The Dr didn't offer any hope...

Hi Rosie,

As my colleague Lucy said earlier this week, please do phone the helpline here and have a chat with the nurses, they’re here to support you through this. Lines are open again in the morning at 9.00 a.m. - 5.00 p.m. (Mon-Fri 9-5 and Sat 9-2). 0808 800 6000

Take care,
Jo, Facilitator

Thank you Lemongrove. I have to take control of the situation and start shouting louder. Now the dust has settled I can’t believe how the consultant treated me. I can’t worry about her now though. I have to get a second opinion and find a professional who is willing to fight for and with me. If anyone has recommendations for certain hospitals or oncologists in London please do PM me. The battle starts tomorrow! xxx

Hi Rosie

I just really want to echo what has been said already. I can identify with an inconsiderate oncologist (well mine was a registrar) I was given 2 years a year ago! In the past year my BC has been sort of controlled, there has been a little progression, but nothing that the oncologist is particularly worried about. One thing to add is that I am ER+, PR+ and HER2 - like you. My oncologist said that this was good news because there are “more weapons in the armoury!” meaning that there are many available chemos and hormone treatments to try.

I think it was lemongrove who mentioned the hormone status could change. I also had bone mets in my hip/femur (I said ‘had’ because I have had them surgically removed.) I was given a bone biopsy in my thigh before treatment began, to check if my hormone status was the same. This was done as a day case, but under a general anaesthetic. My hormone status was still the same +, but to a lesser degree.

One thing I have learnt in the past year from ladies on here, is that nobody knows how long anybody has got, but encouraging stories and support have led many of us to believe that even if we can’t beat this bloody disease, we will still be here fighting for many years to come. You appear to also be adopting this attitude :0) Good luck in your mission to find a supportive oncologist. Let the battle commence.

Take care Nicola xx

Good for you Rosie!

What hospital are you under at mo? Not allowed to mention oncs by name but there are some good hospitals in London area, maybe have a look at Charring Cross, St Marys, or further but with great reputation, the Marsden.

Just in case you don’t know, there is a Live chat session for secondaries folk on Tuesday evenings 8.30 - 9.30pm.

Good luck with the battle - we’re behind you!

Julie x

Hey …so sorry for the position in which you find yourself chick. Just really wanted, based on my own experience, to echo eerything that Lemogrove said. Get all the facts, read the reseach, ask questions on this forum. Sorry, not sure of your dx but if you are HER2+ then maybe go to the her2support.org (USA based but great for finding out about the latest info). Don’t think twice about changing your onc, your hospital or whatever you need to do. Take charge. Much love x

Lemongrove - Well bloomin’ said! I think the point is that noone should HAVE to do their own research or jump up and down when they’re feeling distraught and vulnerable and ill, but unfortunately I think sometimes we do HAVE to, if we don’t like what we’re hearing. I’m fortunate to have had a Mum who did this and it proved best, so I’ve learnt that the medical community aren’t always right, don’t always present things in the best way, don’t always give full info, not because they are incompetent, it’s just the way it is, they are human too.
Your life and wellbeing isn’t something you can always control, but how it’s dealt with is.
xxxx

Rosie, I have sent you a pm with suggestions for a second opinion.

Hi everyone,

I just wanted to give an update so that anyone who reads this thread realises even if the Dr doesn’t offer any hope there is hope out there!

After great advice on here I got myself a second opinion, I’m now seeing this Professor as well as my original consultant. After various scans it turned out there was cancer in my pelvis, and small spots in my liver and lungs. It sounds scary to read but I really am not scared (for most of the time anyway!)

The Capecitabine has shrunk the tumours and when that stops working there’s another chemo they can use and after that I shall be hunting down a trial…but hopefully that point won’t come round for a long time.

I know it’s a cliche but I really do believe that they really are closer to finding maybe not a cure but definitely something to manage your cancer, so my plan is to fight as hard as possible to stay around for that day.

Strangely enough I was also told my cancer had ‘flipped’ - it was hormone receptive and now it’s Triple Negative. Because of all these experiences and in the hope of helping others by sharing I’ve started up a blog. If you want to follow my story you can read it at…

writtenoff.net/

I’ve only got a couple of entries so far but will be updating it regularly.

Thanks again for all your help ladies, you gave me hope when none was on offer

xx

Rosie that’s fantastic news. I can’t imagine how it must feel to be offered no hope and to leave an appointment not knowing whats going on and feeling written off.

Sounds like you’ve had a really really really tough time and I’m sure all of our hearts go out to you. It’s even MORE unfair when you’re young as well.

You seem happier with having had a 2nd opinion and that’s worth it’s weight in gold.

I hope that they manage all your mets well and that you’ve got a long time ahead of you with this evil disease.

Big Hugs and Kisses for you xxxx

Hi Rosie

You really sound SO positive, that is so good to hear! I am glad your second opinion worked out and you now have faith in your team. I am also due to start capecitabine on Tuesday, so it’s great to hear that it’s working for you. I also had a quick look at you blog WELL DONE, It is very well written. I began a blog in January, then it sort of stalled, perhaps you have inspired me to think about it again!

Take care xx

I,ve just read your blog, it’s really well written and moving.well done you. I hope you can keep it up. Are you still watching the Wright Stuff or have things got better and you can cope with This Morning now?!? Take care,

vickie

Ps. How have you managed not to launch yourself at your doctors and scratch their eyes out?

Its lovely to hear you sounding so positive. I dont know if you know her, but there is a lovely lady on here Dawnhc, who was diagnosed with BC 21 years ago and then a few years later had bone mets. I can’t remember how many years she has had the bone mets, It could be as long as 15 years and she is very active and such a positive lady!

I had the pleasure of meeting Dawn, three years ago at the Royal Marsden where she and my mum (and now me) are being treated, and she looked so well.

Good luck with all sweetie.

xxx

Tors I have now banned myself from morning tv…that still leaves me time for Come Dine With Me in the afternoon though!
And to everyone else, thanks for the comments on the blog, I’ll be updating tomorrow!
Have a lovely weekend xxx

Thanks for the up-date, glad you are feeling more confident in your team and lovely to hear you so positive. I’m sure other women who face results that seem to hold little hope will find some comfort and a glimmer of the posibility of hope from your story.
Keep on blogging! xx

I really don’t know what to say, without sounding like I’m offering platitudes, so I’m just posting some information that might give you hope.
Examples of triumph over the odds:
(1) One lady I know (who has ovarian cancer), was told by her Oncologisr that there was no further treatment possible, and she was sent home to die (her cancer had spread throughout her body, and chemotherapy was no longer having any effect). By pure chance her friend suggested spiritual healing, and although skeptical, she went along. After a year, scans showed no evidence of disease (NED), and 13 years later she is still NED.
(2) A lady I am in contact with in the US was diagnosed with metastatic breast cancer, and despite extensive treatment the cancer spread to her spine, liver and then bone marrow. Eventually, as a last ditch effort, she was referred to take part in a trial at the Anderson Cancer Centre. She underwent an incrediby aggressive form of chemotherapy - a form that was so aggressive that it destroyed bone marrow, and had to be supported by stem cell transplantation. It was also so aggressive that her skin constantly shed, and because she was so weak, her husband had to bathe her four times a day. Anyway, that was 21 years ago - she has since been NED, and has had no recurrence.
You are right to have hope (and hope is about you, not your doctor).

Thanks Lemongrove. I think it’s important to remember that doctors are only human and not psychics. I have had two doctors at my original hospital tell me I have months left and the Professor who I sought the second opinion from told me he has people in a similar situation to me that go on for years.

The truth is nobody knows but I prefer to be under the care of someone who is willing to believe I have years and therefore will go that extra mile to give me the treatment I need - if that makes sense!

I personally believe that a positive mindset does make a difference. How many time have you heard of elderly couples that are together for years and when one dies the other gives up and goes soon after. I know that’s an over-simplification but I think mentally you can play your part in the ‘battle.’

Anyway, enough of my ranting…I’m finding that writing my blog is proving quite cathartic. I’m not yet up to the ‘present’ day but in a few more entries I should be up-to-date. You can follow what I’m up to at writtenoff.net
x