Not sure what to do! Please help

Hi lisa

Just feel better that are actually going to look.

i am feeling nervous now as well as a little miffed off i had to fight for a check. never the less i am being checked thats the main thing i cant afford to take the risk because i have to little girls so i no i did the right thing because of you…

I never expected to get in that quickly tho. my worry is how many other people have been turned away. that thought is scary i stumbled across this site by accident. so others may not have the support of you lot. and so may just take it as read that everything is ok. and clearly having read yours and a number of others that is not the case

I stumbled across this site by accident also. It was a good find!!
I started in your section, but was unlucky to have to move to the next section down!
Most ladies dont need to though - and hopefully you wont need to also.
I just want to make sure you dont end up back here in a couple of years with something more serious.

Glad you are going back. Let us all know how you get on tomorrow!
Fingers crossed!!!


Will do hunny my appointment is not till 3.30 so i will up date you asap

no well i hope so to but unless i checked i am not going to no. so done the right thing (allthough i do feel a little bad)

I will be back online tommorow lunch. so hopefully talk to you then if your online.

do you mind me asking how old you are ?

morning not afternoon sorry i am at hospital ( my head is like a sieve )

Hi Liz
Bit older than you! Im 42 now. I had my mastectomy the day before my 42nd birthday!
My type of cancer is assoiciated with older women apparently - average age of 62!!

Typical isnt it… in the past, I have even lost a 2 ticket raffle!!

Good luck!

Hoping things went well for you today Liz, x


that’s why i asked i get the distinct impression that because i am 29 next month i am to young and i don’t think they are taking me seriously. its suppose to be an old woman’s diseases. and there just isn,t any evidence of that for the majority of people i come across are 45 or younger which to be honest is no age and i haven’t come across anyone yet that’s over 55. am sure there are as many but not sure how they cab categorize it as an “older woman’s”

thanks ostrich.

i will keep you all updated this afternoon.or in the morning at the latest depending how things pan out.


Hi i have just looked up pagets.

I have really very dry skin and itching around my nipple and breast it itches like mad at times didn’t connect it until now. . which the consultant noticed and told me to moisturise

Did you have this Lisa?

My minds made up now it cant all be a coincidence… am not leaving there till i get some answers

L x

Hi Liz

Dont worry, it may be ok.
My nipple was whitish at the end, a little dry. It wasnt itchy though.
Pagets is sometimes misdiagnosed as excema! I must admit, when I first presented this at the hospital, I thought they would send me away with some cream!

Pagets is very rare though - I am only the third person I have come across who has had it. Only 3% of women with breast cancer get pagets, and the average age is 62! See how lucky I was !!! My breast care nurse said to me, ‘If I had cancer, and I could choose which to have, I would choose pagets!’
All of us are now cancer free though.

I am aware now that I may be worrying you too much (and maybe unnecessarily) - however, if they do the tests and it is another cause, then all is good.

Godd luck this afternoon
I will log on later to see if you have any news.

Lisa X

Hi Liz

Hope you are ok. What did they do?

(Did they say, ‘Stop logging onto that website, its filling your head with rubbish!!’ :wink:
I hope so, I hope that they know what it is, and hope that its something not sinister!!


Hope everything went ok for you yesterday Liz, thinking of you, x

Hi Liz,

hope all went well but as you have been so rightly advised by the other ladies you insist on being thoroughly checked. As you are young and have denser breast tissue mammagrams apparently can be a problem in picking problems up but you can ask for a digital mammagram A digital mammogram is taken in the same way as a regular mammogram – that awkward squashing of your breasts between plates. It uses radiation but less than in a regular mammogram. In a regular or film mammogram the image is transferred onto a film and looks like an X-Ray. The digital prepares an image that is viewed on a computer screen and can be highly magnified over suspect areas. Studies have shown that digital mammograms have been shown to be better for women with dense breasts and also to help better detection of tumors that lie behind the nipple and milk ducts that are hard to spot. They also have the advantage in that they can be easily emailed for 2nd opinions and suspect areas can be blown up and enhanced before printing to film. In the US once you have been diagnosed with a breast cancer you would have digital mammograms not aware this is carried out here and I didn’t need to pursue it as the ordinary mammagram was sufficient for my BC being an old bird. However it maybe worth doing a bit of research on the internet as I believe there are health units that have these machines and I was told you can pay privately (and if my source was correct the cost was less than £50) so certainly worth knowing about. I wish you luck and hope all will be well.


Hi Guys

I am going to scream AAARRRRRRRGGGGGGG !!!.

Its like banging my head against a brick wall. I went yesterday and saw a different consultant. all went well at first they said that having an ultra sound was not an unreasonable request with the symptoms that i have i really thought i were getting some where, so after a really long wait i went for the scan. “ALL well” said the radiographer ( i think that’s the title of the man that did the scan apologies if not ) looks good to me and off he went. i waited another hour and a half to see the consultant. who said well that’s it then everything’s ok. to witch i replied oh good would i be having the discharge sent off for test, i explained that i were worried about paget’s that my nipples were cracked and dry as is my skin surrounding the area to which he replied ( get this i nearly blew a gasket i couldn’t say a word for fear of loosing my temper i could feel my face getting red with anger) " no even if there is visible blood in it doesn’t mean its cancer so you do not have any cancer symptoms go home and let things simmer down" if that wasn’t bad enough he went on to say its prob one of life’s little mystery and could even be hormones. and then in a totally contradictive sentence said you will be getting a letter for 6 weeks times make sure i have that appointment. and that there are three reasons to do surgery ,cancer which i don’t have and quality of life but at my tender age would prefer not to i never got the third one. … so if there’s nothing wrong why do i really need the other appointment and why mention surgery… am completely confused now. and to top it off my husband has been laid off this morning. think i am in your raffle group lisa.

Sorry for ranting. and you havn’t said anything lisa that i wasn’t already thinking you just gave me the insite and strength and i little to knowledge to fight them and get sorted for that i will be eternily grateful ( if only the dtrs were as compasionate and as caring as real people with real lifes.

Oh Liz, what a bad day! I hope your husband finds a new postition soon. There have been a fair few redundancies at our place - and all of the people have moved on to something better… maybe there is something better waiting for him. Its a horrible thing to happen to anyone initially, but something that can be changed. What does your husband do?

As for your appt - I am bloody flabergasted. I dont want to say this, but I will say it - nothing at all showed up on my ultrasound - nothing at all. It was the mammogram and my consultants insistence to find out the cause of the discharge. Putting the mammogram aside, I cant see why they wouldnt analyse the discharge? If they wont give you a mammogram - I will pay for it for you! Did you go on your own?


I no he works in construction and drainage. but there are worst things at sea.

No me either i have asked twice now. I get the impression it is because i am so young. but where does it say you CAN NOT get paget’s or any other type of cancer at 29. and when he said it could even be hormones . how old does he think i am 13 and no nothing about my own body. . i have never heard such rubbish I made a passive remark about my breast looking horrid and lumpy on the ultra sound he said well they are lumpy like i were 10 i just simply meant they look funny . i am going again in 6 weeks so i’ll try again. i will just sob and sob and sob till some one takes some notice of me. yes i went on my own, my husband had an idea they were going to lay off so we tried not to give them any reason to start with him, turns out they laid everyone off anyway think the business is really suffering . so i am a bit in limbo

sorry i had a strop on my last post i had a bit of a moment x x


So sorry you had an awful day yesterday! Some doctors have no idea what its like to be wondering and worried. Imagine if he had a discharge from his testicle - bet he’d bleeding send the discharge off then!

6 weeks is a long time to be having this run around in the back of your mind. Can’t you contact him/BCN or the PALS dept at your hospital and say you are NOT happy and wont be happy until they send the discharge off and do a mammo. Try to stay calm when you do (easier said than done I know) but if you are calm and insistent and refuse to hang up until someone DOES what you need to feel peace of mind you will hopefully get there. Just keep repeating yourself eg “I understand what the doctor thinks but he said x, y and z and no I am no less worried than before and I want this test done. When can you do it?” Don’t ask them if they will just say “when”. If they get difficult ask if its a question of funding - that might make them sit up if they think you think its because they wont pay. The other thing you could try is asking for a second opinion which you are perfectly entitled to do. It might be worth looking up your doctor on the net and see what experience he has in this field (he may still be wet behind the ears!).

Good luck, I know its horrid for you having to fight but unless you think you can put it out of your mind for 6 weeks (which is all through xmas) then fight you must, xx

Hi Liz

I think Ostrich’s advise is good.
If you do end up back at the hospital, take someone with you.

You most certainly can get cancer at 29. I followed the final few months of a young woman who had bc, and died at 34. It broke my heart.

So, please follow up the discharge testing at least.
I will celebrate with you when it comes back ok… and then you will have a good christmas!!!

Lisa X

Hi i know your right. It just makes me really mad, i have been thinking there is a private hospital a few miles away from my house i thought about ringing them and asking how much it cost to get the tests done… (can u just pay for tests and then carry on treatment through the nhs ) and then what ever the results wave them under there noses.

Hi Liz

I am going private for my reconstruction (I go in a week tomorrow)… yippeeeeee (but peeing my pants also).
I went nhs for my bc treatment though - because I had no reason to go private.

You will need to speak to your GP and ask for a private referral. You should then be able to get to see a consultant (of your choice) privately within a couple of days.
If you do need further treatment, you can go back on the nhs. I did consider my mastectomy as a private patient, but it would have been the same consultant as I saw on the nhs, and she managed to fit me in on the nhs faster than privately (she prioritised my case, because it took them so long to diagnose, and because she said I was so young!!)

If going private is the only way to resolve this, then do it. As Bev says, ask for a digital mammo. When you go private, you will find that they have a lot more time for you to discuss your worries, and they will do the tests you ask for.

My bc treatment on the nhs was very good, but the reconstruction side of things here is not so good. Therefore, I am going private, and travelling 220 miles to have it done. For my health, I will do anything - it is the most important thing to me now, even if I cant afford it !! :wink: For Christmas, I am treating myself to a boob job and tummy tuck (DIEP recon) :wink:

Let me know how you get on.
Lisa X