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How long have you waited before treatment started?

39 REPLIES 39
Meri
Member

Re: How long have you waited before treatment started?

Support, not emotionally. But do have personal assistants/carers and just interviewed new one today.

 

i get funds from social servicies to pay PA/Carers.

 

I have three,but not at night.

 

I will be so releived once process starts but am scared about coping, so much to organise re help.

 

Six weeks just seems endless but now its 10 days left 🙂

 

 

Nixons3
Member

Re: How long have you waited before treatment started?

Feel the same Carole. Hope you get surgery asap x
Nixons3
Member

Re: How long have you waited before treatment started?

Sorry to hear that Meri. Do you have good support around you? Sounds bloody tough xx
Meri
Member

Re: How long have you waited before treatment started?

I was diagnosed 28th Feb, op planned for 12th April so six weeks.

 

I did ask why waiting was more then NICE guidelines and was sharply told the NICE guidelines 61days!

 

So thats me told. 🙂

 

Its been awlful and still got just under two weeks to go.

 

I am a wheelchair user and am finding they are not adressing how I will manage after op or with treatments.

 

Makes me wonder if the BCn's receive any training on helping disabled patients, already poorly, reeive social care.

 

I too would rather have mastectomy then have readiation and hormone drugs.

 

Really worried.

 

I hooe your op goes really well though.

 

 

Carole M
Member

Re: How long have you waited before treatment started?

I went to breast clinic on 22 February where they did biopsies. Returned on 9 March where cancer confirmed and new areas found.  Numerous more biopsies. Saw breast consultant on 29 March with news of lots of stuff going on all around my breast but hoping not in lymphs. I've opted for mastectomy, but they wanted me too consider reconstruction options.  So now I'm seeing BCN on Monday and have to wait until Friday 7 April to talk to surgeon who can do reconstruction. 

Then I'll have to see when he can do op.  I'm thinking this is all taking too long with all this cancer growing in my boob and want surgery ASAP.  I'm therefore going to ask on Monday how much it will delay surgery by asking for immediate reconstruction. Don't know whether to just tell them to do MX ASAP and worry about reconstruction later.  I only want a simple silicone implant.

Karen C
Member

Re: How long have you waited before treatment started?

No Nixons3 I've not been told anything more than to go back next week for results x
Alex1967
Member

Re: How long have you waited before treatment started?

Yep Raitchr - my MRI said 25mm lump but after mastectomy the pathology said 17mm - took my down from stage 2 to stage 1 I think
Raitchr
Member

Re: How long have you waited before treatment started?

My biopsy showed what type it was but then had to have hormone blood test afterwards. They also can grade and stage it although this sometimes changed after surgery when then whole lump is analysed.

Nixons3
Member

Re: How long have you waited before treatment started?

My biopsy confirmed what type Karen. Have they told your the next step?
I hope I get similar response to you Alex.
I don't watch it Melia! It's so scary. Everywhere I turn there is cancer it seems x
Alex1967
Member

Re: How long have you waited before treatment started?

My biopsy showed the type yes
Karen C
Member

Re: How long have you waited before treatment started?

Can they tell from the biopsy what type it is? Sorry if thats a dumb question I know nothing about any of it. My main symptom for getting checked in the first place was changes to the nipple but they didn't take any biopsy from there.
Alex1967
Member

Re: How long have you waited before treatment started?

Hi Sarah - my surgeon didn't need a lot of persuasion (think the radiologist had already given him the heads up of her professional opinion) and he just wanted to make sure I was confident with my decision and understood what I was choosing - had to then have the discussion about reconstruction but that was quite quick cos I knew what I wanted x
Melia
Member

Re: How long have you waited before treatment started?

I do really sympathise as much as all the waiting has been hard I found that first week terrifying think I didn't stop crying. And was shaking and felt sick when the actual day came. Xx
Melia
Member

Re: How long have you waited before treatment started?

Karen they might just want to give u a kind of treatment plan and tell you what sort of cancer it is and if it's hormonal or not. That's what they told me anyway a week after diagnosis but are doing further tests just to make sure I guess x
Melia
Member

Re: How long have you waited before treatment started?

I'm the same nixon feels like it's been going on months probably all the stress of waiting and worrying! I'm even more terrified of the op now after watching emmerdale x
Karen C
Member

Re: How long have you waited before treatment started?

Hi Nixons3, I've only been told it's for the results of the biopsy but there were a number of areas and two were taken. They did say there was a chance it might come back negative so further biopsies may be taken. It all seems a bit pointless if they are so sure it's cancer just by looking at it!
Nixons3
Member

Re: How long have you waited before treatment started?

Hi Karen when you go back what have you been told this is for? More tests or imaging? Or the treatment plan? I'm sure your BCN will be able to help. The waiting is torture. I feel like I was told months ago but in fact it's a matter of weeks. X

Nixons3
Member

Re: How long have you waited before treatment started?

Thanks Raitchr. Hope you're doing ok x
Karen C
Member

Re: How long have you waited before treatment started?

Hi, I'm only 6 days after diagnosis. I go back a week today but struggling with the wait. I am worried that the biopsy results will only confirm what I've already been told and that they'll then say more tests, more waiting. I need an answer. Would a BCN be able to tell me what will happen at the next appointment? Thanks for asking this question Nixons3.
Nixons3
Member

Re: How long have you waited before treatment started?

Thanks Patricia. I shall mention this.
Nixons3
Member

Re: How long have you waited before treatment started?

Thanks Melia. Yes I will call her tomorrow - maybe I need to be a bit more proactive. I spoke to another lovely nurse but I think I kind of thought she would get in touch!im quite clearly not living in the real world lol. I know they are very busy. Yours does seem quite quick too. Good luck x
Nixons3
Member

Re: How long have you waited before treatment started?

Wow Jobey that seems super quick! X
Nixons3
Member

Re: How long have you waited before treatment started?

I think Alex I would feel similar to you actually. Was he quite open to that or much persuasion? X

Nixons3
Member

Re: How long have you waited before treatment started?

Thanks Ann. Think I'm just having a mad panic as it seems a lifetime ago that I was diagnosed (in reality a couple of weeks!) x

Nixons3
Member

Re: How long have you waited before treatment started?

Thanks Alex- please don't worry about rambling! You should meet me in real life! Ok thank you. I'm hoping mine is no longer x

Jobey68
Member

Re: How long have you waited before treatment started?

I was diagnosed on 11th March 2015 and had my op on 27th March, I was told the guidelines were 3 weeks from diagnosis , mine was all pretty straight forward so didn't ask anything more but I was really surprised at the speed of things Xx 

Melia
Member

Re: How long have you waited before treatment started?

Hi nixons I was diagnosed exactly 2 weeks ago and seems like the longest most surreal 2 weeks ever. I'm scheduled for mri next week await results of that and then scheduled for op 17th of April. This could not doubt change though. But it's all pretty quick for me. I was only given my op date yesterday by my bcn when I called her with a different issue... do you not have someone else who picks up queries to your bcn when she's away? Ive spoken to a couple of different ones at my clinic if she's not available x
Patriciamay
Member

Re: How long have you waited before treatment started?

Hi it is 31 days from diagnosis/decision to treat.  It is very clear, and I measure this on a regular basis.  Xx

Raitchr
Member

Re: How long have you waited before treatment started?

Hi I was diagnosed 13th Feb after being referred to breast clinic with a lump, had mammogram and biopsy. Also had Mri at later date to check size of lump and check if left boob was clear (it was). Then had to go back to see Consultant for Mri results and agree  surgery on 6th March. Got cancellation at 2 days notice and had mx 17th March. The 31 days guideline for treatment starts from when you agree type of surgery and not from the date diagnosed.

 

Hugs to everyone waiting, it is a very stressful time.

Patriciamay
Member

Re: How long have you waited before treatment started?

Hi. Nixons, most areas have their own guidelines, and as a minimum they will follow NICE guidelines.  If you are in London they are easily accessible via the net.  Broadly the standard is 31 days from diagnosis to first line treatment, and then a further 31 days for second line,  however, clinicians can obviate that standard on "clinical" grounds, i.e. Need for further investigation.  There is a lot more detail and worthwhile reading.  Hope that helps.  Xxxx

Alex1967
Member

Re: How long have you waited before treatment started?

So 6 weeks from diagnosis to surgery (god i'm rambling)
Alex1967
Member

Re: How long have you waited before treatment started?

Sorry 22nd Nov was my mammogram - my USS and biopsy was 15th December..... so 15th Dec to 1st Feb knowing I had cancer x
Alex1967
Member

Re: How long have you waited before treatment started?

So in answer to your question title, USS and biopsy 22nd Nov (told it was cancer then), 10th Jan biopsy results confirmed cancer, MRI 22nd Jan, further USS 30th Jan, mastectomy 1st Feb....... so 10 weeks??? ish???
Alex1967
Member

Re: How long have you waited before treatment started?

The waiting is horrible, and I empathise as mine was diagnosed before xmas and had to wait until the new year when clinics were back up and running, felt like forever! Everyone is different with how they feel about surgery - I was like you, take it off, whereas some women would prefer to try and save their breast if they can. My surgeon said to me "how would you feel if I did a mastectomy and the other areas came back benign and you could have just had a lumpectomy?" - I said well I would just look at it as a bonus but we both know they aren't benign! He said that's all he needed to know - informed choice, my choice, my body. I'm now cancer free after all removed and nodes clear and I am determined to stay that way!
ann-m
Community Champion

Re: How long have you waited before treatment started?

Hi Nixons,

These early days of diagnosis are the pits, inevitably, everything seems to take an age & time takes on a different meaning. 

It sounds like you have the necessary appointments in place to get the diagnosis finally completed, so it will progress, although it does not help the anxiety. 

When at this stage, my investigations were on a similar timescale. 

As you say, hopefully your BCN will be able reassure you. 

ann x

Nixons3
Member

Re: How long have you waited before treatment started?

Thanks Alex. This is my concern - more biopsies next week and then more waiting. Part of me just wants them to take both breasts anyway(not meaning to sound flippant as I realise this is a huge thing). My worry is more that is spread elsewhere but nowhere is tested or imaged? Will pursue them I think xx
Alex1967
Member

Re: How long have you waited before treatment started?

Hi Sarah - after my MRI they rang me a week later and said i had to go in for ultrasound as it had showed further suspicious areas (extra to the original lump). I went a couple of days later and she scanned my breast with the USS and said I had quite a few small areas that she would need to biopsy. I questioned her (radiologist) about what she thought they were (i.e. cancer or benign) - she said 100% malignant as exactly the same as main lump - I then queried why biopsy and she said they had to "prove" they were malignant. I dug my heels in and asked to speak to the surgeon because I didn't want to wait another 2 weeks for the results to come back malignant when we all knew they would! The surgeon agreed to do a mastectomy 2 days later (which was my original surgery date for lumpectomy before other areas were found). The pathology came back all malignant so I am so glad I stood my ground.
Nixons3
Member

Re: How long have you waited before treatment started?

Thanks Jo. I am starting to panic a little now! Will definitely call tomorrow. Just wondering if there is a guide/timeline they need to act by? (Not sure that makes sense!) x
Jobey68
Member

Re: How long have you waited before treatment started?

Hi Sarah , it can certainly feel like it's endless when you are first diagnosed and I'm afraid to say that a good BCN is like rocking horse poo! Mine was ok when I saw her but I didn't have the need to call her so I can't really comment on her use afterwards! Don't be put off getting answers though, keep badgering the hospital as you are entitled to know exactly what is going to happen and when , I'm sure if the " professionals" had to go through what we do then the way things are done who dramatically change! Xx Jo 

Nixons3
Member

How long have you waited before treatment started?

Hi all
I was diagnosed 2 weeks ago yesterday. Had an MRI today and back next Thursday for more ultrasound and biopsies. So this means another wait for results Before I find anything else out? Plus we have Easter and I'm getting very concerned that I've almost been forgotten! My BCN was on holiday for the last 2 weeks and I've not heard anything. I'll call her tomorrow but just curious as to others experiences? Thanks Sarah