Essex Girls!

Hi,
Lindsyloo I don’t know what you were expecting so not really sure whether it was a mix of bad and better news for you. I think primaries is thankful but not that you have to go through all this agin - so unfair. I think Nev will give you something, maybe TAC unless you had that last time. Just wanted to wish you luck and let us know how you get on.
Tracey you stood me up again!! Definitely detention for you lol Look forward to catching up
Lily x

I am new to this site / forum, but need some Essex specific advice please…
I am 41 years old, found a lump about 4 weeks ago, and had mammogram, ultrasound and core biopsy on Monday at the Chelmsford Breast Clinic.
The consultants said that it is highly likely that it is breast cancer… the only thing I can remember was the words “very large” and “very concerned”…
In any event I go back on Monday morning for the results etc.
This last three weeks have been lived in a fog, this past 5 days have been a combination of terror and tears. Only realised today that I have health insurance.
Sorry… my question is, would it be better for me to be treated under the NHS or through my private health insurance? I have read so many postive things about Chelmsford NHS and dont want to go private and perhaps miss out on the best care.
Please help.

hi linda
sorry you’ve been diagnosed …again…i’m in a similar situataion - but in other breast from last time (4yrs ago).
this time also had 3 grade 3 tumours (new primaries) plus pos sentinel node. i’m starting chemo next week 4th feb (dx sept, mx oct, ax clearance dec - appts all v slow!)last time i had 4 ac & 4 taxotere thsi time 6 liposomal doxorubicin - ‘myocet’ (modified ac) nev onc - same team as before
hope you don’t have to wait too long to find out your plan of action!!
jk

Hi,
especially to the new ladies and really feeling for you as the shock in the early days just hangs over you all the time. I was dx Feb 2008 and had a lumpectomy, 8 months chemo and 15 rads finishing 31 Dec 2008 and now on one tablet a day and regular checks. Chelmsford is a centre of excellence and we get a lot of money spent on Bc, routine scans for everyone and pretty good care I would say.
Oscarbailey wish you had called in sooner and I would have nudged you to private care to get a diagnosis at least. I went to Springfield and paid. I phoned, went the next day and they told me the same evening. Then they transferred me back to NHS the next working day. By the time my NHS appointment came through I had a biopsy,all the tests, the crap news and had a date for my operation. Not sure why private can tell you there and then and NHS can’t as the consultant tested it. Regarding NHS or private I would say go private as there are some drugs not available to the rest of us.He will and does move people back to the NHS if that works better for them at a future date. You see the same docs whichever you choose but if they are paying all the bills then go for it. Why not ask when you go back.Best of luck and if you would like to meet up with us then please do come along. There is something quite calming and reassuring about meeting other people who know exactly how you feel and we are a group with quite diverse ages and treatments so there is usually someone who has had the same as you. Big hugs for MOnday and it sounds like they are fairly certain so get back to us when you can if you need more help. They told me mine was highly suspicious. I found out later that when it shows up black on the ultra sound that is bad news and I laid there and said ‘is the black part the lump!’. I still can’t really get my head around having cancer but the terror does ease as you get so flipping busy with the appointments. If it is bad news, I promise you can do this, and we would all be glad to help if we can.Chelmsford has a really high survival rate so I just follow orders and do whatever they suggest. Good luck and big hugs x.
kath12 sorry to hear you are facing a second go and wanted to wish you luck next week and that the new chemo goes as well as it can. Please come and see us if you wish too, we are all at various stages of treatment and dx.
Everyone else see you guys soon
Lily x x

Hi again

private vs NHS, well to be honest there are pros and cons to both, I am a nurse and work for the NHS but I have used private health insurance and got all my 1st treatment and this privately in Brentwood, (Hartswood and Nuffield)

Pros NHS
Excellent breast care nurses who provide emotional support and prostethis measuremnts
Getting to know others going thrugh the same or similar problems

Cons NHS
Not seeing the same medical personnel all the time.
Not having own room during procuedures and admissions including chemo.
Not automatically being given nulasta and other drugs which are not always available on the NHS
If the is a bed crisis (which is common) op could be delayed if no bed available (although this is minimised as it is classed as urgent surgery)

Pros Private
Only ever see consultant
see the same chemo nurses all the time
private room during admissions and chemo
better food
clean environment
better access to drugs
Quicker results

Cons private
BCN service is lacking, (I did use the NHS nurses)
If things go wrong (rare but possible) you may need transferring to NHS hospital because the medical support in the NHS is better out of hours

I am personally pleased I went private, I cannot fault any of the care I have had and given the option I would always go private.
I do not say this lightly, before my husband got health insurance and I needed the services I was an NHS snob and did not rate private care at all.

Hope this helps

Linda

Hi Kath

its S***T going thrugh it a 2nd time, I see my onc (Simms) on wednesay so will get the plan then, my gut is and always has been that I will need chemo again, YUK.

I hope your treatment goes well I will be thinking of you, keep in touch
Linda

Many thanks for the advice…
I guess when I go on Monday, I will ask that they transfer me via the health insurance.
I sort of knew myself when I saw the mammogram, and then the ultrasound… like you, a very large black shape on the screen - when the consultant started measuting it from various angles I knew.
Trying to prepare for the worst, critical illness, health insurance, child care etc, but really hoping for the best…
Regardless, after having read every post on this site I am more determined than I have even been in my life.
Marguerite

hi
thanks for replies

  • yes would love to meet you - altho can’t do this weds but will keep in touch for news of meets!
    & over the hill isn’t all soo bad!been over last 8 years!
    linda agree it is even more s**t 2nd time!
    marguerite thinking of you tomorrow (monday)
    love jk

Hi,
good luck to all of you and try to keep smiling if you can, not always easy but there are still tons of lovely days ahead too. I found not looking too far ahead and just concentrating on the very next thing I had to do helped me or it can get overwhelming. Keep us posted on your treatment plans and we will help if we can or cheer you on through. Meet us any time you like.
Everyone else see you next week I hope
Lily x

Not great news… but could be so much worse!
Invasive ductal grade 2, ER+, PR+, Her2 neg, 25mm
Strange emotions, absolute relief that it was not worse - feel as if I have been given a second chance?

Hi Oscar
I am so pleased for you
as you say could have been worse, so happy that its not as bad as expected, have you been given a treatment plan yet?
As Lily says one step at a time.

Linda

Thanks Linda… and everyone on these forums, without you I dont think that I would have been able to put my diagnosis into perspective.
Treatment plan… so far, I meet with surgeon and team on Friday and schedule other tests bone scans, CT scan etc.
Indication is a therapeutic mammoplasty, radiotherapy…
Given my age (41) they may also consider chemo ‘to blast it’.
Therapeutic mammoplasty because I have large breasts (38E)… He anticipates loosing 1/3 and will ’ reconstruct’ the other at the same time (also remove lymph nodes at same time). Will be scheduled on Friday, but think the week after next.
Marguerite

hi oscar
good you feeling you have a 2nd chance & could have been worse!
sometimes hard to feel in control but getting on with planning & treatment is the way forward
and yes one step at a time
& keep talking/posting!
love jk x

Hi Margurite

Thats good, I personally think if they offer chemo take its, it is an insurance against those pesky cells going walkabouts thrugh the rest of the body.
Its not pleasent but it is as the old cliche goes “doable” and goes quickly.
Where are you having your treatment, have you decided yet?
I see my Onc on Wed and find out if I need chemo for a 2nd time, my guess is I will so I am preparing myself for that

Linda
xx

Thanks Ladies for your posts / advice…
Agree with you Linda, if they offer chemo - no question that I will take it.
After the input re private V NHS… I have decided to go private. My primary driver was speed and reduced waiting times at appointments ( I will need to continue working full time, so exact appointment times are important)
Katie - I expect that I will be posting in here for a long time… you all have been invaluable to me and I would hope to be able to contibute as you have at some point.
Marguerite

Hi,
Marguerite I will eat my hat if the prof doesn’t say have chemo! He gives it to virtually everyone under 50. My dx is almost identical to yours and I had chemo and 15 rads and now on tamoxifen. However things change all the time with treatments and how hormone positive you are, so see what he says. I had 10 months off work as I am a teacher and too many germs when your immune system goes down. Depends what you do really as bit tricky working in a school with no hair and no bra ha ha! People in offices seem to manage much better - all very personal. Also depends where you work as you can’t drive after the ops for a while, getting pyjamas on is tricky enough for a little while! Make sure you buy button right down the front ones before you go in. Will you be going to Springfield? He has really high survival stats and you get the same onc if you are private or NHS, which is nice for those of us without private cover. I don’t know anything about the other private ones but Linda seems happy with hers too. Keep us posted everyone and we will probably bump into you some time. Linda good luck on Wednesday for a good plan to get you sorted, for good this time i hope. Kath where are you treatment wise at the moment? Hope things go really well for all of you. Other cyber pals see you soon
Lily x

Hi everyone,
I havnt been on for a long time. Just thought I would add my view on NHS V Private. I was DX Dec2007 spent all of 2008 having treatment 6x chemo, WLE then Mastectomy with DIEP Recon and then 25 Rads. Went for Mamo at Lady Macadden in Southend as too young to be tested on NHS after my sis DX in Oct2007. I then took myself off to Springfield, it was great, clinic, mamo/ultrasound and biopsy and diagnosis same night. I have had all my treatment at Springfield (under Prof D) except Rads still had to go to Colchester daily. I would highly recommend them, my sister and I had similar treatment hers NHS mine private and I got lots more meds for sickness ect and more importantly time! Even free parking makes a whole lot of difference!
I now have hair which means I now look like me. And feel good. I have met a couple of you ladies at Helen Rollason Centre but I would love to come and meet you all again and I have been thinking of doing the race for life this year too.
Lily Rose I think I met you last year, about the Recon with Mr S I am still having physio on arm /breast to help with discomfort & stiffness in arm/ breast, not helping much I am beginning to think it is ones of those things I am going to have to live with, they say it is the disease that just keeps giving!
Hope I can meet up with you Esseex Girls soon.

Hi everyone, glad to hear some new voices, not that theres anything wrong with the bad ones!. Sorry haven’t been on here for a while but been feeling very tired and an additional health concern which I am very concerned about and preoccupied with. I feel I may have ovarian as having difficullties but see the GP and nurse next week so hopefully they will be able to put my mind and rest and say the bleeding etc is down to something not so sinister. Looking forward to seeing those who can m,ake it tomorrow to help Lily celebrate her birthday. take care everyone who is starting their treatment and if I can can do it you can too!!!

Love Sharon2 xxxxxxxxxxxxx

I would much rather meet you all, but I have a date with Dr Eliot Sims at the hospital to see if he wants to poison me again lol

hope you have a great day
Linda
xxxxxxxxxxx

Hi,
thanks nd we will have lots more catch ups. B and I will be there at 6.15 but some not there till 6.45 so will gossip till you get there. Sharon2 hugs matey, sure it will be to do with treatments. Miller as usual. Good luck Linda.
Hugs
Lily x