71712members
376146posts
cancel
Showing results for 
Search instead for 
Did you mean: 

Under 40 but no more ultrasounds?

22 REPLIES 22
Riggers
Member

Re: Under 40 but no more ultrasounds?

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 they only did them every two years now and I'd had one at my first year check up. I feel so angry that they told me this when it's clear I'm entitled to a yearly mammogram in my remaining breast!

Charliechuck
Member

Re: Under 40 but no more ultrasounds?

I agree with Jane, knowing that so many breast cancers have been diagnosed from a U/S rather than a mammogram, I think it is outrageous that they won't be doing U/S under 40. I had a U/S this year at my first annual check up but this is only because I am private through my job. If I wasn't, for peace of mind, I would pay the few hundred quid even if this had to go on my credit card and pay it back monthly.

Amanda xx

tomskimum
Member

Re: Under 40 but no more ultrasounds?

Is it possible that the sentence should have read...'the most COST effective way.........'?

jane72
Member

Re: Under 40 but no more ultrasounds?

Sorry in advance, but this subject gives me absolute rage. It's shocking that anyone would defend a process that's obviously flawed. How does a mammogram show a regional recurrence?

It's incredibly patronising to say that 'mammogram remains the most effective way...' etc when there are so many of us who have personal experience to show that this is a statistical statement, and doesn't take individuals into account whatsoever.

I'm obviously really lucky to have a medical team who can think out of the box. Now I've had a mastectomy, I guess there's no argument!

I think Deb's suggestion to 'find' a symptom that needs checking a very sensible idea.

Good luck to all with your monitoring! xxxx

angielav
Member

Re: Under 40 but no more ultrasounds?

I find this reply very worrying as my cancer wasnt detected on two mammograms in a very short space of time (1 month) but was clearly visible by eye, and was detected on ultrasound. I will therefore not be happy relying on an annual mammogram to detect anything.

Jo_BCC
Member

Re: Under 40 but no more ultrasounds?

Posted on behalf of Breast Cancer Care's nursing team
Jo, Facilitator

Hi Everyone,

It’s completely natural for someone to be concerned about having mammograms for follow-up if their breast cancer wasn’t detected on mammogram but through another imaging technique like ultrasound.

The mammogram remains the most effective way of picking up early changes in the breast whether this is a new change or a recurrence and the benefits in doing so far outweigh the risk.

Current guidance from the National Institute for Health and Clinical Excellence (NICE) say that following treatment for early breast cancer and ductal carcinoma in situ (DCIS) women are offered annual mammography for five years and there is insufficient evidence to support the routine use of ultrasound or MRI in post treatment follow-up.

However some women may have ultrasound or MRI imaging as part of their follow-up and this very much depends on the individual situation. If your breast cancer was picked up on an ultrasound rather than a mammogram, why not discuss with your team the value of using this, alongside your mammogram, as well as any concerns you have about follow-up.

It’s also important to bear in mind that younger women don’t have annual mammograms for the rest of their life, but for five years, until they enter the National Health Service Breast Screening Programme which currently starts at 50. Then it will be done every three years.

The NICE quick reference guide can be seen here: http://guidance.nice.org.uk/CG80/QuickR ... df/English

This link to Cancer Research UK summarises the risk of mammography:
http://www.cancerhelp.org.uk/type/breas ... ing#danger

If you would like to discuss any of this further, you are welcome to phone our Helpline and speak with one of our experienced nurses or specially trained workers. The freephone number is 0808 800 6000 (for Text Relay prefix 18001), Monday to Friday 9am to 5pm and Saturday 9am to 2pm.

Kind regards,
Breast Cancer Care Information Nurse

CzechMate
Member

Re: Under 40 but no more ultrasounds?

I was a false negative on mammogram but when asking about US I was told it is not a screening tool. The thing with making up a lump is that they may not scan the entire area so suggest you pressure them into doing that. The alternative is MRI scan which they should have no objection to. In any case mammography is known to cause cancer whereas US and MRI are not. You've got a lot of years ahead of you so annual mammogram is risky in my opinion in fact my local radiologist thinks it is positively harmful to women under 50!!

waves
Member

Re: Under 40 but no more ultrasounds?

Cheers lolly, thanks . Lise

lolly73
Member

Re: Under 40 but no more ultrasounds?

My private u/s was £250

waves
Member

Re: Under 40 but no more ultrasounds?

Hi , I finished treatment in december. Having my first check up mammogram in a couple of weeks. I am 37 and they are not doing ultrasound. How much is it to go private , ball park figure ? Lise

tors
Member

Re: Under 40 but no more ultrasounds?

mine wouldnt ultrasound me at my mammogram last week, i am 37 and it was my first annual mammogram. They ultrasounded a little section to compare it against the us they did a few weeks ago following me reporting changes in my breast. They just did this to compare the two, and that was at myrequest. Even though i was lying there, with the ultrasound lady, being scanned, they still only did the bit i had been concerned about previously. The problem is that it is so stressful just being in there that you cant put a case forward or explain yourself as you would nortmally as you feel paralysed with fear! But it seems like its normal .

Vickie

Midge
Member

Re: Under 40 but no more ultrasounds?

Hi

My hosp only do an ultrasound if you have a symptom, even if you are under 40. My suggestion is that if you want an ultrasound, create a symptom that needs checking and then say the magic words while you are here could you check..... It was my first surveillance mammo a couple of weeks ago and I had a thrombosis they were also checking out with ultrasound and I said while I am here could you also check another area, which they did and found a tiny cyst. I know it is not ideal, but it is a way to get what you want. Debx

honeybee121
Member

Re: Under 40 but no more ultrasounds?

think i would kick up a fuss im newly dx and it wasnt found in my mammogram only the ultrasound and tbf if i didnt feel a cyst i would never have known anything as i wouldnt have gone to the doctors in the first place

scottishlass
Member

Re: Under 40 but no more ultrasounds?

When I was diagnosed in 1989, 22 years ago, aged 39 my tumour did not show upo in a mammogram but was found by an ultrasound. The tumour by time of diagnosis was 5.5cm and I have to have chemo first before they gave me a mastectomy. If it wasn't for the ultrasound I may not have known at all. All the best for the future. I would ask again if it was me. Love Val

lolly73
Member

Re: Under 40 but no more ultrasounds?

Well mammo result was clear but they still refused to do ultrasound.

A relative paid for me to go private last night. The consultant said that i still have very dense breasts and it is very important that i still have ultrasounds. He said that mammos show 90% of abnormalities and ultrasounds show the other 10%. I had the u/s and it was clear, but now looks like going to have to pay if i want it every year. Will question my onc at next appt.

lolly73
Member

Re: Under 40 but no more ultrasounds?

I have tried making a fuss with my bcn but she says that it doesnt matter that im only 37, what matters is that im post manopausal and therefore wont have dense breasts, so not u/s required.

Josie, do u mind me asking if u r post menopausal?

tors
Member

Re: Under 40 but no more ultrasounds?

Its pretty common practice for bc medics to arrange scans that are basically just to put a patients mind at rest. I would try the anxiety/ psychological approach and make a bit of a nuisance of yourself before paying privately. Xxx

josyemarie
Member

Re: Under 40 but no more ultrasounds?

I was 45 on dx and had both for the 6yrs I was having checkups.Its only this year I'm just having a mammo. Theres not a lot of extra work involved and considering the peace of mind it will give to you surely they'll do one if you let them know how conscerned you are...ask them nicely and if that doesnt work demand one!
Josie x

lolly73
Member

Re: Under 40 but no more ultrasounds?

I have spoken to the helpline and to Macmillan who say that the guidelines do not mentioned ultrasounds for anyone anymore during follow up, just mammos. Also, even though i am 37, because i have had ovaries removed i am menopausal and apparently means that i wouldnt have the dense breasts of someone my age, more like 50 year old breasts! Therefore mammo is good enough?

Dont know whether to pay for private us

jane72
Member

Re: Under 40 but no more ultrasounds?

HI Lolly

blimey, I wouldn't - and didn't - put up with that.

My first cancer didn't show on mammo but showed up on ultrasound. Admittedly I was 32 at the time and hadn't had any children, so my boobs were considerably denser than they are now, age 38 and. more significantly 2 kids later.

I was told that checks would be mammograms only and absolutely refused to accept this. I put it in writing (sent an email to the radiologist and surgeon) stating that it was unacceptable as the cancer hadn't shown on mammogram, and they agreed it was a ridiculous rule and they would scan me as well as xray me annually.

It was at one of these annual ultrasounds that my recurrence showed up. Plus it was in my armpit, quite high, so wouldn't have shown on mammo anyway.

Demand! If you have a good relationship with one of your team of doctors, I'd advise go straight to them. Perhaps an email via their secretary?

Best of luck; peace of mind is worth SO much.

xxx Jane

tors
Member

Re: Under 40 but no more ultrasounds?

I'm 37 and its my first annual check next week and having both us anx mammogram apparently. My sister is 42 znd is now having annual chevks because of me! She had her second annual check on tuesday and she hsd both. I eill ask my friend who is s breast oncologist, but in the meantime you could phone the helpline and/or email a question to the bcc nurses perhaps? I would not be happy with just the mzmmogram and would go mad!

lolly73
Member

Re: Under 40 but no more ultrasounds?

bump

lolly73
Member

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 only done the first year after dx. Then its mammos only. Is this right as i am under 40? Feel like ive not been checked properly.

Anyone else under 40 not having ultrasounds any more?