Chicken bald back

[soapdragon]

If anyone on the forum has any experience of LCIS could they please PM me?

 

Thanks!

[gavclojak]

Sorry mine was DCIS....

[bluekarin]

I haven't, but this seems to have some good info

 

http://www.cancerresearchuk.org/about-cancer/type/breast-cancer/about/types/lcis-lobular-carcinoma-in-situ

[soapdragon]

Thanks, blukarin! I have been looking at websites regarding screening.....basically mine was diagnosed 5 years ago and I have been having annual mammograms. However, now I have hit 50 I have been told that I'll have to go into the national screening prog so down to once every three years. Given that my mother had a mastectomy last November I am really not happy about this so am battling for annual checks but not really getting anywhere.

 

I could go private and will have to if the consultant absolutely refuses (she says she cannot over ride the screening prog!!) but, at around £210.00 it will be a bit of a struggle. Hence wondering if anyone else has any experience of this!!!

[The Dogmother]

Sorry to hear that A, I would think they would be able to over-ride the system; I had something not dissimilar done for me, and they did annual screens due to inherited factors and medical history. Good luck to you. x

[Grandmashazzie]

My friends mum had breast cancer and she went yearly to Action Cancer for mammograms.From memory she just gave a donation.

[gavclojak]

I am the same, I'm coming up to 5 years clear and am just 50 so will go on the national screening program, I too am not happy but as no relative had had it I don't really expect them to offer me continued mammograms. I will pay privately though as I think three years is too long between tests.

 

Maybe contact McMillan and see if they know of any programs available for people with family history, it does seem unfair you have to fight for this given what you have been through already but I guess the NHS is struggling

I wish you luck and future good health

[soapdragon]

I wish you luck and future good health

 

Thank you, gavclojak! Likewise, M'dear! I do agree that three years is a very long time when there is a 'history.' Like you, I will probably end up paying but its probably a lot easier arranging the appointment prvately

 

I am waiting for a 'family history' form to arrive and, once I have filled it in, I will take it to the GP who then has to write a referral letter which goes with the form to the oncologist. They will then decide if I qualify for annual mammos. Interestingly, various websites (McMillan, Cancer Research and even NHS themselves) reccomend annual or bi annual mammos so NHS are not even following their own advice

[gavclojak]

I think they are following the NICE (or not so nice) national institute for clinical excellent guidelines

[soapdragon]

I have always thought it odd that a 'body' who regulates treatments and keeps on saying 'NO' should be called N.I.C.E.! Equally, when I had my original breast surgery (after which the LCIS was identified) I had a good giggle over the fact that the British Association of Plastic Surgeons is abbreviated to BAPS

[gavclojak]

BAPS....that made me smile:)

[Blackrocksrock]

Mine was DCIS as well, surgery and radiotherapy and I am this year on year 4 and again will be monitored till year 5 - must ask what the scottish nhs policy is on after that as i would really like to be every year.

[soapdragon]

Mine was DCIS as well, surgery and radiotherapy and I am this year on year 4 and again will be monitored till year 5 - must ask what the scottish nhs policy is on after that as i would really like to be every year.

 

I'd be really interested to know how the Scottish NHS approach this......maybe worth asking 'what next' ? If they say 'no' then you will have time to prepare your case. I have been told that it will be 18 weeks from the date that the form and referal letter from the GP is received by the oncology dept and I havn't even GOT the form yet

[gavclojak]

One thing I will be glad not to have to do is take Tamixifen anymore, just 10 more months of hot flushes

[Blackrocksrock]

One thing I will be glad not to have to do is take Tamixifen anymore, just 10 more months of hot flushes

I did not have to take it - my DCIS was oestrogen receptive and so I could not go on anything, actually i did not wish to go on the trial as you would not have known what you are taking and I react to so many things. I had already gone through the menopause and sailed through the radiotherapy no problems and have done ever since - Fingers crossed!. I hope your flushes settle down - I still get a few now and again at night but not many.

[gavclojak]

Thanks blackrockrocks, my radiotherapy was fine too, a little bit of scorching and a daily four hour delay for four weeks but I count myself very lucky as must you.

Once I have finished taking tamoxifen I have the menopause to look forward to but it could have been worse, at least I can look forward thanks to our wonderful NHS

[soapdragon]

When I 'phoned to ask for the form to fill in the nurse that I spoke to said I would be offered Tamoxifen but I think this may be overkill!

 

Equally, my consultant has said that I should not have HRT as this may very well tip me over into full blown breast cancer but will not sanction annual mammograms

[Blackrocksrock]

When I 'phoned to ask for the form to fill in the nurse that I spoke to said I would be offered Tamoxifen but I think this may be overkill!

 

Equally, my consultant has said that I should not have HRT as this may very well tip me over into full blown breast cancer but will not sanction annual mammograms

 

 

That really is not good - once we have had all that treatment and time etc already gone into that treatment I for one would rather keep on top of it every year.

We in Scotland are lucky that we get free eye testing and as I have slightly high pressure readings I get my eyes tested every year just in case - this should be the case with the mammograms. I will be asking when I go in June.

[Blackrocksrock]

Thanks blackrockrocks, my radiotherapy was fine too, a little bit of scorching and a daily four hour delay for four weeks but I count myself very lucky as must you.

 

I really do count myself as one of the lucky ones - I had to drive 64 miles daily for 3 weeks - I was there by 9am and back at my desk at work by 11am every day. It helped to keep things normal I thought. All the best to you.

[gavclojak]

Gosh we are very alike. I worked mornings and then got the train into London to have my treatment in the afternoons. Like you I wanted to keep things as normal as possible and up until the radiotherapy started I had not told a soul only my partner. I couldn't face telling my kids, mum,dad, mates and work until a few days before the radiotherapy.

 

The kids wanted to take it in turns to accompany me to the hospital too but I wanted to go alone, guess it's a coping mechanism? I found it easier to get in the zone alone!

[Alis girls]

I think it depends on where you live. Macmillan seem to suggest 1-2 yearly mammograms. I live in London and was offered the 3yearly mammograms from my late 40's and understood this to be nationwide. Friends in East Midlands same age (now 53) have only just been called - I nagged them as I think from what I have seen the E Mids is a hotspot for cancer of the breast - my mum had it as did 10 of her friends in various stages. Lincolnshire next county along used to have highest rate - I think its envirnmental. I would write to MP and probably papers too - Daily Mail likes anything which hits out at the NHS. I work in it and am appalled at the fact we put so much into wt loss surgery - when we should be encouraging these people to lose wt with healthy eating not offering them the easy option. Good luck - I know you shouldnt have to fight but sometimes it the only way. I will get off my soap box now.

[soapdragon]

Now that the consultant has washed her hands of me I got the genetic questionnaire from the hospital on Saturday and am trying to fill it in (reliant on mum and dad to remember their parents, aunts, uncles, cousins etc so a bit tortuous!) I have a GP appt tomorrow to discuss the situation and to get her to send the form off with a referral letter.

 

BUT, in this mornings post, I got a letter from the breast screning unit saying that, as I was under consultant care and having regular mammos, they had cancelled my appointment.................aggggghh! Now I can't get hold of them as they are not answering the 'phone!

 

You couldn't make it up!

[Daphne]

This sounds outrageous to me, compounded by a case of left hand/right hand not knowing what each other is doing. You are obviously at risk as you have already demonstrated some worrying symptoms regardless of family history. In fact, the family history must be a red herring. Surely somebody must always be the first in the family to get illness X

 

You have my most frustrated sympathies! If I were you, I would make sure the GP becomes an advocate so you aren't fighting the system on your own. I have had to have regular mammos for the past 4 years (so far, nothing serious) and I know just how awful all the uncertainty is; which is why a mammo and an ultrasound are godsends, giving us the all clear (hopefully) to carry on as per normal. I have nothing but praise for my local GP and NHS clinic, the staff are second to none, but I've never seen the consultant herself, always an underling. I am beginning to wonder if she even exists

 

Hats off to you 3 ladies for your magnificent coping examples

[Grandmashazzie]

Hi Daphne I always take it as reassuring when you see an underling I MO it means you aren't too ill.I always imagine them dividing up the clinic and the boss only sees the sickest.

[PixieDust]

I have thankfully never been in your positions, and hope I never am, but I send you all wonderful, healing hugs for being such strong ladies xx