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Any Oncologists who could talk to me? Inoperable Triple Negative Breast Cancer

(11 Posts)
Daxaki Sun 11-Jun-17 00:13:20

I'm feeling devastated. I was recently diagnosed with an ultra fast growing grade 3, triple negative, stage IIIB breast cancer.

I've been on weekly Paclitaxel 80mg/m2 as a first line treatment. There has been adequate response so far.

Recently my Oncologist warned my that my Cancer may be unresectable due to the large original size.

I have some questions / concerns which I was hoping someone might be able to answer:

- I was told I was on the Palliative dose of Paclitaxel. Is this correct? Is this because the Onc thinks the tumour will be unresectable / terminal cancer or could it be anything to do with me having a Paraneoplastic Syndrome (pneumonia type symptoms) resulting in a WHO Performance Status score of 3?

- I believe Paclitaxel is normally used as a second line treatment?? If so, is it possible I've been prescribed it as a first line treatment because I need the good skin penetration abilities of the drug? This is what I was told, but could there be other reasons too?

- I was told I could not "tolerate" FEC-T. Is this because of Paraneoplastic Syndrome/ poor WHO performance score, or is this a quality of life decision to not put me through more suffering with no hope of cure?

- I have been reading promising studies about Carboplatin in triple negative BC. AFAIK Carboplatin is not licensed for breast cancer but some Trusts will give it as a third line therapy for breast cancer or as part of a clinical trial. Is this correct? If so, is there any way I could get it as a combination first line therapy on the NHS outside of a clinical trial?

Any other info or advice gratefully received.

mathsquestions Sun 11-Jun-17 01:00:09

Not my subject but want to wish you the very best

MerryInthechelseahotel Sun 11-Jun-17 01:10:27

So sorry to hear your diagnosis. I'm not able at all to offer anything in the way of wise words except it has been my experience that doctors are truthful and recognise especially if someone is asking questions they deserve answers. Do say to them you need the truth. flowers

Waitingforsherlock Sun 11-Jun-17 01:20:00

Wanted to wish you the best too. Have you thought about seeing another doctor? Have a look at this man's research details.

www.bci.qmul.ac.uk/staff/item/peter-schmid#research-details

user1486071876 Sun 11-Jun-17 09:15:49

I know nothing about this but look on the tamoxifen threads and search for Amberlights posts - they may help you.

I hope you get the information you need and wish you all the best

babyboomersrock Sun 11-Jun-17 11:52:11

This is the thread the last poster mentioned - you'll find support and information there, I'm sure flowers

www.mumsnet.com/Talk/general_health/2930567-Roll-up-roll-up-and-join-the-lacies-for-CANCER-SUPPORT-THREAD-59-anyone-with-cancer-is-welcome-and-those-awaiting-test-results

Twodogsandahooch Sun 11-Jun-17 21:36:35

Have you asked your Oncologist these questions directly? I really don't think that anyone over the Internet is going to be able to give you the answers you need.

I am an oncologist and will say however, that many of our treatment decisions are based on performance status. It is fairly common not to give more intensive chemo regimens to patients of performance status 3 and above, as the chance of serious side effects is much higher. I would expect that you are being given a slightly gentler form of chemo because of your PS. What I can't say whether they are treating you palliatively or still hoping/aiming for cure.

Wishing you all the best

Daxaki Mon 12-Jun-17 14:47:12

Twodogsandahooch

Thank you so much for replying.

Yes, I understand it's very hard to get answers online smile I have been trying to get hold of my Oncologist to ask her, but she has not yet returned my email and currently is not at work. I really hope I hear from her soon! Also, often when I do have appointments I feel as though I am being rushed and not being given time to think and ask questions, which is why I did not ask these things when I last saw her - the whole thing felt too rushed and I was flustered.

That's very interesting to hear that performance status can play such a big part! I will keep that in mind.

I understand why it's difficult for you to comment on the palliative / curative nature of the treatment. Hopefully she will answer that for me, eventually. I--f I don't die of worry first--

Thank you!

Daxaki Mon 12-Jun-17 14:48:30

User & Baby

Thanks, I will have a read of that thread.

Daxaki Mon 12-Jun-17 14:49:39

Maths & Merry

Thank you for the best wishes. It's a hard time.

Daxaki Mon 12-Jun-17 14:51:16

Waiting

Yes, I've been thinking about seeing other doctors. I'm currently trying to get hold of all of my NHS notes to help this along.

I'll investigate the doctor you recommended, thank you!

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