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Diagnosed today

17 REPLIES 17
Emily T
Member

Re: Diagnosed today

That made me chuckle, I just blew had my partner because he dared say I was wrong about something! Then bawled over a Christmas advert becasue the snowman was left in the fridge. I think the seesawing emotions are the worst. I'm waiting for the rain to stop so I can get out for a bit.

EJM60
Member

Re: Diagnosed today

Thank you Michelle.  Feeling better again today - it just seems little inconsequential things set me off - I even had a touch of road rage yesterday for the first time in my life!!! Xx

Mumoftwo
Member

Re: Diagnosed today

Hi Jane, it is natural to be aware of your own mortality when being given a diagnosis like cancer, I was planning my funeral and wondering how my 11 and 14 year old sons would cope without their mum!  But 9 months on from that dreadful day when my life changed forever, having had a lumpectomy, re-excision and a course of radiotherapy, I feel great and cancer no longer fills all my thoughts. Treatments are so successful these days and new treatments are being rolled out all the time (I've read of 3 major breakthroughs in the last 9 months).  In the coming weeks and months you will realise just how strong you really are and will no doubt amaze yourself and those around you. Don't be afraid to have wobbly days when it all gets so overwhelming, I had plenty of those. But now I am looking forward to the future and before long you will do too and this time in your life will be a memory.  It will get easier, I promise. Take care, Michelle xx

EJM60
Member

Re: Diagnosed today

After much deliberation and talking with others who have experienced cancer treatment, we went on spec to visit the nearest private facility with radiotherapy department.  Hospital was pretty standard but the radiotherapy department staff were amazing.  We walked in and I had a major tearful wobble as I think reality finally kicked in that I have cancer - it's a scary word that I had avoided saying.  I was taken to a private room and both the admin staff and radiologist explained everything to me.  I hadn't understood previously that radiotherapy to the left breast can, in the worst case scenario, affect the heart or lungs.  They gave me literature to take home, explained they have a new system involving holding your breathe while the radiotherapy is used to ensure other vital organs are away from the beams etc.  I have also contacted a breast surgeon recommended by several friends, all unconnected, but the minor problem night be that my insurance doesn't cover the whole fees.  I'm going to meet her on Monday and take it from there.  Still waiting for my MRI results though so unfortunately she won't have the full picture.

 

both my grown up children are coming home for the weekend as its my husbands birthday so I need to snap out of my current mood and put a smile back on my face.

 

im fine at work as work in a really busy primary school, but today have attended one of our pupil's father's funeral and I'm very aware of my own mortality.  My dear husband has told me I can't go anywhere as although he can cook he can't make gravy!!

 

cheering up vibes needed today please. 

Jane X 

Dotty79
Member

Re: Diagnosed today

Hi sorry you are going through this I had a mix of private and NHS but I live in rural Cumbria and we don't have local cancer hospitals everything is over and hour and a half away Preston and Liverpool as the closest anyway I had surgery NHS at Liverpool fantastic I then had to have chemo closer to home but I was waiting and waiting for an appointment as waiting 6-8 weeks so I had bupa phoned them up and within 48hours I started chemo the private nurses were fantastic I had expensive anti sickness drugs and one to one I always knew which nurse I would be having it was very reassuring and NO waiting in hot waiting rooms then I had to have radiotherpay at NHS long waits again as no private facility for radiotherpay in my area I've been well looked after both NHS and private but because I suffer panic attacks etc private was good for me because the place was calm and I had that one to one xx that's just me lol 

ann-m
Community Champion

Re: Diagnosed today

Well, I'm another one who was completely happy with nhs care. In respect of radiotherapy, as with all treatments, it is evidence based & shorter treatment schedules at 15 sessions is generally well tolerated & is over sooner, my rads was on the latest equipment & the same team. We're lucky in the uk to have these options.

ann x

Treeze
Member

Re: Diagnosed today

I must have been fortunate then as had both amend from first chemo and injections on nhs
Jas58
Member

Re: Diagnosed today

Sorry NHS 15 sessions I meant to say
Jas58
Member

Re: Diagnosed today

I would agree that it very much depends where you live. Some NHS care is no doubt excellent but regrettably much is nor😟 I did not have a good experience. My original consultant was totally tactless and unsupportive so I chose to go private. My care has been excellent and again I see the same radiologists every time, have access to the most up to date equipment and have 25 sessions of lower dose radiotherapy rather than the 25 sessions the NHS are bound by, which has far more side effects. I consider myself very fortunate but would say definitely go private if radiotherapy or chemo is needed. Unless your hospital can provide worldwide recommended treatment .
Ruby1
Member

Re: Diagnosed today

It was quite a while ago now, but I also had private health care, but I didn't use it.  Do I regret it?  Absolutely not.  Did I receive the same treatment or inferior treatment?  Absolutely NOT.  I got gold star treatment.  Received all the drugs I needed and there was no hassle involved, including neulasta for my white blood count and the best anti sickness drugs.  No expense was spared.  I saw the consultants whenever I needed (they would fit me in there and then and if necessary send me for any scans and I'd get the results usually immediately).  They took every precaution possible.  I couldn't have asked for anything better.  

 

I also had my reconstructions (x 2) done on the NHS.  Again, same treatment, if not better.  The care was amazing.  The consultants were the same ones you could have privately.  I felt so well cared for and looked after.  I felt like I was a priority whilst I was going through all of this.

Nikki49
Member

Re: Diagnosed today

I received all my treatment privately so whilst I do not have an NHS comparison I can only relay what others in my monthly chemo group on here have said.

 

In my opinion:-

 

If it's only surgery I don't think it makes much difference, other than you see your consultant at each appointment rather than one of his lackies, you get your own room and the food is far superior.

 

If you're going to need chemo then 100% go down the private route.

I was given a portacath as standard, I was given the gold star Emend (anti sickness) drug again as standard (you have to have suffered terribly on your 1st dose & beg for it to get it from the NHS), I was also given the neulasta (sorry not sure of the spelling) injection (white blood cell booster), nurse told me you don't get this on the NHS as it's £1k a pop!!  the one given on the NHS if your lucky enough to get it is to be administered once a day for 5 sometimes 7 days where as the super duper private one is just for one day. 

 

I didn't have radiotherapy so can't comment on that.

 

which ever route you choose I wish you all the best.

 

Coralie Stephney
Member

Re: Diagnosed today

Depends on where your hospital is. Guys have been excellent under NHS
EJM60
Member

Re: Diagnosed today

Thank you all for information about your experiences.  Am feeling like I'm on a roller coaster, the constant adrenaline feeling, not sleeping for longer than 2 hours and a complete lack of appetite.  Been to the gps today, feels really real when gp fits you in - normally have to wait for 6 weeks for appointment!  I've been on amitriptyline for years for fibromyalgia, but even with a high dose I'm not sleeping, so dr has added some clonazepam to try to help.  Hate relying on drugs but need to try to rest.  I'm fine at work as not many people know so I'm in a glass bubble - it's only when I get home my thoughts run away with me.  Good to have a place like this where people really understand.  

Sodastream
Member

Re: Diagnosed today

Sorry to hear you've recently been diagnosed. I was diagnosed in 2014 and didn't have private health care but like you had a very good BCN and a very good relationship with my surgeon.  Since my diagnosis two of my friends have been diagnosed.  Both of them had the surgery on the NHS as it was quicker than going private.  They still have access to their surgeons and nurse via the NHS and get their regular check ups.  They both had private healthcare and this is where it came into its own.  One of my friends only need radiotherapy but by going private she met her oncologist, had her planning meeting and was ready to start the following week rather than having to wait weeks on the NHS.  She got a private taxi everyday that picked her up and dropped her off taking some stress out of the day.  The best part was she saw the same staff everyday unlike my experience on the NHS where they had 6 machines and different staff.

my other friend is currently having her chemo privately and sees the same oncologist that I did on the NHS but again she gets a private room for her treatment and is offered the expensive anti sickness drugs and white cell injections without having to ask.  She also sees the oncologist every chemo session.

There is no reason you can't mix NHS and private to tailor your needs and so you get the best of both.

good luck.

Moijan
Member

Re: Diagnosed today

Hi EJM

 

Yes cancer is very scary! Sorry youve had all this worry.you have come to the right place. So many lovely ladies just like yourself.

 

Sounds like dcis, as you say bits are seen in both breasts. Dcis doesnt always progress. i had it in both breasts too, but actually my cancer is lobular, a fatty bc which doesnt show up on mammo ..

 

as for nhs or private...go with what you feel happiest with. You wont get better treatment privately, but you might enjoys more solitude. I find that I see my cons onc most times ai go...you are allowed to ask! I also enjoy the company of the other ladies, but you will know which appeals to you.

 

i am an ex nurse and my friends all said why not go private? But im so glad i didnt!

 

i was diagnosed in 2001 with a huge lump and had a mastectomy. Currently i am on chemo again, but had many cancer free years.

 

i wish you the very best for your treatment,Love and hugs,

 

Moijan💚💙💜

 

Sarah04
Member

Re: Diagnosed today

Hi

Welcome to the forum. I would totally agree with Jo. I also have private health insurance and ended up going down the NHS route. I have had fantastic care also and would do the same again.
My breast care nurse actually said off the record that if she were diagnosed she would 100% go with NHS and she has experience of both.
We still get a pay out for surgery and chemo which like Jo said is a bonus!
Things do get easier once you know what is ahead
Good luck
Sarah x
Jobey68
Member

Re: Diagnosed today

Hiya, I'm sorry you've had to join us but a warm welcome anyway 😊 I also have private Heath insurance but went the NHS route as believe it or not I was dealt with quicker! I was adamant I was going private for my op and spent a couple days on the phone getting all the paper work sorted only to then find I could have my op 2 weeks earlier via the NHS , I don't regret it for a minute, they were brilliant and i couldnt have been any better looked after, an added bonus was being able to make a cash claim for not using my policy and had a nice little pay out!! This is the worst time while you are waiting on a definite treatment plan , things settle down from there on Xx Jo 

 

EJM60
Member

Diagnosed today

I've been avidly reading this forum from afar for the past 10 days. My story so far: 11 th October I had a routine mammogram, 19th October I had a recall letter, 24th October had further mammogram, ultrasound and biopsies - it was at this point I was concerned as biopsies were taken from the lymph nodes as the dr said she could see unusual tissue there.  My husband and I were then taken to a room and given a cup of tea (in a china cup and saucer no less) while the breast care nurse explained the next steps.  Both my husband and I left with the impression that the dr firmly believed there was malignancy present.  As I'm sure you'll all understand I have had an anxious week, not sleeping and.barely able to eat - I likened it to morning sickness, just general nausea all day, only helped by ginger biscuits!  Been back today and taken into a room with my breast care nurse, a consultant and another nurse.  The initial diagnosis is fairly positive, provisionally grade 1 invasive ductal carcinoma, oestrogen positive, her 2 negative, with no cancer cells in the lymph node.  One concern is they could see further areas of what the described as calcifications in both breast which means I have to have an MRI scan, possibly leading to more biopsies.  Initial treatment plan is surgery and sentinel node biopsy, endocrine therapy and most probably radiotherapy.  Chemotherapy will only be given if the cancer is found to be more involved.

 

i have private health insurance, so need to make a decision between nhs or private. I really have mixed feelings about this - I liked my breast care nurse and felt she would be a good support if needed, I also liked the multidisciplinary approach, where all the people dealing with me would communicate with each other.  The private benefit would be that I would see the same consultant at every appointment, and the one private hospital has its own radiotherapy department. It is a little bit further to travel for the daily radiotherapy though.

 

I feel scarily calm at the moment, only getting tearful when speaking to friends and family or when reading the numerous supportive messages from good friends.  One fear I have is how to tell my elderly parents, both in their mid 80s and my Mum having memory loss.

 

Any comments on nhs v private treatment would be much appreciated.  Sorry for the long essay - just needed to get it all out!!