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15 years on

13 REPLIES 13
Lulu34
Member

Re: 15 years on

Louise your Onc sounds like a waste of space... you can ask to be under a different consultant if your not happy with your treatment.

i cannot understand how they can get your reviewed either by a consultant or an HCA... no offence to HCAs but as a BCN myself i wouldnt even be qualified to review patients never mind getting an HCA to do it.

i wonder if the individual was maybe a new doctor who was perhaps and HCA on the bank during their medical training and just brought their old badge.... but she should have introduced herself to you properly who ever she was.

im glad your MRI was clear that must be very reassuring for you.

its horrible to be faced with BC again after getting through it once already... i had two different primary tumours at age 37 and 40 and it was really tough to start with but now 18 months on from my second diagnosis its not really an issue anymore... im just thankful to have gotten through it twice.

good luck

Lulu x

Guest user
Not applicable

Re: 15 years on

Hi Louise

Really glad to hear your MRI was clear, but what a long wait to find out! Awful service from your onc, can't believe he can be so blase about a life or death scenario.

I am currently on treatment for a recurrence so know it's a rocky road. It's hideous to go through it a second time, although I didn't fall to pieces as much as first time round. Hope you're coping alright with the meds and feeling better after radiation.
xx Jane

louisehuk
Member

Re: 15 years on

Apt tomorrow to see my surgeon, RT all done and skin recovering nicely, still waiting for an apt to see the oncologist though and, funnily enough, i recieved a letter from him last week which started with: I'm not sure if I have let you know, but your MRI scan is clear. Cheers all round, thank you Mr Oncologist. You may detect some sarcasm, this is sadly true.

Anyway, hopefully returning to work next week, p/t, will keep you posted.

Keep positive everyone, though it is hard at times xxxxx

louisehuk
Member

Re: 15 years on

HI Val
Luckily i have no secondaries thus far, so im not entitled to DLA, i think after 3 months i will recieve ESA? So, i shall apply for that in the end of October and see, what happens. Im hoping to return to work evenyually on a part time basis as i think full time is going to be too much with the type of work i do, my employer have made agreeable noises towards this. I do have a px medical exemption card now (£80 later), i discovered this from a leaflet posted in the rt dept, stroke of luck there lol.
Yesterday was a bit of a debacle, makes you wonder though, doesnt it.

Louise

scottishlass
Member

Re: 15 years on

Hello Louise....that is quite a story. If you have been diagnosed with Secondaries you should apply immediately for Disability Living Allowance. Your Breast Care Nurse should be able to point you in the right direction to see if you are entitled to this or any other benefit. it is not means tested but the form is quite daunting but McMillan Nurse or the Citizen's Advice may be able to help you complete the forms. ( Of course the bone-scan may not be showing anything nasty and it could be something else).
I think it is awful that you have been seen by an HCA and not your Consultant. Something similar happened to my OH recently. I thought he was talking to a patient at the fracture clinic as the conversation was going on in the corridor....it was the plaster technician. No badge, no introduction...and he asked my OH " are you THE Achilles tendon?" ...!!!!
No wonder you are exhausted. I hope you get some help but keep in touch on this thread so we can see how you are doing and offer support to you through this difficult time. Val

louisehuk
Member

Re: 15 years on

HCA is a Health Care Assistant.

scottishlass
Member

Re: 15 years on

Can I ask what is an HCA?

louisehuk
Member

Re: 15 years on

HI Karis

The appointment was a scheduled oncologist review, the only one i was scheduled to have during rt. It was my companion who noticed the lady was infact an HCA,i think im still to mentally numb to pick up on things yet. I think it must be common practise, as someone must have authorised it?

Guest user
Not applicable

Re: 15 years on

Hi
So sorry to hear about this experience. I can't comment on the treatment issues as I wouldn't have enough knowledge, but just wanted to say how shocked I was to hear that you were seen by an HCA. Was this just to check your observations before you saw the doctor, or would have this been the sum total, but for you asking questions?? I would ask whether you queried this practice, but as someone who has, I know what the answer would be!! I am constantly surprised by my GP surgery where ladies dressed in civvies, no name badge, no name on the door, who don't introduce themselves and have stethoscopes dangling round their necks turn out not to be doctors but nurses. In fact I now know they are the nurses because the doctors always introduce themselves/have name on door etc etc. Woe betide you if you ask to see a doctor. I was told that it didn't matter whether you saw a doctor or a nurse , it was all the same, so why bother to train all those years as a doctor!! Sorry about the little moan, but I just couldn't think how you felt when you came away from this "consultation". I'm sure somebody has more useful comment about your real issues, but I just wanted to pick up on your comment about who you were scheduled to see, which I think is really worrying.

louisehuk
Member

Re: 15 years on

Just got back from my 11th rad trtmt and Con review, Con was unavailable so, i was reviewed by an HCA, yes, thats correct, an HCA.

I had a list of questions i wanted to ask the Cons, so, after talking to me for a few moments she opted to find a registrar to come and discuss my questions, the said registrar appeared and we had a 'nice' chat, after a few minutes, she asked me how i was getting on with the hormone tablets, was i having any side effects etc, i promptly replied, 'im not on any hormone tablets', she then asked me what tablets i was taking, 'none', i replied, 'are you sure' she asked me, 'very sure' said i. She then read my 'blue' (radiotherapy) notes and said, ' you should be taking Letrozole, i dont understand why your not' so i said just 'oh' ( not knowing what else to say).

So, now i AM on medication for my bc. All this makes me wonder how many other people have been mismanaged and not had any medication at all 😕

louisehuk
Member

Re: 15 years on

Hi Maria, thank you, i think i just needed a moan lol, im normally very positive but was just thinking to myself, twice in 15 years, still not yet 50, and how many more times .....

marial
Member

Re: 15 years on

Dear Louise,
I am always touched by people with reoccurrence, as I have had 2 primaries; one in 2003 and one in 2010. ( you can read my profile) It is so unfair to have to go through it once, and twice is just not on. I am sure you will have plenty of support from the lovely people here, it is a real help to speak to people who understand.
All the very best to you, you are not alone
Maria X

Lucy_BCC
Member

Re: 15 years on

Hi Louise and welcome to the BCC forums

You will no doubt receive lots of valuable support from your fellow users here, in addition our helpline is open weekdays 9-5 and Sat 9-2 and our team can offer you further support, information and a listening ear on 0808 800 6000.

We have published a booklet about breast cancer and benefits and also one called EMPLOY which sets out your rights at work and also one which gives your employers information about your rights which you can read via this link:

http://www.breastcancercare.org.uk/healthcare-professionals/publications/quick-order-list/*/changeTe...

http://www.breastcancercare.org.uk/healthcare-professionals/publications/quick-order-list/*/changeTe...

http://www.breastcancercare.org.uk/healthcare-professionals/publications/quick-order-list/*/changeTe...

I hope you find this helpful.

Take care
Lucy

louisehuk
Member

15 years on

Hi, im new to this forum, i dont think anything like this existed when i was originally diagnosed 15 years ago, so heres my story.

When i eas 34, i had a very small lump, smaller than a grape left and right ribcage/edge of breast, saw a cons who carried out a needle biopsy on the left side and results were clear, so the right side must be too ( i was told) each side, 10 mnths later, the right sided lump was larger, so i was sent to see the cons again (different cons, other had retired) she xrayed, mamogrammed, scan and needle biopsyied the lump and and it came back as malignant, so off to hosp for lumpectomy, which then turned into masectomy as cancer cells were scattered throughout my breast, 22 infected lymph nodes too, reconstruction was carried out at the same time. This was followed up with 6 months of chemo and 15 rad treatments. Reconstruction failed 4 times so an LD was done and successful.

15 years on, reconstruction was failing, so i bravely went to see my cons and asked for it to be redone, we agreed that it could be vastly improved as there was a lot of scar tissue and the muscle was retracting. Guess what? the cons found another tumour which he removed, however, once again, i have cells scattered everywhere. I have had liver, lung and kidney scans etc, they show as being clear, a nuclear bone scan shows 'something' on my spine, so, MRI has been done and waiting for results. Currently having another 15 rads, on my 11th today. Im wondering what happens next, im feeling mentally exhausted, work have been brilliant, but going on SSP soon, no idea what im entitled to benefit wise, and only found out by accident that i can claim exemption from prescriptions. (sorry every one, i just needed to get that all off my chest)