My Onc is giving up on me !!!!!!!!!!!!!!

Hi ladies

Just want to update you on my progress and what my Onc has said to me.

I had my mx in Feb 5 weeks later was told the cancer was back in chest wall and skin mets.
I have cancer in my lymph nodes to my chest.neck and under my collar bone, last week my surgeon gave me a minimum of 6 months to live.
On Friday my onc told me i would have rads for 3 weeks then not offered any more treatment as my cancer is too widely spread and out of control,its uncurable.
She wont offer me any chemo if my organs are getting attacked because my body rejected 3 types of chemo when i still had my breast.

Can they do this???What happens after my 3 weeks of rads??? am i just going to be left to die???
Im so confused and scared…

Shell
xxx

Hi Shelly

I am sorry to read you are going through such a difficult time.

Please call our helpline for further support and a chance to talk through your concerns with someone in confidence on 0808 800 6000, open weekdays 9-5 and Sat 9-2.

Take care
Lucy

Shelley, I am so sorry you are going through such a bad time. If your current Onc cannot offer you any treatment I think that you should seek an urgent referral to the Marsden in London and see if there is any treatment they can offer you. I don’t want to offer any false hope but the least you deserve is a second opinion.

All the best

Fiona

Shelly I just want to echo what Fiona has said - try and get an urgent referral to Marsden or Christies to see what the oncs there have to say.
I am so very sorry you are going through this. xx

Hi Shelly,

I echo what the others have said.Over the years I have been under the Marsden I have met a few women in similar position to yourself where their hospitals said ‘no hope’ and they referred to marsden and have had a few years extra. Have they tested your her2 status properly? Sometimes the status can change with secondaries.

dawnhc
xxx

Shelly - so sorry to hear this latest development agree with the others see if you can get a referal and phone the help line fro advice…

Love Theresa

Shelly = another thought has she said anything about what dose the rads are going to be…? I also have IBC and had my rads in Jan/Feb i had 20 doses and for the first 15 they used a “bolus” a jelly like cover that increased the dose given to my skin layer by 20%… Apparantly that is the way they are treating women with IBC at the Marsden… (i actually went to Newcastle )

Theresa x

Hi Shelly,
really sorry to hear what your onc has said I agree with the others and would urge you to get another opinion. I am not triple negative so don’t have a wealth of information maybe if you feel able to post on secondaries, someone from there will be able to give you advice re treatment options.
Love Debsxxx

Oh shelly, I am only offering you many hugs and can’t add anything other than the other ladies have said. Please do get a second opinion, and yes maybe you could be re-tested for HER2 status.

You don’t need this on top of having recently had the mx, hope you have got plenty of support from friends & family.

Hugs

P xx

Hi Shelly

I am so very sorry that your oncologist has told you this news…and told you in such a dreadful way.

As others have siad I would strongly advise that you seek a second opinion from the Marsden or Christies (which is in Manchester).

Like you I am triple negative but not IBC and my cancer has spread much more slowly than yours.

The main types of chemotherapies offered are generally:

anthracyclines (AC, FEC e-CMF)
taxanes (taxotere and taxol)
capecitibine (xeloda)
Vinorelbine
gemcitibine
platinum based chemotherapies (cisplatin or carboplatin)

The Marsden will also discuss with you whether newer drugs such as avastin might be helpful (though this drug is not approved by NICE).

The Marsden also have some trials coming up for triple negative breast cancer…these are Phase 1 trials (the very fisrt trials after the animal testing stage.)

You can ask your current onoclogist or your GP to make a referral. I think I know what a hard hard time this must be for you…as I said my situation is different (cancer slow growing) but being triple negative I know the particular dilemmas that many of us with this kind of breast cancer face.

thinking of you.

best wishes

Jane

Oh Shelly,

I am so sorry that you’re getting such crappy news and support from your Onc, was this the local one? If so I’d echo going back to Prof Smith. If a nyone can offer help and advice, he can. There are so many different types of chemo, and some only available on trials, but surely there’s something practical they can at least try

I know you must be so scared, I’m scared for you too, and can’t help in the ways I want too.

I have spoken to Cat & Julie, and we all want to come & see you … maybe we could even find a B&B abd stay the night too. Are you well enough for visitors? When are you starting your rads?

I think of you often sweetie, but am just rubbish at putting things into words.

Love as ever, Rebecca xXx

If you want to email me it’s better than facebook, as I rarely check it propely

Hello Shelly,

I hope you see this post.
Please ask for an urgent referral to Dr Steve Johnson at the London Marsden. He is very good and has a special interest in IBC.

I was dx with IBC in 2005 and now see both my local onc and Dr J. If there is something available be it trial or chemo he will be able to tell you.

Best Wishes,
Jackie x

Thank you so much ladies for all your support…

Theresa - I am having a jelly like covering to my skin when i start Rads…
I start my Rads tomorrow (thursday) and are having them for 3 weeks.

JaneRA - Thanks so much for the information on the trials and chemo, i will be asking about these when i see Prof Smith…

I now have an appointment with prof Smith at The Marsden on 1st April…

Jackie - i will mention Dr johnson to Prof smith to see if he can help too…

Rebecca - I would love to meet with you,Cat and Julie. Start my rads tomorrow but we can meet half way if you want to, im still driving but do tend to tire easily. Thinking of you always…

Thanks to all the ladies who have offered me support, advice and (((hugs)))…

Shell
xxxx

Shell - pleased to hear that you have got an appointment at the Marsden - i hope they are able to help and can offer you some more treatment / trials…
Also glad to hear that you are getting the bolus cover - just to warn you i’m not sure if they have told you it means you probably will burn more than usual rads… i ended up burning quite badly - but the special cream that you can use once the rads finish did it’s job and it was amazing how quickly it healed… (You can only use the special cream at the end as it contains silver…)

Theresa

Theresa - do the hospital provide this cream or do you have to buy it?
my onc did warn me i will burn more and it will be painful.

shell
xx

the unit will provide you with all the cream… the first 2 weeks i just used aqueous cream, then they gave me some (agh can’t remember how to spell it…) hydrocortizone cream (? i’m sure someone else will confirm…) then at the end the special cream…
My skin starting splitting at about day 12 so they gave me some special clear gel dressings that you keep in the fridge - they are for relief more than healing… and some dressings at the end to use with the cream…

it sounds weird but if you do get the moist desquamation at the end you treat it by putting on a thick layer of the cream then keeping the dressing on top - it actually heals better when you keep it in a “damp” environment… plus that helps to keep infection out… (i know with normal rad damage people seem to do the opposite and like to try and get air to the area…) i ended up with the moist desquamation under my arm and on my neck… so was going around with this huge dressing on my neck for a few days - must have looked a sight… lol but it really did work magic and healed more quickly than i would have believed… the special cream has to be kept in the fridge and has to be discarded after one week - so don’t be afraid of using a thick layer as you will probably need to get another tube via your gp anyway…

Hi Shell

So pleased you’ve got an appointment.

Prof Smith is in charge of the whole breast cancer dept (I think!) He will be able to give you the latest, best information and advice.

Thinking of you…and hope the appointemnt goes as well as it can. Which three chemos is it you’ve had already?

best wishes

Jane

Thanks Theresa for the tips and information about the creams…

JaneRA - I have had AC chemo,Taxotere and Carboplatin along side Vinorelbine.I have hade 2 cycles of each one but they didnt shrink my tumor it just kept growing.

I had my bone scan today so im hoping to get the results soon…
Start my Rads tomorrow…

Shell
xxxx

Shell - hope all goes well tomorrow and that they get back to you with the results of the bone scan quickly…

Theresa x

Hi Shell,

Hope all goes well with your appt.
Jane is correct in saying Prof Smith is in charge of the breast unit at the Marsden, he will certainly know what’s what with regard to treatments available.

I too had the bolus with my rads but was fortunate not to suffer to badly with burns.

Take good care,
Jackie xx