How's everyone doing.?

[Ang14]

Sorry just seen typos in my post! That's a phone keypad for you:) x

[Ang14]

Hi all

I just want to say that reading all your posts really helps when I'm having moments of panic. I don't post much as I'm trying to get my head around it all.
I'm in surgery again on Monday for a lumpectomy, 2 Sen nodes removal and partial reconstruction.
Reading on these forums it seems thus is usually done in day surgery but I have been told to expect 1 or 2 might stay?!
Your posts really do keep me positive.
Xx

[ladybowler]

rach

Oh that is fab,so that is your next milestone, am I absolutely loving the positivity and the donning of normal pants, you go girl xxxxx

[rach1b70]

Thanks Helena.

I spoke to my BCN yesterday and she informed me that the latest I would receive my results was next Wednesday. Those words were the biggest help to me as I could now plan the next five days. So today I have decided to don my normality pants and have fun until then.

Rachel
💕💕💕xxx

[ladybowler]

Rach

Sorry I have only just noticed that you replied.

All this waiting is hard and it really affects us, we try to keep busy and forget but it is always there in the background but it will soon be 7th feb xx

You are entitled to have down days, we all need to cry to be able to release the built up emotions, and always remember we are here to help and support, you can rant and cry on here in complete safety and we will get you through it

It is great to see that today you are feeling so much better, yep and you will get through whatever it is because even though you don't think it you are strong and you will be the other side of this in the not too distant future. 

As ann said, radiotherapy does involve an initial appointment with the oncologist after which about two weeks later you have a planning appointment and then rads will start about two weeks after that.

Lots of love and hugs

Helena xxx

[ann-m]

hi Rach,
For rads, the first appointment is the planning one & treatment does start soon after that. They should give you the dates at that appointment.
ann x

[rach1b70]

Hi Helena

I am really struggling. Was due to see the Oncologist Tuesday but the FISH test results were not in. Now due to see him 7th Feb, still waiting for my appointment time.

Spoke to my BCN about treatment start times and she said it would start virtually immediately. I still do not know what treatment, so my mind is working overtime, as I understood RADS involved planning meetings.

Yesterday was horrendous, I cried the whole day, but today I found some inner strength and managed a whole day at work without breaking down.

I am ready to face whatever is thrown at me, but need to know now and hate the waiting.
Much love and hugs 💕

Rachel xxx

[ladybowler]

Rach

How are you doing, have you had you results yet ?

Helena xxx

[ann-m]

hi Nicky,
So sorry to hear what you're going through at the moment, it must be so scary.
Is it worth ringing the helpline here for advice or macmillan? maybe volunteer support could be available to help you whilst you go through this.
Is there another bcn you could speak to for advice & support? There's usually others in the team.
Do come here whenever you need to & do look at the chemo threads if you haven't already.
sending hugs
ann xx

[Nicki roberts]

I have breast cancer. Stage 2 invasive ductal I started chemo last Monday. To say I've been ill is an understatement . This is the first day I've felt a little bit better although still so so weak/ fatigued/ the sickness has been the worst!!! Continuous vomiting at the wk end..called a off duty doctor sat who gave me more sickness tabs..then by Sunday I was in the worst state I think I've ever been in. The sickness was horrendous..called an ambulance I was freezing cold hot sweats servere stomach pain and continuous throwing up. Haven't eaten since last Friday. I had a slice of bread today I have no support. I am home alone. I called my nurse last weds to say I couldn't eat and I was so weak. She started having a go a me. So badly I had to put the phone down where I was so upset at her behaviour. I said I felt I had taken to the chemo badly and this was before what happened to me at the wk end. The hospital at the wk end must have made barts aware I was in at the wk end and yet she hasn't contacted me once this week. I'm to afraid to call her because she starts having a go.
I feel so alone and so sick and weak. I also only lost my mum 4 months ago.
I cared for her for 4 years. I'm still grieving and I'm so hurt.
I wanted my breast removed as I didn't want to go through 4/6 months of chemo. Yet I mentioned it to my oncologist and was shut down. I have spent in total since my diagnosis 25 mins with the doctor who gave me my diagnosis which was 2 x appointments and 1 x appointment with my oncologist. None of anything was explained none of any options where given. So far I'm totally shocked how I've been treated under barts.
I can't have any more chemo and be this sick alone and so IIl. So I want my breast off and I don't want this chemo. My nurse having a go because I haven't been eating...as I said I messed myself twice because I couldn't make the toilet so how can I make food while puking up?? She said not eating was very bad.. she just not listening how ill I have been. She also said that 80 year old women have chemo and have to live alone? I'm wondering if that's true?? Or a ploy to stop me from saying I'm sick and should be greatful or something?? Any advise please. I'm so scared so alone and not coping where I'm so sick. Also my throat feels like it's on fire and my head is so itchie.. I'm so scared what can I do living alone and being so sick with the chemo
Thanks

[Patriciamay]

Hi Ang - not at all, I just want to get my life back as normal as it possibly can be.  After my second op (had one two weeks after to clear margins), I went back to the Gym in 4 days - I figured even if I just lower the intensity I am doing what I usually do - it works for me - my family were a bit alarmed, but like I said, I just didn't over do it.  All the best.  xxx

[Ang14]

Thanks Patriciamay, I know it seems crazy to be thinking about the gym with everything else we are going through, but exercise makes me feel so much better and I can nearly put the BC to the back of my mind:).
xx

[Patriciamay]

Hi Ang, wishing you all the best for Monday, hope it goes smoothly.

 I am a bit of a gym fanatic too, I also cycle everyday,  I asked the hospital when I had my first lumpectomy and she said 2.weeks,  I frowned at that, and said "how about I go back when II feel ready", and she said yes sure that was sensible.  So I went back after one week.  However I laid off any upper body weights for about 4,weeks and just did cardio, and reduced my routine in intensity for about 3 weeks.  I laid off cycling for a week, more cos I was scared about  risks of falling off.  So, obviously it depends on where your excision is and as long as you don't have any infection etc,  of course if your surgeon nurse says anything else then you should obey the rules!

All the very best. Xxx

[Ang14]

Hi

I haven't posted on here for a bit, since my diagnosis on 19th. I've been trying to get my head around it, it seems very surreal.
I'm actually feeling ok about it - I think! It's not being able to plan anything for the next couple of months that I'm finding hard to deal with.
I did have one wobble last week but spoke to a lovely lady on the helpline here and felt lots better.
I'm in for a lumpectomy and sentinel nodes (2 of them) removal on Monday. Can anyone who has had this procedure give me any advice as to how long you are unable to exercise. I'm a gym fanatic and it's one of the only things that is keeping me sane at the moment.
I hope everyone is ok and reading posts really does help a lot xx

[ladybowler]

Isn't it amazing what we find out by just being on here and talking to each other, probably more than we would know elsewhere.  I have never heard of a fish test either, but now I do

Helena xxx

[Alex1967]

Well went for appointment today following the findings on MRI and aswell as my original 25mm lump they have found 3 more but very small (1mm, 2mm and 6mm) therefore not having biopsy as radiologist said same characteristics as main one so mastectomy on Wednesday - lymph nodes still look normal but will obviously be checked out. Hail medical technology that's all I can say! X

[rach1b70]

😂😂😂

its the extra test they do for HER2 if it comes back borderline in the first round

Xx

[Silverlady]

Hi Rach,

What at is a fish test? 

My my mind has some strange imagery at the moment.

[rach1b70]

I have posted this in another thread also, but wondered if anyone else had experienced the same and how did things pan out. My mind is working overtime second guessing treatment at the moment.

Diagnosis so far

8-9mm tumor removed. Grade 1 ER+ HER2 borderline. No node involvement.

Waiting for results of fish test and to see oncologist.

Love and strength to you all 💕💕💕

[ladybowler]

Alex

I am echoing what ann and Susan are saying.  Remember you want ROLF completely out of your body so this is to make sure that happens.

Sending you loads of hugs

Helena xxx

[Silverlady]

Hi Alex,

They do want to get it right before they commence surgery. You don't want to be recovering from one surgery and then have to go for another. When they did my SNB, if they had found node involvement, I would have had to have surgery again, just after having my mx.

This waiting is horrible and I know you just want to get it sorted. Sending you a big hug - you will get there in the end. EM67 was diagnosed back in October and she has only just had her surgery yesterday, it was awful for her as we all had our surgerys while she was still having scans and waiting for results.

Loads of hugs

Susan

P.s. We are all in the coffee lounge under hope and inspiration, come for a chat.

[ann-m]

hi Alex,
I remember feeling the same thing. Its best to get to the bottom of it all, in the first place, so that you get the correct surgery for your diagnosis, even if further investigation is needed.
ann x

[Alex1967]

So....... got my MRI results and nurse said it has shown "another area of suspicion" and they want to do a ultrasound and possible biopsy on it before lumpectomy in case need mastectomy. They said other breast is clear and no comment/report on lymph node involvement which she said is good. Not sure how to feel but suppose they want to get it right first time rather than having me back in for further surgery 🤔

[Jo C]

Hi Alex, I love the name ROLF! It's the anxiety of waiting and uncertainty that gets to us...if we don't know the answer we make it up and make it a hundred times worse than it probably is. When I was waiting for results the nurse said she might be able to ring me after the MDT but the consultant probably wouldn't let her as I was seeing him the next day. She didn't ring, I panicked and was terrified of going to my appointment. I sat shaking like a jelly so much that the consultant came and put his arm round me and was completely reassuring.

Once you know the results and what surgery you will be having you will be able to get some control back and move forwards. It's that whole wanting rid of ROLF and needing confirmation that it will all go ahead as planned.

Big hugs.

Jo xx

[Silverlady]

Hi Alex,

I can't add anything more that Helena & Ann have said. But I just wanted to send you a huge big hug and let you know that we are all thinking about you. ❤️❤️

[ann-m]

Hi Alex,

Yes, that's so right, for us it is unique & horrible, for the team they're dealing with this day in, day out. 

So inevitable the anxiety can lead us to imagine the worst, when often the explanation is quite mundane.

It will resolve.

ann x

[ladybowler]

Alex

And that is the way to think about it, that is your next big milestone.  I called mine Mr Blobby xx

[Alex1967]

Thanks Helena and Ann - it's that old "awaiting results" feeling that once you get them there's another lot not long after. I need to stop trying to read people's faces and voices! You just can't help it sometimes can you - suppose it's just human nature. They've probably got umpteen people to speak to about results and it's just their job but it's awful for us waiting. I just keep thinking this time next week Rolf will be out x

[ann-m]

Hi Alex,

The same thing happened to me. I had an MRI scan 2 days before surgery & was told the results would be rushed through beforehand & that I would be contacted to confirm if the surgery was to go ahead.

Anyway, a call didn't come through, so I carried on as normal with the wire localisation just before surgery, everything went ahead as planned, then the surgeon told me, the MRI was clear, but that he did not ring as he was seeing me that day!

So try not to read too much into it, however, I do remember the feelings you describe, the anxiety is horrible.

I was so relieved everything was going ahead as planned, I almost enjoyed the experience & my bp went down!

ann x

[ladybowler]

Alex

Oohh sending you a big Helena huggle.

This is anxiety that is causing you to feel the way you do and quite normal.  You are expressing your fears which is good as they are better out than in, and you know you are in a safe place here.  Your anxious voice is telling you that there is something they are keeping from you but then, which is great, your rational voice is telling you that actually the results are only reviewed at the MDT which is held on a Friday so actually you would not expect them to make any decisions until then, bear in mind depending on what time they have the meeting and how long it goes on for that is possibly why it might not be until Monday that you find out the results of your MRI.

You are also on your own at the moment and have no distraction from thinking about your diagnosis that you would have if your hubby was there I am sure.  One thing you are not though is on your own, not with us lot behind you xxx

Helena xxx

[Alex1967]

Feeling a bit low today - had my MRI yesterday with the knowledge they would rush results through in time for my planned surgery next Wednesday (currently lumpectomy on 25mm lump) but wanted MRI just in case mx required. Rand BCN today and left a message as not had any appointment for pre-op yet and it's getting closer. She rang me back and said pre-op is on Monday and she didn't have any results in front of her but will phone me Friday and if not will discuss on Monday at the pre-op. Now my mind is thinking she didn't want to tell me over the phone and was putting it off. I know they have MDT meetings on Fridays (I remember them saying that when I had my biopsy) but I'm so scared. I've got pain in my bottom rib under the affected breast (although I've had that for years and only eased when I was pregnant 18 years ago!) but of course I'm linking it to the BC now! It's been such a long time being unofficially diagnosed at USS on 14 Dec as the consultant radiologist knew it was cancer, then having to wait over the Xmas period (delay) for the official diagnosis on 10 Jan. My arm hurts - has hurt for over a year and actually went to A&E with it last year and was told it was repetitive strain - couldn't even lift a jar of coffee then although can now - it just hurts when I reach behind me - feels muscular but again linking it! Husband away and feel so alone. I just need this thing OUT or OFF 😢

[Alex1967]

It was quite funny afterwards because I said to the nurse "do many people panic?" and she said "usually every 3rd one".... I was probably number 3 and they thought "here we go we've got number 3" 😂😂😂

[Alex1967]

Haha Emma the human mind is very funny! The mistake I made too was because I was laid on my front and went in feet first I laid there and i bent my leg and my heel touched the roof instantly and it made me realise how narrow it was and it freaked me out! The radiologist was lovely and he said look you need to have this done, you have BC and we need to have a look. BUT the feeling of KNOWING you need to do this verses your fear of being claustrophobic was awful! Done now though! Currently sat with a glass of rose with feet up! Thank you for all your support xx

[Em 67]

Oh Alex that's exactly what happened to me with the MRI. I so wished I'd said to you to keep your eyes open when you go in when I saw you were worried about having one. It didn't occur to me to open my eyes the first time and did the same as you panicked and screamed at them to let me out! I felt such an idiot. Then realised if I kept my eyes open I could see the end. I did the whole thing with my head sort of stretched round so I could see enough of the outside! I have decided if I have another one I'll take some sort of tranquilliser first! Glad you got through it anyway and hope that things don't change too much as a result. I am also waiting for surge (mines on Friday) and it is a horrible wait.have you got plenty of things planned for this week? I'm trying to fill my days and keep occupied then get completely knackered!! Take care Emma xx

[Alex1967]

Yep well I'm booked in for a WLE next Wednesday so they should know before then in case need to change it to an mx. The only advice i would give us keep your eyes open because when the slid me in with my eyes just I felt I was underground! When they slid me in again I kept them open and could see the tunnel exit which wasn't actually that far from my head!

[ladybowler]

Alex

Well that is that one over, you have got through it, I have never had one myself but Colin has and he told me what it was like, I must admit I think it would freak me out.

Presumably they will let you know in the next week or so?

Relax now xxxx

[Alex1967]

Well I went for my MRI today and it was a bit embarrassing because when they slid me into the scanner I had my eyes shut and this panic suddenly came over me and I shouted "GET ME OUT, GET ME OUT"! 😂😂 They had to slide it back out and sit and reassure me! Managed it in the end! Didn't ask what they saw and they didn't mention anything so just have to wait now to see if I need a WLE or MX

[Alex1967]

Thank you all (yet again my rocks!) - yes it is just a breast MRI they have said. I think it's just felt such a long time since diagnosis over Xmas and I'm off work so you have more time unfortunately for your mind to wander. This time tomorrow the MRI will be done and another thing ticked off - just want the surgery now to be done so I will know the next plan and get myself ready. Xx

[rach1b70]

Hi Alex

Please don't be worried about the MRI. I am blessed with big boobies and this is my surgeons preferred scanning method for me now.

It is the most undignified method too 😂😂😂. Let me talk you through my experience.

I am a petite 5'2" with 34J boobs. My OH thinks he is lucky, I think they are a curse 😂😂

For the MRI

I was asked to get on the bed and place my boobs in the prepared cups. Picture the scene, me in all fours dangling my large boobs while guiding them into the holes on the bed. I am them asked to adjust myself to make sure gravity has really taken over and I am not using them as a cushion !! 😂

I then had a cannula inserted so that dye could be injected into my blood stream at some point during the scan.


The whole process lasted around 40 minutes. The only thing that hurt was my pride and dignity 😜😜 mind you, I am used to child birth !!! It was noisy, but that's it.

Try to relax and listen to Lionel Richie crooning through the headphones. It will be over before you know it.

Take care and keep strong lovely lady💕💕😘😘xx

[Truey]

Hi Alex,

I know just how petrified you feel....I had to have a CT scan with contrast looking for metastasis as I had DCIS with invasive tumour on top. We already knew from the biopsy results that I had some positive nodes so it was a real possibility even though the oncologists were convinced it hadn't spread.

It was a difficult few days but thank fully it came back negative. 

They don't always rush with the results. I called my BCN after a week and she said they would tell me at admission for my mx - another 10 days and I would be on my own in the hospital!! I told her I would go mad by then!! What a star, she checked on the system and rang me back 10 minutes later to say it was clear.....I guess she could not have done that if it was a positive result but in my case it saved me 10 days of angst about my prognosis.

Good luck. Nothing will completely quell your fears but here's hoping for the best news. 🍀💕

Hugs,

Sue O

[Sallyann43]

Hi Alex, I know it's easy for me to say (it wasn't at the time) but please don't be frightened of the MRI scan ... they definitely only scan your boobs and that is all they are interested in ... I was diagnosed with 2cm lobular cancer last October and then had MRI which picked up that the lump was actually 4cm with a smaller lump behind ... I was given the choice of lumpectomy or mastectomy and chose the latter ... had my op in December and got the results on Friday just gone ... I had a 4cm lump plus a 2cm lump .. both grade 2 and no node involvement ... I thank god for that MRI now as it helped me make the decision for mx ... and the surgeon said I had made the right decision after he had performed the op ... I know it's so hard to think IT hasnt spread, that was my biggest worry but actually it was probably the best thing to have happened. Don't forget, the professionals are working for you and want the best possible outcomes so all the tests are done so that they can tailor your treatment plan just for you ...
The MRI can be noisy but I was given headphones with music playing so just sang along in my head .. the nurses were lovely and if at any time you need to stop the scan, you can as they can speak to you through a speaker system ... I got through it in one go telling myself I only need to keep still once!!
Hope all goes well and let us know later how you have got on ... sarah xxxx

[Silverlady]

Hi Alex,

I went through the same terror. My lymph nodes were clear but I still had to have a CT scan to make sure it hadn't spread. I was petrified, my heart hurt, I couldn't breathe - I felt like I wanted to scream.

The scan came back clear - just as they thought it would, my consultant said afterwards!

All this waiting for results is horrible, but they do want to check that they are giving you the right treatment.

Sending you huge big hugs.

[ann-m]

Hi Alex,

Like most things when going through this, the prospect is worse than the reality. I remember feeling very anxious about the MRI, but it is to get the all the information required to get you the best treatment plan.

Like you, my nodes were clear on US & so it remained.

It's normally done if you are younger, have dense breasts &/or if you have a lobular bc diagnosis.

It's quite straightforward, I actually found it quite interesting once, I had got over the anxiety.

Subsequently, I felt reassured it had been done as I then understood they were only being thorough.

ann x

[Jo C]

Hi Alex,

If it's a breast MRI they will just scan your breasts and not the whole of your body. It sounds like they are just doing it for confirmation and to make sure you get the right treatment...better to know whether you need a mx now rather than after lumpectomy. Try not to worry too much as it doesn't sound like they're looking for anything else.

MR is noisy and you might have to have a small injection but it isn't too bad.

Hope all goes well.

Jo xx

[Alex1967]

Well I'm feeling a mess at the moment - my mind is all over. I'm booked in for a lumpectomy on 1st Feb but my consultant wants me to have an MRI before surgery due to my age (49) and dense breast tissue to make sure they can see what they saw on ultrasound (22mm lesion) and to make sure mx isn't the preferred option. I'm petrified of the MRI. What if they see it's all over my body? They said my lymph nodes look normal on ultrasound but I know they can't guarantee it. I just so scared at the moment and it's putting pressure on my family. Had a huge argument with my husband today because he is trying to act normal which I understand but he's making things too normal - like he'll say let's go to the local for a drink (on a Monday) and I'm like we don't normally do that - so when I say I don't feel like going he will then accuse me of being negative. This diagnosis puts so much strain on family life it's makes me sad. What happens at the MRI? Petrified and sad

[Pam75]

Hi Kim..how odd...mine was stage 2 but very aggressive...3 nodes removed..all clear onco type 13..how bizarre we've both had thyroid cancer I go for check ups and blood test to royal Liverpool...now today starting my first session of chemo at 11am..keep in touch x

[Pam75]

Sorry Jane...knew I'd missed someone lol

[Silverlady]

Kim,

I'm so sorry that you're going through the horrible waiting for results time again. It just seems never ending.

Good luck for your scan on Monday.

Sending you huge big hugs.

Susan x

[Kimucoughdrop]

Hi Pam

good luck with your radiotherapy I finished mine in September and it was ok I promise. Just wanted to say I too had thyroid cancer in 2000, you think you have had your lot don't you and then we went and got another one, My breast cancer was found last April IDC 14mm grade 3 no nodes and Oncotype 20 so no chemo. I had a CT scan last week which found something on my liver so I am having a MRI on Monday which I am really scared about. It is a rollercoaster for sure.

Kim xxxx 

[Silverlady]

Hi Pam, good luck with your rads tomorrow, I'm sending you a huge big bear hug to take your nervousness away.

Come into the coffee lounge, that's where we all are now.