition. I am so sorry to feel so bad because on here people seem so positive and fine. I want to run away but can't . 

Kim x 

[Bookworm48]

PS. Im seeing onc week after next (need to have a breather next week - half term and have 4 kids) so we seem quite closely in our 'journey'. Need physio for cording following lymph clearance. Like you will discuss percentages with onc and then chemotheraoy I guess. They also wonder whether I should go for genetic screening. A lot to deal with. As you say, we are not alone. Had my hair cut today and the stylist had even been through it and had just had her reconstruction. Weird what you can talk about even in a hair salon!!! X

[Bookworm48]

Hi again Kim. That's spooky. Victoria Derbyshire lives close by to me - we had our ops at the same hospital and when I saw her blogs I contacted her via Facebook. She has even recommended me her wig lady!! Have found her very inspiring. I'm so pleased that the surgeon was pleased with you today. That good news. That's the first important milestone. I'm very very anxious about chemotherapy but I guess we have to listen to the oncologist and keep an open mind? My surgeon said treat it like an insurance policy. Hard isn't it? Big hug winging its way to you. Xx

[Kimucoughdrop]

Hi Bookworm that's such good news about your margins, so no more surgery! I can totally understand waiting room nerves you just sit there feeling so sick inside. The breast surgeon was pleased with my surgery, I went with loads of questions but he said the oncologist is the person to,talk to now about everything. I see him next week to talk percentages and chemo. If it was grade 2 they wouldn't be talking about chemo. I watched some clips of Victoria Derbyshire going through her treatment including chemo ones and it was helpful if you can google them have a look. We are so not alone in this journey so many go through it. What's your plan of action now ? Kim xxx

[Bookworm48]

Hi Kim. I totally can relate to how you are feeling. I'm finding it all so hard too. As you say, I too feel very different to my old self. In March I felt fine and now my life is in bits. I guess it's a form of shock isn't It. I really hope you get on ok with the breast surgeon today. Good luck. I went for my appointment yesterday and it was good news. They got clear margins this time. However by the time I'd waited for my appointment id worked myself up into such a state that I lost in big time in the waiting room. Like you, my Mum also had this awful disease and I sadly lost her to it 8 years ago. The chemo was a living misery for her and now I'm faced with it. I just want to run away! Keep strong Kim. It's so hard isn't it. Let me know how today goes. It's great that you've got no lymph involvement so focus on the good news. Bookworm xxx

[Kimucoughdrop]

Hi Bookworm my results were increase from grade 2 to 3 no lymph nodes and clear margins, going to see breast surgeon tomorrow to discuss all this and then oncologist next week. It's so,weird I want to the shops for the first time since surgery and felt like I was different from all the other shoppers because I had cancer. Wonder if I will ever feel normal again? I was lying in bed last night with a pain in my hip and thought it's there . A month ago I was just getting on with my life now it's turned upside down. Cleaning the house seems to be a therapy which I throw myself into but then every now and then I get a wave of horror at what's happening. My mum had breast cancer 11years ago and had to go back for a re-excision and she has been fine. Good luck with your results let me know . Kim xxx

[Bookworm48]

hi Kimucoughdrop. It's a nightmare isn't it. How did you get on? I hope it went ok for you? I've got the washing machine tummy today. Went back last week and they didn't have clear margins from the surgery so I had to have a re- excision which has really set me back. Now wsiting for the results of that and worried sick.

[Kimucoughdrop]

Hi Bookworm how did you get on with your results ? I get mine today and my stomach is going round like a washing machine. I have hardly slept since getting my diagnosis and last night I just lay there thinking all sorts of everything. 

[Bookworm48]

Also, maybe this post is more suitable on a chemo thread but I am getting my knickers in an absolute twist about lymph mode involvement ( I know at least one is affected from biopsy but may be more) and the prospect of chemo. Any friends and family have had miserable chemo stories. Waiting for biopsy result on other breast too as calcification spotted on mammogram.

[Bookworm48]

Hi. First time ever of posting. Nervous just doing this!! Diagnosed two days after my Dad's funeral on 19 April. 4 cm tumour. Lymph node involvement. Hormone positive. Had a lumpectomy and full node clearance 2 weeks ago and getting my results tomorrow. I lost my Mum to this and am petrified. Have 4 children. Am in my 40s. Fell sick with worry at prospect of chemo. Any support/advice hugely appreciated. I have Bupa cover so at least have been treated quickly. Also have been prescribed diazepam by GP as struggling to sleep. Any comments gratefully received xxxx

[Butterfly318]

Dear Dolina

I think Helly is right, ask your GP.  I think it is reasonable to ask for sleeping tablets.  You are not dealing with general life events here.  You have had to come to terms with your diagnosis and treatment and need some support.  Longer term i use good sleep hygiene, walking and exercising.  I still struggle to stay asleep.

Take Care  Butterfly x 

[helly18]

Dolina,  I would go and discuss  it with your gp. Mine gave me 7 days  of diazepam  to start with and had no problem extending the prescription  as she said this was to help in the short term and that  we could review options if required after that.

[Dolina]

Thank you for your story, it really helps. Dolina x

[Dolina]

Morning Ladies, I just wanted some advice really, I have not been sleeping well, I can drop off to sleep but waken up a few hours later and then spend a lot of the remaining hours worrying, I went to my gp about a month ago in between surgeries and asked for sleeping pills, he gave me 14, and those took me to the next surgery brilliantly but I have only 3 left and still have 3 weeks to wait, the question finally is will the GPs give me more sleeping tablets or am I just being melodramatic about wanting them or is it a reasonable request? Thank you

[helly18]

Ladies I agree the waiting is bloomin awful and I had many up and down days , the down moments just seemed  to sneak up and grab you out if the blue! I left hospital  with  the date for results 2 weeks later and then got a phone call the day before to say they weren't ready so that extended it to 3 weeks.  It was just as well my gp had given me some diazepam by that point!  

[Butterfly318]

Dear Dolina

I had exactly the same surgery x 3.  Intially i had what looked like a 6.5cm tumour, large breasted so suggested plan was Chemo first to shrink tumour then Quadrantectomy.... Removed about 1/3rd of my breast and reconstructed the remainder.  Gorgeous pert c/d cup...... 2 weeks later no clear margins,  further slice taken which revealed a 5mm area of concern  (some peoples tumours aren't this big.)  So rather than a further slice i asked for mastectomy.  Had radiotherapy after that and now 3.1/2 years on from diagnosis.

My pathology report showed a 4.2cm tumour with minimal response to Chemo, FecT 100 didn't do much for it at all.

I agreed to this pathway as survival rates are very similar in mastectomy and lumpectomy and this works for many people, it just didn't for me. 

The waiting is painful.  I did speak to my Oncologist about why this is,  he advised there are several processes in the Lab, grading, type etc double checking of everything, collating it with blood results aappears to give them a lot of info then MDT before Surgeon or Oncologist can have a further consultation with us. 

I saw my surgeon last week for annual check up.  After 3.1/2 years she now knows me well.

Hope that you get a good result at your next appointment and the rest of your treatment goes well.

Take Care   Butterfly x

[On a diversion]

Oh yeah I'm feeling exactly the same xx

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@Dolina wrote:

Hi, I am also waiting for results, this to me is the worst thing, I have had a lumpectomy and node removal, waited three weeks got the results, no clear margin, back in surgery again, waited three weeks no clear margin, had surgery again last week and have to wait four weeks for these results due to surgeon going on holiday etc.  I really feel great most of the time but a shiver of terror escapes every now and then and the tears start. Anyone else like this?

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[On a diversion]

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@LMB212 wrote:
For me waiting for the results is the worst bit. It is cruel. Having been through it twice initally following the core biospy then with the lumpectomy results and I now find myself waiting again for the mastectomy and node clearance results. Back on the Roller coaster ride. Lou x

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Yes I agree it does feel cruel, I hope you get your results soon X

[On a diversion]

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@Cara0165 wrote:
I am and it's torture, I have my appointment next Friday and just wishing I could jump ahead the whole week! Have you had an appointment through yet?

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No, still waiting! 

[Jobey68]

Bless you Ruby, ive been through all sorts of emotions since getting my letter last week, was tempted to postpone but hubby said no point in burying your head, like you im sure im fine and now im 100% certain about going monday i feel ok, i assume im seeing my surgeon as hes on my letter but may just be a mammo, its got to be done and as ive seen no one since i finished rads last June will be nice to have a chat at least Xx

[rubycat]

Glad to make you smile Anita

Like you Jobey, I'm having my first year mammo on Weds and getting my knickers in a right twist.  I'm not seeing the surgeon though, only having the mammo.  Just going to do another post about my seroma & ask for some help.  Yes, a year on and I feel back to the panicky feelings and not sleeping, although basically I do know that I'm fine.  Here's hoping for good news for us all.

[Jobey68]

I saw my oncologist a few weeks after my results to discuss my treatment plan, the only time I've ever seen her, my appointment on Monday is with my surgeon too, will be glad to get this one under my belt! Xx 

[Anita]

Thank you so much for your replies it really has put my mind at rest. Dolina I'm so sorry you've gone through all that so far. And yes I feel o.k about 90% of the time & then something usually stupid will have me in floods of tears. It was the oncologist, Jo that my friend had follow up with, she never saw the surgeon again. All the best for Monday. Anita xx

[Jobey68]

Anita I had my op follow up and results with my surgeon  and as far as I'm aware this is the norm so don't know who gave your friend her results? Everything sends you in to a tail spin so that's totally normal as well, I'm off for first year check up and Mammogram on Monday so will be back in the waiting room with you! Xx Jo 

[Dolina]

Hi, I am also waiting for results, this to me is the worst thing, I have had a lumpectomy and node removal, waited three weeks got the results, no clear margin, back in surgery again, waited three weeks no clear margin, had surgery again last week and have to wait four weeks for these results due to surgeon going on holiday etc.  I really feel great most of the time but a shiver of terror escapes every now and then and the tears start. Anyone else like this?

[Anita]

Oh rubycat thank you so much you've lightened my mood again & made me smile. Anita xx

[rubycat]

Don't think you need to worry Anita - I had follow up after ops with surgeon - it does seem as if all hospitals have their own procedures.  The waiting game is always the hardest, and I do feel for you.  Yes, it does seem as if something will always knock you over the head when you're trying to be positive - sometimes you have to roll with the punches.  Many times I've taken myself off to bed with my pussycat and felt sorry for myself, but it all passes, as will the time to the 18th.  In the time it's taken to read this, you are that much closer!!  Hope you get as good results as you can.

[Anita]

Me OAD I've had follow up appointment after the surgery come today & it's not until April 18th. I'm so frustrated with having to wait so long. And then a friend has worried me as she said she didn't see her surgeon again after her op & my appointment is with my surgeon. Why does all this have to be so frustrating. I'm trying to stay upbeat then things keep knocking me down.

[LMB212]

For me waiting for the results is the worst bit. It is cruel. Having been through it twice initally following the core biospy then with the lumpectomy results and I now find myself waiting again for the mastectomy and node clearance results. Back on the Roller coaster ride. Lou x

[Cara0165]

I am and it's torture, I have my appointment next Friday and just wishing I could jump ahead the whole week! Have you had an appointment through yet?

[On a diversion]

How many of you are waiting for their pathology results? I'm finding this wait harder than the wait for the biopsy results 😞