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wrong diagnosis

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Re: wrong diagnosis

If it makes you feel any better, I was told I had a cyst. The cyst grew so I went back. They finally decided to biopsy it and it was grade 3 and in my lymph nodes. That was 2009 and I've finished treatment now. I would have had an 83% chance of survival to 10 years if they'd acted when I first found it, now its 50:50!

Julia xx

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Re: wrong diagnosis

Sorry!

ER+ is oestrogen positive (in America they drop the "o"!). So you are ER+ if you are sensitive to oestrogen which means you will have Tamoxifen to prohibit the oestrogen from feeding the cancer cells.

TN is triple negative - ie not oestrogen, progesterone or HER2 positive.

Know what you mean with the being dripfed bad news! When I saw my onc I just asked him to assume it was all bad - give me all the bad news and then it would only be good news from then on... But it doesn't work like that. It's a waiting game... And that's what's SO difficult - you are not in control. We'll all have down times and wobbles - but times when we're happy too (mainly at times you can completely forget about the Big C!).

Actually, talking about the Big C - I just finished the book, "The Big C" by Lisa Lynch. Very good book - mainly funny, sometimes poignant - about her true story, being diagnosed with stage 3 breast cancer at the age of 28. I really felt that I could relate to her as she covered topics such as infertility etc.

Sending a big hug. xxx

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Re: wrong diagnosis

Hi Geanie09

If you go back to the home page of the website then

click on Forums.

At the top left hand corner of the screen you will see "categories".

under that is "Using the discussion forums"

under that is "Glossary- useful words and terms"

that should help to explain some of the things you see written.

All the best xx

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Re: wrong diagnosis

thanks girls, wont have a appointment with oncology untill after my mastectomy. still awaiting results on her2, showing positive for oestrogen sensitivity. dont know what u mean by er+ or tn, all these positive and negative meanings all confuse me! they didnt mention anymore tumours but i didnt ask. i feel like they are only telling me so much at a time as they dont want me to worry. coping ok but everything is happening so fast 😞 everytime i go back to hospital it just gets worse and worse. was only having fibro lump removed on the 29th june and now only 4 weeks later im needed to have my complete boob removed. worried now that next time i go something else is gonna crop up 😞 sorry i sound really depressive. have come to terms with losing my boob and needing treatment but am worried about can it get any worse then it is?

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Re: wrong diagnosis

Just echoing what Manny said. We young 'uns do tend to get the more aggressive cancers but the grading doesn't really matter much now that you've caught it and it's good news that it hasn't spread to your lymph nodes. I was left terrified and shellshocked after my oncologist kept saying the words "aggressive" and "significant tumour". I went on a Young Women's Forum a couple of weeks ago and they also said what Manny said. We do tend to have more aggressive cancers as they are usually detected later as we don't have regular mammograms and our breast tissue is so dense that it is hard to see on scans and also that our bodies are working alot more efficiently which unfortunately means cancer cells can too...! Little b*ggers. However, they can also throw pretty strong chemo at us and we can cope with it better too.

Do you know if you are ER+? HER2+++? Or TN? And do they think that there is more in there? Once they've whipped it all out they will have a much better idea of the size and the treatment plan. Unfortunately they also tend to encourage most of us young 'uns to have chemo even if it hasn't spread to the lymph nodes, but some people are given the choice.

Keep in touch and let us know if you have any questions at all.

xxx

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Re: wrong diagnosis

How awful that this has happened to you in this way - I was diagnosed quickly but had been told it was a galactocele (milk cyst when breast feeding). But they did all the tests and the tumour was identified for what it was.

About the aggressive thing - a lot of us young ladies have 'aggressive' tumours. In many ways that is the nature of breast cancer in young women. We tend to get the Grade 3 tumours (fastest growing), and other markers of aggressive tumours like triple negative or HER positive.

Modern treatment can still be very effective for these more aggressive tumours. Rapidly growing cancer cells are often more responsive to chemotherapy for example.

I am 30 and have a Grade 2/3 IDC (triple negative), 4cm, early lymph node involvement. But I had a great response to neoadjuvant chemotherapy.

Do you now have appointments with oncology etc? I found I started to feel much calmer about things once I had a treatment plan in place and knew that people were going to try and help me.

I'm so so sorry for your diagnosis - we are all here to try and support you in any way we can xxx

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Re: wrong diagnosis

Results back were good and bad 😞 good news is that the cancer hasnt spread to my lymphs, bad news is that its grade 3 metaplastic carcinoma cancer. been booked in for mastectomy for the 1st of august and then they are not sure yet of what treatment to follow. dont really know what to make of it all, they just said my type of cancer is very aggresive. 😞

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Re: wrong diagnosis

Hi Geanie,

I think the docs do try not to make patients worry however I went through the same thing. All positive comments about 'it's probably a cyst' and even the mammogram and needle aspiration was clear. The US though showed a lump which turn out to be DCIS and invasive.

The clinic i went to though were very thorough and worked very quickly - I went from GP referral to final cancer verdict within 3 weeks. As I have a sister with cancer from a young age I did not have to fight for any tests - I was put through the 3 test-process immediatly. Sounds like not all clinics are as efficient.

Wish you all the best for the 20th - be prepared for the worst and best outcomes. Keep up with the post-op exercises, they really help recovery.

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Re: wrong diagnosis

All the best to you geanie hope you have a speedy recovery rest & try not to overdo things, you'll feel alot better after 20th & know whats what
lots of love
Mekala x

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Re: wrong diagnosis

Thanks for your comments everyone and kind words, find out results on the 20th. so not to long to wait. feeling alot better today, was very sore from second operation on monday. Nice to talk to others on here as dont want to worry my family. will keep u all updated 🙂 xxx

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Re: wrong diagnosis

Hi geanie what a terrible experience for you & looking back it was a good job you opted to have it removed I dread to think what would be now if you had (like most do with cysts) just leave them.

I was told this when I 1st went had mammo then scan it was after the scan I was told it was benign on the mammo & that it was just a (moveable) fatty fibro cyst, luckily they did do a needle aspiration just to rule anything out. But was reasured not to worry as both the surgeon & consultant were 99 % sure this was just a fibro cyst it had all the charactoristics of one smooth edges, round, soft moved very easily in all directions. I was told I would be sent a letter in about 3 - 4 weeks. So there was me not a care in the world thinking I was ok then I got a call 3 weeks later asking me to go in the next day for a biopsy as there were some 'Abnormal cells'not cancerous in the aspiration.

I initially felt very cross that a biopsy wasn't done in the 1st place & that I had been 3 week with this THING in me whereas a biopsy I would have been back week later for the results. So when I did get my results 2 days later again I felt bit cross as it was THEN a grade 2 IDC . I questioned about WHY they didn't do a biopsy in the 1st place to be told it was so tiny the aspiration was easier HUH it was no bigger when they did do the biopsy. I still feel a bit cross about this & sometimes beat myself up over it as mine turned out to be a grade 3 IDC triple negative luckily for me it was only 7 mm. So yes I can understand where you are coming from & why you feel angry.

I try my best not to scare anyone but have since come across ladies who have been told by their GP they have fibro cyst as it moves to GET RIGHT BACK & demand to have it confirmed by the breast clinic & also some women still dont go to their GP when they find one that moves as they get put into a false sense of security that it is just a cyst & I am proof that this is NOT always the case. OK the consultant who did my biopsy did stress that in rare cases cancer can appear as Cyst like/ or cancer within a cyst So in a way im grateful they they do test them regardless at the clinics

Mekala

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Re: wrong diagnosis

geanie thats awful for you ,time and time again things are misdiagnosed but to be sent away reassured its ok is dreadul i am sorry you had to join us but you will get loads of support take care xxx

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Re: wrong diagnosis

it seems to happen a lot. I think in the past they did not remove benign lumps, but now they like to get them out of the way because they obscure scans and things. I suspect that in most cases the lump comes out and they test it and thats all that is there, but in some cases they also find the start of cancer, in many cases so small that the would not have found them if they had not operated.

In some cases I dont think its so much they got it wrong, I think the original lump is what they thought, but then they are lucky that the spotted the other cells.

if you were not even offered a biopsy it sounds that they were totally convinced that they had made the correct diagnosis and were as shocked as you when they found it was more.

Sorry at such a young age to find you have cancer, it is a shock to everyone and waiting for results is murder, but honestly once you get those results and get your treatment plan it is all much better and easier to deal with.

In the meantime as questions pop into your mind, or if you feel worried or cross or anything come back on here, everyone cares and tries to help

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Re: wrong diagnosis

Hi geanie09 and welcome to the BCC forums

I am sorry to read about the difficult time you are having, please feel free to call our helpline for further support on 0808 800 6000, the lines are open weekdays 9-5 and Sat 9-2.

BCC provide specialist support for younger women and we have published a resource pack for those newly diagnosed which you may find helpful, you can read about the younger women's services/information and access the publication via these links:

http://www.breastcancercare.org.uk/healthcare-professionals/publications/diagnosed-with-breast-cance...

http://www.breastcancercare.org.uk/forum/younger-women-f37.html

http://www.breastcancercare.org.uk/breast-cancer-breast-health/living-with-breast-cancer/younger-wom...

Take care
Lucy

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Re: wrong diagnosis

Yes I had the same experience. I waited six months for diagnosis as they decided my lump was benign after testing it in various ways.

Unfortunately the tests aren't 100% but I was really glad I opted to have the lump out like you did.

It happened to me in 2003.

Mole

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Re: wrong diagnosis

Hi Geanie,

What a nasty shock. And not even having any support with you as you weren't expecting anything sinister must have been very difficult.

I went on a Young Women's Forum a couple of weeks ago and many of us were misdiagnosed at the start as the doctors just don't think it's cancer in us young 'uns. I heard some awful tales.

My tale is nowhere near as shocking as yours, but I was told explicitly on 3 occassions that it WAS NOT cancer, there was nothing to worry about. I actually had a celebratory meal with friends after my appointment with the breast consultant!! I had 2 different scans with 2 different doctors that showed nothing. I just kept being given different antibiotics. In the end I demanded a biopsy (refused before) just to put my mind at ease as I have a strong family history and it was weighing on my mind so much. One doctor refused. Another agreed. As they had all seemed so certain, when I went for the results I was 99% sure it was all absolutely fine. 10 days later I was having chemo!!

Here's hoping that they got clear margins.

And thank goodness you didn't decide just to leave it on their advice!!!

Let us know what happens with the results.

xxx

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Re: wrong diagnosis

Hi Geanie
I was first diagnosed at 33 and initialy was told it was nothing and I was being silly etc. Finaly had an ultrasound 8 mths later and a biopsy a week after that. Had a grade 1 stage 2 DC with lymph node involvement. That was in 2000 and I have managed for 11 years. I was VERY angry about the whole thing and put in a complaint (which got me nowhere).
Sadly now have a new primary and bone mets but am hopefull that I can keep going for a good while yet.
It is normal to feel angry but try and stay positive. There are lots of us in the same boat and there is lots of support here.
Hope the results are ok.
Claire

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Re: wrong diagnosis

Geanie

Oh, that's just awful. You must be beside yourself with the turn of events.

I can't say I've had this experience - I went to a One Stop Shop and because they looked worried whilst doing the US scan I wouldn't leave until they gave me a rough idea of what they'd found.

I'm so sorry you've been given this bombshell and now everything will be moving in a different direction to what you were expecting. I'm guessing as well that you might be less trusting in your team. Over the time I've been treated I've come to realise that you must question and challenge everything you're uncomfortable about. Although the Internet can be a demon for misinformation it can be great for finding out about your options.

It might help you as well if you write a letter explaining how you were treated and how this made you feel.

Sorry I can't offer anything else. Best of luck x

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wrong diagnosis

Im 29 and just needed somewhere to talk to, and to ask if anyone else has had this experience.
went to gp as found lump, she said it felt like fibro lump(breast mouse). She booked me into our hospital for a double check though. went to hospital about 2 weeks later where had another examination who said the same diagnosis. sent me to have a ultrasound and the nurses told me yes it was fibro lump. doctor gave me the choice to have it removed, because im quite flat chested i decided to have the operation. Had that done about 2 weeks after the diagnosis. Noone ofered me a biopsy thingy before the op, in fact i didnt even relise they could do that. they called me back to see them a week after the operation and i asumed it was to look at my stiches. went on my own and was told actually they got it wrong i do have cancer and it wasnt fibro! have just had another operation now to test the area ect and found this operation so much more painfull. wanting for results now, feel really mad and shocked.