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Forum: Standards in diagnosis and care

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What is this topic for?

This topic is to help people find support and information about standards in care and diagnosis. For example, you might share information about what you can expect (perhaps in terms of waiting times or information). You might also share information abo...

Posted by Leah BCC on Fri Mar 12, 2010 12:33 pm with 30 comments

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Hi, I'm also stage 4 with mets in the bone, but I still have a yearly mammogram on my remaining breast. This is because you can still get a new primary in the remaining breast, and my Oncologist is of the view that removal of the primary significantly ...

Lemongrove, Tue Apr 12, 2011 8:39 am
CHECK UPS AFTER TREATMENT FINISHES

Diag Aug 2010. Had Masc followed by Chemo and Rads and on Tamoxifen since March. Saw Onc 6 wks after rads ended (May) and again today and was told no need to be seen for another year by him. I will get Mammo next week then one every 2 years. I am in Sc...

Posted by haughtaj on Mon Aug 15, 2011 9:51 pm with 22 comments

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Hi CheshireCheese Thank you for your kind words. I do have a BCN but she is ridiculously busy and somewhat inaccessible because of this. Having read that most people have at least some check ups, I am going to ask again and if I still get nowhere, ...

Pippadidoodah, Wed Jan 25, 2012 1:13 am
What's yours like?

Hi All, To recap: dx nov 2010 with grade 2 multi-focal lobular. Had 6 FEC and then SNB which confirmed it still in 4 lymphs. Then full clearance, mx + immediate recon with LD. 6 weeks of rads and now 5 years of Tam. I've got an appt with my consultan...

Posted by staycalmandcarryon on Fri Jan 06, 2012 7:50 am with 21 comments

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truffle shuffle&nymeria it is reassuring to know that the medical teams are vigilant and you feel well looked after. There seems to be a wide variation in how everyone is being followed up and as we are all as individual as our BC's I suppose the most...

Tina46, Mon Jan 09, 2012 8:27 am
Chaperones

I recently went for an appointment to see a plastic surgeon and was a bit surprised to find that there was a woman sitting in on the consultation without any explanation or "if you don't mind" from the consultant. When I queried this he explained that ...

Posted by CheshireCheese on Wed Dec 07, 2011 4:21 pm with 4 comments

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For info - if you have a non-medical chaperone - you can ask them to stay on the otherside of the curtain if you wish. If your surgeon objects to that then insist on a nurse. I've always had a nurse present at the start of my consultation and until I...

Alice Cliche, Thu Dec 08, 2011 7:10 pm
am i being unreasonable, expectingto see my onc sooner?

i have been in touch with breast care nurse today, describing my symptoms, after recurrence in july,she tells me the earliest appointment i can have is 20th dec, despite the onc telling me on my last visit that if i had any concerns, i didnt need to wa...

Posted by jusmejp on Tue Dec 06, 2011 5:58 pm with 6 comments

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thanks, dawn....u r absolutely right when u say that it is hard to push for things, i find that really difficult,but......no more !!!! i am gonna stand up for myself, becos noone else will, lol...u really are an absolute peach xxxxx jacqueline

jusmejp, Thu Dec 08, 2011 12:10 pm
help, waiting list for radiotherapy??

Hi, I was diagnosed on 22nd sept. Grade 2, no lymph nodes infected, 9mm with Good clear margins, had wle on 20th oct, started tam on 27th oct, went 2 see Onc doctor and 2 discuss my radiotherapy treatment, and have been told there is A 8 to 12 week wai...

Posted by gordok1 on Fri Nov 18, 2011 8:28 pm with 12 comments

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I was also treated in Glasgow. I'm sure the guide lines are 6weeks between surgery and start of rads. When I questioned the delay I was told, as Pauline was, it was due to people not able to keep appointments due to the severe weather. I was told that ...

Tiny Tina, Sun Nov 20, 2011 11:07 am
Lobular follow up

Greetings All I completed my treatment for lobular 10 days ago. (12 months later: chemo, mx, recon, rads and now tam). I've had my first annual check up today in the form of a mammogram. I was wondering what follow-ups anyone else has had. I know ...

Posted by staycalmandcarryon on Wed Nov 09, 2011 6:40 pm with 0 comments

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Greetings All I completed my treatment for lobular 10 days ago. (12 months later: chemo, mx, recon, rads and now tam). I've had my first annual check up today in the form of a mammogram. I was wondering what follow-ups anyone else has had. I know ...

staycalmandcarryon, Wed Nov 09, 2011 6:40 pm
RE: Looking for a new hospital

Dear ladies, I'm looking for a new hospital to have my follow ups and maybe treatment. After experiencing a horrible standard of care at Royal Marsden, (RE: Royal Marsden Excellent Care?), my GP has recommended me the Breast Cancer Unit at UCLH but, I...

Posted by happynipple on Wed Oct 19, 2011 6:08 pm with 3 comments

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Sorry its a couple of weeks since you posted. I have recently had a lumpectomy and sentinel node sampling at UCH. I am pretty impressed. I have seen 2 consultants and a registrar. All have been efficient, approachable, and reassuring. Also very charmin...

valos, Sat Nov 05, 2011 4:23 pm
IF MAMMOGRAMS DON'T SHOW THE LUMP

I'm not sure if this is under the right topic area but I can't see where else to put it! Last year I found a lump in my breast (since had lumpectomy, lymph node clearance, rads and am on tamoxifen for 5 years). My question relates to the follow-up ch...

Posted by linky on Fri Jul 29, 2011 10:56 pm with 37 comments

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Anoifmaeve, Ditto here - strong family history, had a sudden swelling - hadn't noticed anything before, nothing showed up on ultrasound (apart from swollen lymph nodes...ummmmm....hello...!) or mammogram, was dismissed 3 times with antibiotics with th...

Sandytoes, Wed Nov 02, 2011 1:12 pm
MEDICAL MALPRACTICE

Hi Dear! I am just starting on this forum and I would like to know something about the English medical corps and law. I am diagnosed with breast cancer (Grade 2;HER negative:Invasive Ductual Carcinoma) My surgery (lumpectomy) was 5 weeks ago and I can...

Posted by Catrine on Fri Jun 25, 2010 8:05 am with 3 comments

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Hi Catrine, Sorry to hear about your ordeal. Yeas, I think the PALS is the best way of starting as they can also refer you to other organizations to raise your complaint like the General Medical Council. http://www.gmc-uk.org/concerns/making_a_compla...

happynipple, Thu Oct 20, 2011 9:55 pm
delays + mix ups, how often have you experienced them?

I'm looking for similar experiences both in the private and NHS, primary or secondary. I would like to know how often this happens and what are you suggestions of improvements or even how they might be avoided all together. Maybe a place to rant and sh...

Posted by m1yu on Wed Dec 01, 2010 6:25 pm with 36 comments

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Hi, I had my treatment as a NHS patient. I've experienced delays,mix ups and hell!. First of all, as many of you, when in a regular gynecologist examination I commented I could feel a lump, I was dismissed as, nothing palpable, and probably something ...

happynipple, Thu Oct 20, 2011 9:46 pm
Website for Oncologists

Hi I like to keep up to date with the Science side of Breast Cancer. There is a website that oncologists use that gives percentage outcomes with particular treatments. I saved it in my favourites and have somehow managed to lose the link. Does anyone k...

Posted by Kathy on Wed Oct 12, 2011 6:57 pm with 5 comments

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Are you thinking of adjuvant online?

RoadRunner, Thu Oct 13, 2011 1:27 pm
mammogram - when did u have the first one?

Hi I saw my breast consultant today and had a breast exam etc. I finished chemo in august and radiotherpy last week. He said that he would see me again in 3 months but i wouldn't have my first mammogram then which would be a year after diagnosis aS it ...

Posted by beardie on Mon Oct 10, 2011 11:44 am with 3 comments

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I'm a four yr girl and mine have all been annually from dx. My friend who shared the same consultant was told by him they don't like doing them more frequently as they have a culminating effect. Swapped surgeon in march as had an awkward partial recon ...

Blessing, Wed Oct 12, 2011 9:23 pm
DITI - Digital Infrared Thermal Imaging

Has anyone had this? I understand that it can detect changes at a very early stage. It took 3 trips with mammograms and scans before my tumour was found and confirmed by biopsy. I had a slight puckering/dint above my nipple and was refered by my GP n...

Posted by KatieF on Mon Oct 10, 2011 12:36 pm with 0 comments

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Has anyone had this? I understand that it can detect changes at a very early stage. It took 3 trips with mammograms and scans before my tumour was found and confirmed by biopsy. I had a slight puckering/dint above my nipple and was refered by my GP n...

KatieF, Mon Oct 10, 2011 12:36 pm
Under 40 but no more ultrasounds?

I am 37 and was dx 3 years ago. At my annual mammos ive always had an ultrasound scan too, which i understood to be more reliable as i am under 40. However, at my appt today i have been told that guidelines have changed and that ultrasound is now onl...

Posted by lolly73 on Thu Mar 03, 2011 1:45 pm with 22 comments

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I have found this thread utterly terrifying. It's three years tomorrow since my diagnosis at 35, I have no children but have never been given an ultrasound, in fact at my two year check up last December I didn't even get a mammogram as they told me the...

Riggers, Fri Oct 07, 2011 1:57 pm
MRI - what happens?

I've read on another post that when you have a breast MRI you lie on your tummy with boobs dangling through a couple of holes. Is this really how it's done? My daughter damaged a shoulder and had an MRI a few years ago so I'm familiar with the rather c...

Posted by ChoccieMuffin on Fri Dec 17, 2010 11:15 pm with 22 comments

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Found the MRI ok the worse bit was the noise I thought it sounded a bit like a washing machine. Scan people lovely. Tried to think pleasant thoughts. This worked most of the time.

sunflower 1, Sun Jul 24, 2011 1:44 pm
MRI or CT bit confussed ?

Hi Just wanted to ask why some of us are sent for MRI & some CT ? my onc is going to arrange a 'scan' after my rads are finished Ive had a CT back in my teens & had a bad reaction to the dye injected .. can they do these without the dye or is that st...

Posted by mekalar on Thu Jun 16, 2011 10:14 am with 5 comments

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Thanks Ninja & finty, Oh if MRI is that slow i'll not be comfy with that I would find claustrophobic & probably have a melt down. The CT scan I had in my teens was the whole body & that only took 10 mins then they came it to inject the dye & had anothe...

mekalar, Thu Jun 16, 2011 5:04 pm
Problem with Onc!

Hi, I had a lumpectomy and 12 nodes removed in Dec 2010. 6 were cancerous and so I started my chemo treatment in Feb 2011, 3 x FEC100, 3 x docetaxel, followed by 3 lots of radiotherapy and then 5 years of tamoxifen. The Onc we saw prior to my first t...

Posted by DaisyGirl on Mon Apr 04, 2011 4:17 pm with 11 comments

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Really good news DaisyGirl - whilst it's been brilliant for me it definitely isn't worth having any intervention unless it's actually needed. Good luck with others, hopefully they'll go just as smoothely.

CaptainHaddock, Fri Apr 08, 2011 7:45 pm
When does chemo begin?

Hi, I have been dx with breast cancer and have had a WLE. since then i have been for my results which has been the scariest time of my life ever. I have been told i need a CT scan and then chemo and rads. Is the chemo and rads decided for def after re...

Posted by silvershar on Mon Feb 07, 2011 12:06 am with 7 comments

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There were 2 months between surgery and chemo for me, no one seemed very concerned! Like cat said, many factors are taking into account when deciding on chemo and which regime. X

Tina45, Wed Feb 09, 2011 7:27 pm
Frequency of mammograms post MX?

I attended hospital on Friday for my first follow up appointment (13months after DX)- i was absolutely shocked to find out i won't be having another mammogram until Dec this yr. I was told lumpectomy ladies were annually and MX ladies were every 2 yrs....

Posted by lynvee on Sun Feb 06, 2011 3:50 pm with 6 comments

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Bumping this up for you Lynn. x

Petal5, Tue Feb 08, 2011 6:17 pm
how long to wait for mamo results first year post mastectome

Hello everyone, I could really do with some help and information from those of you who have had a mamogram at one year after first diagnosis - how long did you have to wait for your results? I have just been sent an appt and am told I have to wait 4 we...

Posted by moorcow on Mon Jan 24, 2011 7:53 pm with 10 comments

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There is no way that anyone should be having to chase up the results of their mammograms. It is simply not the patient's job to have to do this. Maybe if more people complained, the powers that be might come to realise that they are not really providin...

Freespirit, Sat Feb 05, 2011 1:36 am
Oncotype DX

Hi all! Looking for a little info! I met for the first time with my oncologist today to discuss treatment and he gave me my statistics for chemo/not chemo etc and so on off the database they use to predict that kind of thing! However, he said because...

Posted by emma92 on Wed Oct 27, 2010 5:30 pm with 15 comments

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Hi Hatty Sounds to me like you were given bum info there, the Oncotype test resulted from studies on post-meno ER positive women. More likely the cost that is making them say no - or lack of knowledge about it. Sarah

CheshireCheese, Thu Dec 23, 2010 10:34 pm
Bad treatment at breast clinic

Hi all,sorry if this is a long post,you may have read my other post in worried,don't know if I am in the right place to post this,but here goes. I found a lump a couple of weeks ago,went to GP,who also felt the lump,and referred me to the breast clinic...

Posted by Jendelwin on Mon Dec 13, 2010 1:45 pm with 13 comments

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Im so sorry that you have had such a bad time, i also had a difficult time and made a complaint. I have seen 4 oncologists all under the NHS despite having private health care. I have now found an oncologist that i can work with,discuss treatments and ...

hatty, Thu Dec 23, 2010 4:33 am
Thermal Imaging

Has anyone been dx by this method . From what I´ve read about it it seems to be less invasive , and says it can detect changes in the body long before conventional methods . I know one of my friends used it as she has implants . She was very impressed.

Posted by jackwagstaff on Wed May 05, 2010 12:04 pm with 1 comments

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I would suspect that if this had any chance of being any use it would be subjected to proper clinical trials and if effective would be very quickly taken up by the medical profession. If not, I don't think I'd want to place any reliance on it - andecdo...

Susanne A, Fri Dec 10, 2010 7:46 pm
Test Results - Ki-67

Hi All I'd be interested to know if other people have had test results which include this thing called Ki-67 (or Ki67). Ki-67 was stated for the first time after tests had been done on the tumour that was removed, but not from the initial biopsy. The f...

Posted by CheshireCheese on Tue Nov 02, 2010 2:02 pm with 13 comments

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Hi My BC was grade 3 and my Ki-67 result was 25%. Treatment-wise I had the lot. I was really freaked out about it at first until I started googling which I found strangely reassuring (for a change). There are ladies on the american forum with result...

maltomlin, Fri Nov 05, 2010 12:24 am

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