Fed up with waiting

[Guest user]

Thanks, highball. I have my planning appointment tomorrow. I posted an update on another thread saying that I did look into private radiotherapy (at a hospital where the same oncologist also works, apparently) and it would have been over £8,000. Two oncologists and my GP thought that the wait wouldn't make any difference in my case, even though it will be 11 weeks since surgery. I managed to get it brought forward one week, as I should have seen the oncologist at the result's clinic but, as she wasn't available, I wasn't put on the waiting list until a couple of weeks later. So, provisionally, I am due to start on 8th Dec, spanning Christmas and New Year.

I am encouraged by your son's opinion, but it is worrying all the same.

Ann x

[highball]

When I used adjutant on line a while ago , it just asked if I was a health professional, so I said yes!

There was no waiting list for rads at all at Ipswich hospital but mine were delayed because I had post-surgery problems and my wound wouldn't heal. I had my WLE on Jan 9th 2008 and rads began on March 11th, so sooner than yours but still double the 4-week 'target'. Delays aren't at all unusual apparently and my consultant wasn't concerned at all, even though my lump only had 1mm clearance on one side because it was close to the chest wall. My son, who is a radiotherapist, wasn't concerned either. He proferred the information that in most cases rads are not a big deal in the treatment of primary breast cancer - it's a good excision that's all-important. Rads mop up cells that might have been dispersed by the surgeon's knife, and a few weeks isn't going to make any difference in seeing them off!

I'm sure it's possible to have private treatment, but presumably you would have to have the whole lot done privately. I have 2 friends whose experience of mixing private and NHS breast cancer treatment isn't great, as there seems to be no system of communication between the two, even when it's the same consultant!

Good luck with your treatment, whatever you decide. I would certainly have a discussion with your consultant if you're worried about the wait.

[Guest user]

I am thinking of ringing my BCN to ask her to ask my surgeon whether he has concerns about me having to wait at least 12 weeks for rads from the time of my surgery.

If so, I would like to know how much it would be to have it done privately. Does anyone know? My life is precious, even if the NHS purseholders don't think so!

Ann x

[Guest user]

Caro

I thought you had to sign in to use Adjuvant Online. How did you manage to use it?

There is another one:

http://cancer.lifemath.net/breastcancer/therapy/index.php

but I would like to have a look at the one the oncologist used. Any tips?

Ann

[Guest user]

Rose, chemo will definitely be recommended to you because your tumour is grade 3, and because you're HER2+ you have to have chemo in order to have herceptin. My tumour was 11mm, grade 3, oestrogen postive, HER2-, no lymph node involvement or vascular invasion, and chemo was strongly advised. Your surgeon or oncologist will be able to tell you how much difference chemo will make to your 10 year survival (for me it was about 6%). There is a website called 'adjuvant online' which the doctors use to get this info.; you can access it too and plug the data in yourself (even though it's supposed to only be used by health professionals). Although we're at lower risk of the cancer spreading because of no lymph node involvement, there is still a risk (I think about 25%). Good luck with your surgery on Tuesday.

Topcat, I waited 12 days to get the results of my biopsy back. It differs between trusts. Chase it up if you're worried.

Caro xx

[Guest user]

Rose - Good luck with your op.

I still don't have definite dates for radiotherapy, but today they said I am very provisionally booked to start on 15th December, and will keep having breaks over Christmas and New Year. It will be 12 weeks after my surgery and I find that extremely worrying. The NICE guidelines are for 4 weeks, ideally.

I am sure it varies in different parts of the country. The hospital said they are extremely busy at present. What is annoying is that I was told there is a local BUPA hospital which could do it sooner. Wouldn't it be nice if the NHS would pay to use their facilities when they cannot cope?

Has anyone else had to wait that long, for no reason other than the NHS waiting list?

Love Ann x

[Guest user]

Hi Ann,

Glad you are finaly getting somewhere with your report, please let me know if you manage to find out anything new when you do get it.

I am going back in for more surgery on Tuesday, I think I must be one of the first of the morning as I have to arrive by 7.30am! The first surgery I had was wire guided, so had to attend for the two wires at 8.30am, then had to wait untill 3.00pm for opp, and this was brought forward as I was orignaly down to be the last! So hopefully Tuesday will be a better experance. I'll let you know.

It all seems to be taking a long time now, I had a letter from the hospital this morning telling me my appointment to see the oncologist is on Nov 24th so, wont know about treatment till then. But the BCN did say that the oncologist had seen the report from the first lot of surgery and was going to recomend chemo, so at least I'm not wondering about that.

Is there normaly a delay for radiotherapy, or does it depend where you live in the country? I was told that I would have to go to Cheltnem for mine.

Love Rose X

[Guest user]

Hi topcat
How long since is it that you went for biopsy?? Some hospitals tell you more or less straight away.
I went through the same wait in the summer (luckily my GP's receptionists are lovely! I was ringing them every other day and doc said it's ridiculous having to wait!) my results for the core biopsy took 3 week to come through and i've had no follow up appointment! I had a shooting pain which made me check my breast and i found a lump, since the results this lump has increased in size 2 more next to it and painkillers every 4 hours for the pain. And i'm off for new tests on saturday(saw the new consultant last week)
Tell your family how you are feeling it may help them understand you at the moment! tearful, anger and frustration all springs to mind with me!
Take care and fingers crossed all is ok
Tina xxx

[Guest user]

Topcat - Each time I had something done (biopsy, MRI, etc), I had to wait about two weeks for my results. They have a results' clinic on a Thursday at my hospital and so I had to wait for that. You can phone your Breast Care Nurse and ask if she can tell you them first.

Rose - I chased the pathology report again. The secretary was under the impression that I was waiting for a letter from the surgeon, which contains a potted version. I explained that I wanted the actual report. Oh yes, they can just print that off! Back to square one. She will send me a copy. Maybe, I shall get it in time for Christmas, with the postal strikes. Couldn't she e-mail it? I still haven't got a date for radiotherapy. How are you, by the way?

Love Ann x

[Guest user]

Hi Top cat
My biopsy results took a week. Why don't you phone your breast clinic and ask when to expect the results. I have always found the nurses at the clicic very helpful and they will phone you back if they don't have the answers.
Keep strong- good luck
XM

[Guest user]

I am so sorry to hear about the delays you have all experienced and hope that you do finally get your results- it's now two years since I was diagnosed with DCIS (high grade, extremely active cells) and had a WLE with 25 sessions of radiotherapy.

I spent almost a year waiting for the results of the biopsy so that I could make an "informed" decision about taking Tanmoxifen - then they said there were no results as they didn't routinely test!!!!!

I'm still choosing to take the Tamoxifen - even though they can't say for sure whether I need it or not - better safe than sorry 🙂

Love to you all
Maddy x

[Guest user]

Hi, i was just wondering could you contact your gp to see if they kno anything? seems odd to not be told when your results will be back, the waiting must be awful for you. So sorry to hear you are going through this, i hope it works out well for you. Dont be afraid to nag them.
take care
anna

[June_BCC]

Hi Topcat

Welcome to the forums, I’m sure other users will be along to support you soon.
In the meantime you may find it useful to contact our free helpline on 0808 800 6000, opening hours are Monday to Friday 9.00 – 5.00 and Saturday 9.00 – 2.00

Best wishes
June, moderator

[Guest user]

im new to this site, so sorry if i have done this wrong way , to give you a little history was sent to breast clinic by GP for tenderness in right breast , couldnt feel no lumps , had mamogram right breast fine but said i had calcifications in left breast and needed core biopsy had that last tuesday but they didnt tell me anything , no follow up appointment made , havent heard anything about biopsy results and really want to know how long they normally take , i would never tell my family but im so scared and just want results one way or anouther , i dont want to make a fuss but i just would like an estimated time thankyou tc

[Guest user]

Hi Ann,
My report is two pages long, and I think it is the condenced version of all the separate results which were put together prior to my appointment with the surgon. If you remember, my results were delayed for a week because they weren't back. I think they waited for all the results and wrote the report just entering the 'important' information. I expect there are separate reports in my file from each test but I haven't seen them.

No, I haven't learnt anything new from the report as most of it was explained to me at the time. But it is still good to have the copy for my own records, and seeing the report confirmed to me that I knew as much as there is to know, if you know what I mean. Some times if you don't ask the right questions you don't get the answers you want! Having said that, they didn't say anything about lympho-vascular invasion, but with your help we were able to work that one out.

Good luck chaceing yours, but with the postal strike.....

And Good Luck with your treatment. I will be looking out for your posts.

Love Rose X

[Guest user]

Rose

I'm glad you had no trouble getting your report. When I chased mine up, the surgeon's secretary told me it had to be typed somewhere else and then come back for signing. I don't know if it was going to be typed up anyway, or if it was being done just for me. I assumed they would just print off a copy. The file seemed to consist of forms and letters, from what I could see. The surgeon wasn't looking at an actual report.

Did you learn anything new about your results?

Ann x

[Guest user]

Hi Ann,

I just asked the surgon for a copy of the report when I saw him to get my results, and they photocopied it there and then! Think he thought I was trouble as I asked to see my mamagrams and have them explained too! I just felt that I needed to be able to see what all the fuss was about, as I had not felt any lump or had any pain etc prior to this being found on a routine mamagram. It has helped me come to terms with it, now that I've seen it.
Good luck tracking yours down, I can't see what the delay is.

Love Rose X

[Guest user]

Rose

I guess that means you have no LVI, which is great. I also had a clear sentinel node and no LVI, so I think it unlikely that it has spread. Positive thinking! My lump was a similar size to yours, but grade 2. I am still waiting for my pathology report. Did it take long to get yours? I have already chased it once.

It is only natural to worry about the side-effects, but everyone is different. We worry about any new part of this, don't we? It is just a case of dealing with whatever happens, one step at a time.

Good luck! Love Ann x

[Guest user]

Hi ANN,

Thanks for the reply.
I know I must be positive, and I am greatful that they are doing all that can be done to help me, so it seems silly to be worrying about the side effects.

Sorry I got the size wrong it is 17mm not 1.7mm, which would be very small. Any way, regarding the lympho-vascular invasion, they didn't say anything but I asked for a copy of the report and there is an entry which says:
'Vessel invasion: Not identified.'
Do you think this is the same thing?

Take care, and good luck with your treatment.

Love Rose X

[Guest user]

Rose

If you are HER2+, they can give you Herceptin and I understand it works best with chemo. Oestrogen + is good, as this gives another way to treat this, too.

Regarding the clear nodes, did you ask about lympho-vascular invasion? If that was ok too, it is unlikely to have spread, from what I understand. Your lump was relatively small, too. You have lots to be positive about. Stay strong. You will get through this. Have a look at the chemo threads. You may get some advice from there.

Good luck with the surgery. Will be thinking of you. Love Ann x

[Guest user]

Hi girls,
And thanks Ann 04,

Sorry not got back to the forum before but trying to keep myself bussy to stop me from worrying.
Well, got the results yesterday:

4 nodes remover, all clear
1.7mm tumor
Grade 3
Oestrogen receptor +
HER 2 +
Margins not clear

So, surgery booked for 3rd Nov.

I have been told that I will have to have chemo and rads later.

I was feeling so high at the news that the nodes were clear, but apparently this doesn't necessary mean that the cancer hasn't spread!
I have mixed feelings at the moment about the results, I thought that clear nodes would mean that chemo would not be necessary, perhaps it's because it's a grade 3. Has anyone got any views on this? Grade 3 seems so frightening.

I'm realy worried about chemo, I've heard that it can make you sick which I am terified about, I realy hate being sick! And my daughter is getting married next summer and the thought of loosing my hair and having to wear a wig is making me so sad. I know I should be greatfull that there are drugs to help me fight this, but it's just that I'm frightened of loosing control of what happens to me.

Also, I am feeling a bit down because I have an infection in the wound under my arm, and had to have some fluid drawn off the lump that has developed there. Tipical, the scar on my boob has healed perfectly and they will be reopening that soon!

Sorry to have gone on so much. Take care every one.

Love Rose X

[Guest user]

Rose - I was given a leaflet when I had the biopsy, explaining what they have to do (drying it out, etc) and saying that the results may not be back by the time of the appointment. I don't think it is anything sinister - just their workload, probably. They then have a team meeting to discuss the results and they all have to be there. One time, my results were delayed because someone was on holiday.

My BCN offered to ring me when they were in, before the appointment, which she did. You could ring early next week and ask her to do this. I imagine all the results come back from the lab at the same time, so they either have them or they don't. Don't read too much into it.

Thanks for your good wishes, by the way. Good luck.

Ann x

[Guest user]

Hi girls,

I am so feb up and disapointed.
My BC nurse has just phoned me to say that although I was due to get my results tomorrow, they are not back so now I have to wait untill next Friday, a whole week! I challenged her, and asked if any were back but she insisted that none were available untill the full report next Friday.

I am so worried, why would they take so long? And surely there must be something she could tell me. Do other hospitals wait untill the full report is available even if it delays results for a full week?

Glad your results were good Ann, take care.

Rose X

[Guest user]

Rose - We know what you are going through. I went through it last week - good results, thankfully.

Is it worth ringing your BCN to see if she can give them to you before the actual appointment, if you can't wait? I did, and although they weren't in, she rang me when they did arrive, the day before the appointment. Well, she gave me most of them but she wasn't sure about the margins - but they were clear. It made it easier sitting in the waiting room the next day.

Good luck! Ann x

[Guest user]

Hi girls,

You are right, the waiting is unbearable. I get my results on Friday, 9 days post opp. I think I am more nervous about the results, than I was about the results of the biopsy. I can feel myself getting more and more worked up as each day passes. I am trying to prepare myself, but at the same time stay positive.

The only consolation is that as soon as they know the results they can start treating it, and thats a positive thing.

I wish you all good luck with your results.

Be kind to yourselves

Love Rose X

[Guest user]

I agree that waiting is absolutely awful - mentally, I mean. I did have to wait two weeks and a day for the results after my surgery (NHS), but I believe that some of the tests do take a while for the lab to process, as some specimens have to be dried out first.

My Mum had private treatment about 10 years ago, and the main differences I can see are that, she had a private room with en-suite, and I was in a ward of 4 beds (with an en-suite!), and the length of the waiting times in the actual hospital waiting room. I had to wait nearly two hours on Thursday.

But as far as the actual treatment goes, I am really pleased with my hospital. The appointments came through pretty quickly and I know that my surgeon does private work as well, so the quality is there! I don't really have any complaints - well, other than the cost of the parking!

Ann

[Guest user]

thanks for replying Marion. I agree - I thought paying for my treatment would serve me better but I don't think so, if this hospital is anything to go by.

I called today - they have my results but the consultant hasn't seen them yet as he has been on hols. I have an appointment tomorrow so I will have my answer then. I just hope the worst is over now.

Thanks again.

[Guest user]

It is a real pain waiting for results but hopefully you will get some good news soon. I always though that paying for treatment meant better and faster. Perhaps the hospital you attend need a good boot up the proverbial. Good luck anyway.
Marion.

[Guest user]

I had a lump in my breast removed 11 days ago. The consultant whose care I am under was away last week and he said that results would take approx 10 days to come through anyway. I will call his secretary tomorrow morning to see if they are in yet.

I am so worn down by the waiting game. I have posted on here before about the stupidly long wait I have had with this private hospital I am using - waiting 3 weeks for mammogram results, would have waited a further 2 weeks for an ultrasound appt had I not kicked up a massive fuss. Everything took so long up to that point that I refused the biopsy route and insisted on removal of the lump. It is six weeks since I saw the consultant for the first time and I still don't know what this b****y lump is.

On the one hand, I know I should feel comforted by the fact that the consultant is so sure it is fibroadenoma. However, mistakes are made and by his own admission he could not be 100% certain without proper path testing on a sample/entire lump. I just feel emotionally exhausted. Like my entire life has been on hold and I cannot move on.

Sorry. THere are no answers to this one. I just have to sit and wait it out. I just needed to share with someone who might understand.

Thanks.