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[flo69]

Hi, I went for NHS breast screening in September, they have a new machine
I screamed out loud with the pain when she crushed my right breast in the machine.
It felt badly hurt and it took a minute or two before I would even consider putting my left breast in because my eyes were flowing tears and I was very shocked at how hard she did it, less than one cm gap between the plates I'm certain and of course there is no escape unless you want to rip off a breast in the machine.

She said she wouldn't squeeze the left one as hard, so I agreed and yes, it wasn't anything like as painful, just an uncomfortable vice like grip.
I left quite shaken up by the whole experience and spent the next week putting ice packs or heat on my right breast, which had a bruise just above the crease under it.

The pain receded over that first week leaving a tender swollen lumpiness in the whole lower part of that breast which felt like mastitis, something I suffered frequently during my breastfeeding years (but I'm 55 now).
The main difference from mastitis was this time there was no red blotchiness on the skin surface and I'm not sure if it was hot.
I drink plenty of water every day btw and cranberry juice sometimes if I remember.

The test found nothing abnormal which is reassuring.

I've been buying new bras because my old ones dig into the sore part and there is still a defined lump below the nipple which was not there before the incident, it's still painful with random shooting pains and I'm left wondering how long does this take to get better?
I know some people get these tests done every few months if they have the faulty gene, but three and a half months later I've not recovered.

I had a cyclic bleed in October and in November but not September or December so I'm waiting until I bleed this month, see if the breast lumpiness comes and goes with my cycle.

I don't put myself through HRT progesterone hell, (why are women still doing that???) I'm on tibolone which the manufacturers say might reduce, increase, or leave unaffected the risk of breast cancer. Isn't that informative of them ?

My personal risk factors for breast cancer are low and I feel well otherwise so I don't feel the need to go to the GP. They might decide to take me off tibolone to protect themselves because they have no clue what the risk factors are. I'd rather stay on tibolone and see some doctor privately about the lump if necessary. Worst case scenario; I'd be taken off tibolone and put to suffer with no help on an endless waiting list.

My first question is this: Is there anything I can do other than the mastitis care routine to help it go down?

I'm already on the gynae waiting list because I have a postmenopausal bleed almost every month. They are booking April 2023 patients this month and I was referred in June that year, I hope to get a call in a few weeks.

So my second question is, what should I ask them or tell them about it while not losing my prescription?

[CLKD]

Mastitis needs to be diagnosed and treated appropriately. 

Sometimes the press-down action is very painful,     although the machine was designed by a woman .  Apparently.

I suggest that you see your GP/Nurse Practitioner 4 an examination. I wouldn't expect to have symptoms after 3 months.  As for waiting over 12 months for a gynae appt., R U sure that your GP has sent a referral?  R U able to take a cancellation, last minute appt., if so ring the Dept and ask for you to be considered.

Cranberry juice: OK to drink but there is no Peer reviewed research about any benefits ;-).

Ice packs on the affected area and paracetamol.  Make an apt with the Surgery to discuss.  Let us know how you get.

[bombsh3ll]

If you have breast symptoms this needs to be evaluated by a doctor without delay, irrespective of recent negative screening.

Screening (for any disease) is for asymptomatic individuals. Subsequent symptoms still need to be checked out.

Please don't take the risk for fear of losing your tibolone - it is unlikely they will stop your prescription pending investigation (tibolone is not associated with an increased risk of breast cancer) and even if they do, it is relatively inexpensive to self fund tibolone if you have to.

There may also be a local private breast clinic to which you can self refer if want to keep it separate from the NHS.

If you have a "postmenopausal bleed" every month and you are 55, that's called a period! Postmenopausal bleeding is not cyclical.

Tibolone is typically only prescribed to those who are postmenopausal, however if it suits you I wouldn't say anything,

You can get a private pelvic ultrasound for around £150 if you wish for peace of mind and then just cancel the NHS one.

That's probably what I'd do as I know how vulnerable it feels when you rely on the NHS for prescriptions that determine whether you have any quality of life or not, that someone could just cut off on a whim without understanding the first thing about your condition or circumstances.

[Taz2]

I agree with bombsh3ll that you need to have a breast examination as soon as possible. I know you had a negative mammogram in September but they don't show up all problems.

Taz x

[LittleClaire]

Yes agreed you need to get this checked out with your GP. Any breast lumps in women age over 30 are automatically referred on the two week wait. I was told this when I had a lump(s) checked in April last year. I felt reassured when told by the nurse usually when it’s painful it’s nothing to worry about. When checked by a doctor at the hospital and given an ultrasound it was due to hormonal changes. He advised me to take Evening Primrose capsules daily and that has 100% alleviated the pain and tenderness although the lumps are still there. Probably what was the start of this awful peri journey I am currently dealing with I just didn’t realise at the time. Let us know how you get on x

[CLKD]

My breast surgeon told us that 'no healthy breast has lumps in it'.  Mum developed breast lumps after eating shellfish, each had to be removed 'in case'.  Let us know how you get on. If U can't get a GP appt then ask for  Nurse Practitioner advice.

[flo69]

Thanks for the replies, it helps me move along my thoughts.

Tibolone is prescription only, so it's not about the cost of a prescription, it's whether I can get one at all while I wait to get the lump checked.
It could be a long wait.

I'll try evening primrose oil, good idea.

The two week wait for suspected cancer is aspirational, dependant on available resources, it's certainly not universal.
Realistically on the NHS I'd be waiting a few months for a first appointment about the lump because I'm not high risk other than age and gender.

Yes, my other referral exists, every few months I phone the booking office to check on it's lack of progress, it's for gynae, that has very long waiting lists, over two years is not at all unusual.
I'm on two other lists as well and my 82 year old dad was recently put on a 7 year waiting list for a hearing aid I know he won't die of old age though, he already has terminal cancer. If you happen to live in a postcode with better services, I'm very happy for you, but this is the NHS after all, it's the original postcode lottery.

I feel I can't risk losing tibolone, I can't face going back to feeling that awful.

I know I shouldn't leave this lump indefinitely either, the pain and lumpiness had almost gone when it came back stronger than ever and scared me.

At some point I'll have to speak up. More anxiety 

I hope my bleed comes soon and that resets everything, makes the lump go away.

[CLKD]

Why would U have to stop using HRT?   

As for your Dad, if he needs to pay for a hearing aid then go for it, they are much better than those provided on the NHS. 

Let us know you get on?

[flo69]

Why would U have to stop using HRT?   

Because that is standard practice. The leaflet says it might increase the risk of breast cancer specifically, so they have no choice but to protect themselves from possible lawsuits.

As for your Dad, if he needs to pay for a hearing aid then go for it, they are much better than those provided on the NHS. 

That is very generous of you, they cost around £8k, but don't wait too long, we don't know how long he has left now.

[CLKD]

That seems a lot flo69  . Remind me, R U in the UK?

As for waiting a long while, at my surgery I can get to see a Nurse Practitioner within 24 hours and a GP either the next day or in 3 weeks depending on  what the symptoms are.

[Ayesha]

That's just cruel to let your dad wait all those years for a hearing aid. We are in London and my husband waited just weeks for his NHS hearing aid which is perfectly fine to wear, not ugly and doesn't work any less efficiently because he didn't pay 8K for it.

[flo69]

Hi Ayesha, London is great, I observed that when a friend there needed the same op as a relative here and got it within 4 months in St Thomas' London, while my relative waited two years both before and after the friend's wait.

Yes CLKD, I'm accessing the NHS from within the UK, it's where I've always lived and worked. My GP told me about having to put 80 year olds on orthopedic waiting lists that are ten years or more long, he said, "You know they won't all make it", he sounded sad, but helpless.

It's a shame the rents are so high in London, that's clearly the place to be if you want the NHS. Having said that, paying rent for a second home somewhere might still be cheaper than having to self fund cancer care. That might be worth a second thread on it's own! How to make it affordable?

I'm seeing a GP this afternoon, I'll update with what they say. It was a nice surprise they were offering face to face appointments for the first time since the pandemic, must be new for 2025, I hope it's a sign of better things to come.

[bombsh3ll]

Do let us know how you get on.

If your GP brings up the tibolone, I would say to them that it is crucial for your quality of life and that you would only consider stopping it if you were actually diagnosed with anything, since the vast majority of breast lumps turn out to be benign.

They may well agree that this is a reasonable position.

Regarding your dad, I would maybe try contacting somewhere like Macmillan to see if there's any help for people terminally I'll to get  NHS hearing aids faster.

[CLKD]

flo69 - 2nd Homes are being taxed above local rates ......... so it certainly wouldn't work out cheaper by the time moving fees, Estate and Solicitors costs are taken into account.

Macmillan certainly used 2 give off a 1-off payment if someone qualifies, it's worth asking. 

Why is your Dad needing to self fund cancer care?  Sadly ageism is necessary in the NHS, depending upon the condition of course.

[Taz2]

I just wanted to say that my 81 year old friend has just bought his hearing aids - he got an appointment for NHS ones within a month of having the free hearing test but prefers something more high tech - and he paid just under £3000 for a pair. He could have got a pretty good one for just over £1000 but liked the look of the more expensive ones. It's not much different to the NHS one in my eyes. They both can work from a phone app so when he's out and about he can adjust the sound or the type of sound i.e. direct conversation, background noise, nature sounds etc. really easily. I'm not sure what type your dad needs if they are going to cost £8,000 though. Other friends (from my local pub) have all got their NHS hearing aids within three months of their hearing test. Has he had his hearing test at one of the opticians? This seems to be the way forward. Could your dad attend a different area or is he too ill to travel. I've done that before - waiting lists vary as you say from postcode to postcode.

I hope you get on well at the docs tomorrow and your lump is less painful now.

Taz x