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Original poster

Cancer support thread 91 - don’t borrow tomorrow’s worries

991 replies

LemonDrizzle10 · 27/10/2023 07:39

New thread

OP posts:
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22
SummerCycling · 27/10/2023 15:45

@TwigTheWonderKid

Keeping my fingers tightly crossed for your scan this afternoon. x

SummerCycling · 27/10/2023 15:51

Ah yes, new thread!

Grade 3, stage 3c, Her2+++, hormone negative left-sided breast cancer.

Treatment:

EC chemo 4 cycles
Paclitaxel / Abraxane further cycles stopped early due to side effects
Mastectomy and full lymph node clearance
3 weeks radiotherapy to 5 areas
one year of trastuzumab and pertuzumab

Result:

Very good response to chemo; you're so strong, be proud of yourself; you've been through so much; you've done so well etc (say the doctors)

Total wreck (my assessment) but hopefully gradually less of a wreck as time goes by,

Ongoing treatment:

Zero - it's all just fingers crossed now about recurrence.

isaxx · 27/10/2023 15:59

Welcome to all new joiners (sorry you find yourself here) and hello again to those still ploughing on.

I don't know which thread I belong in anymore. Finished surgery and chemo for triple negative BC 6 weeks ago yet my life continues as a never ending stream of lumps, scans and appointments. Got the results of a core needle biopsy (after unclear cytology) on a lump on my arm. Was relieved to be told it is benign. Some kind of 'fibrin clot' but quite possibly in the lymphatics rather than a vein.

So probably connected to the lymphedema I developed. Having ICG lymphography on 23rd of November to look at the state and flow of the lymphatics in my arm. At least that's a plan.

This biopsy news was, although good in the grand scheme if things, rather blown off course by my discovery before my telephone appointment of a great big marble in my neck - which goes up and down when I swallow - so most likely in my thyroid. I am now having an ultrasound of that on Monday morning. One damn thing after another. I have been followed for thyroud nodules for 4 years, but they hadn't changed much in that time. Now suddenly one of those or a new one way bigger seems to have popped up out of nowhere.

Good luck to everyone else also waiting for results.

As to Google, I'm afraid I'm a compulsive googler. Reading endless research papers and case reports seems to have become a part time job. It can be scary but I find helps me know what questions to ask as well as to understand better the answers. As an academic (totally unrelated field) I can't help but hypothesise and try to reason my way out of my questions through a comprehensive literature review (which of course in the end only hard evidence about my own particular case can answer).

Tilllly · 27/10/2023 16:01

MrsTaytodarling · 27/10/2023 12:14

New here! Hi. Firstly, to everyone on here, my very best wishes to you all. I'm heading off now for my appointment in the breast clinic after seeing my gp last week with a tiny pebble like lump. My sister was diagnosed at my age and died 5 years later so am anxious++. I've nothing of benefit to add, just wanted to say hi

Hugs and welcome
I hope you don't need to stay!

SummerCycling · 27/10/2023 16:03

@isaxx

I'm the same as you about researching it all; I completely understand how you feel about that.

So sorry about the ongoing lumps, scans and appointments. Got my fingers crossed for you.

When did you have your surgery and radio? How long were they before the oedema started?

SierraSapphire · 27/10/2023 16:20

I'm a researcher too @isaxx - with my two types of cancer I think I must have read over 100 journal papers, and it was only doing that that I found out I wasn't being given the most up to date advice by my medical team - the category I'd previously been in was split in two and I was thankfully lower risk, with no chemo or radio recommended. I got this confirmed by the Royal Marsden, but that was when they found the ovarian cancer that my hospital had missed, so I did have chemo in the end. Without the research I wouldn't have found any of this out and might have had pelvic radiotherapy that would have made no difference to my overall survival. Ploughing through the medical terms has been hard work, but I can read the statistics which is generally the key thing. It was like having a second job though.

RedRosesPinkLilies · 27/10/2023 16:35

@TopOfTheCliff - my post is back a bit - yes, I think that’s exactly how I feel about these things (grounding and the like). It’s a bit woo, but it’s not going to do any harm and it feels good to slow down and embrace nature.
X

TwigTheWonderKid · 27/10/2023 16:49

Thanks @SummerCycling Just come out and doing my 10 wait to ensure I don't react to the dye. The scan itself was fine and super-quick but it took 3 different people and lots of failed attempts to get the cannula in. The staff in the chemo unit are way better at it!

ClashCityRocker · 27/10/2023 17:35

Just popping into the thread so I don't lose it - great title, if only I could get better at it!

Stage 3c cervical here, on with The Great Recovery.

nappybrained · 27/10/2023 17:48

Hi all, I'm a grade 2 er, stage 3 B positive ER and PR , neg HR2 BC mixed ductal and lobular.
Doing the Docetaxel on cycle 3 yesterday, been sucking a little ginger today!
And hoping that keeps on doing it's thing as have had to reduce dose, to avoid the 39 plus fevers which Filgrastim may have been responsible for, now not doing them this cycle 🤞
I've been hugely blown away by reading everyone's stories but have been unable to keep up in a timely fashion! Nappy and chemo brain ( nappy several years ago never recovered but oh there were so many nappies)!
Happy Friday to you all.

Unex · 27/10/2023 17:52

@Fantasea
Thank you
I'm struggling to be positive tbh
I've joined the facebook support group and blimey not at all what I expected my early 50's to look like.

Fantasea · 27/10/2023 18:08

@Unex I do understand, this wasn't how I envisaged my 50s either. One thing I would say at the beginning is to prioritise yourself and your feelings - looking back I was still the one supporting and reassuring everyone else.

I would also add to anyone newly diagnosed that you're entitled to free NHS prescriptions. It's just a very simple form from the GP and you just tick 'cancer' and then it's signed. Many people find this out from their team but I didn't and only stumbled upon it on here, having recently having to have 12 items in one week!

Lisdeflores · 27/10/2023 19:16

@Unex I'm another one diagnosed with with Ovarian/fallopian tube cancer stage 4 in 2020.Statistics wrote me off long ago but there are new treatments that have been developed that have extended the life expectancy of women with a O.C diagnosis.
Ovacome have a very informative website and they also run a forum which is full of positive stories from women living with a O.C diagnosis.

Fantasea · 27/10/2023 19:24

@Lisdeflores you're right about the Ovacome forum, I had forgotten that. There are many long term survivors on there. Did you sort out your supply of Niraparib in the end?

nappybrained · 27/10/2023 19:25

@Fantasea re prescriptions if you have receipts may be able to get refunded. Worth a go

Unex · 27/10/2023 19:25

@Lisdeflores
Thanks
I'm not sure what options will be, with the kidney situation as well
The options will be pretty limited I think
@Fantasea apologies indeed no one expects this is their early 50,s (or indeed any age)
I was just expecting well, not this
At least I've almost sorted will out, not that I've got much to leave

Fantasea · 27/10/2023 19:32

nappybrained · 27/10/2023 19:25

@Fantasea re prescriptions if you have receipts may be able to get refunded. Worth a go

I think you're probably right but of course, I hadn't got receipts when I paid for them! Not to worry, my certificate came through really quickly and now I mention it on every thread so others will know.

Lisdeflores · 27/10/2023 19:52

Hi @Fantasea yes eventually pharmacy told me that they have put more 'robust' procedures in place and it shouldn't happen again. The specialist nurses told me that a large part of their day is spent chasing pharmacy for delayed prescriptions.

Fantasea · 27/10/2023 20:02

@Lisdeflores oh that's good news! I had my Covid booster yesterday and my flu jab 4 weeks ago and each time was told by the chemo nurse at my review to not take the Niraparib that day. This makes me a bit nervous but I do now have a couple of spare doses if mine are delayed.

tothelefttotheleft · 27/10/2023 21:16

SummerCycling · 27/10/2023 15:32

From the end of our previous thread:

@tothelefttotheleft

What struck me about the letter you posted on our previous thread, was they way it refers to Her2 as "Herceptin receptor". Herceptin is the brand name for the monoclonal antibody trastuzumab; it isn't a receptor but a targeted immune therapy for Her2+++ disease.

The doctors generally seem to use the term Her2 or sometimes Erbb2 or neu. I've literally never seen or heard of anyone calling the cancer as being Herceptin receptor negative.

As doublec mentioned, it sounds like they might have diagnosed it as Triple Negative?

Sorry, I know this isn't about the mastectomy which was your actual question!

Yes I'm triple negative.

Makemineadecafplease · 27/10/2023 22:37

I hope everyone is having a good enough weekend. Can anyone please link me to the great recovery thread? Thank you.

MrsTaytodarling · 28/10/2023 18:38

Well I had my appointment yesterday, very unsatisfactory. They did mammogram and then said they'll call me back for ultrasound and biopsy another day cause there was no radiologist

TwigTheWonderKid · 28/10/2023 18:42

Oh no, @MrsTaytodarling that's unfortunate, and really hard when you just want to get it all over and done with. Did they give any indication of when it will be?

SummerCycling · 28/10/2023 18:46

TwigTheWonderKid · 27/10/2023 16:49

Thanks @SummerCycling Just come out and doing my 10 wait to ensure I don't react to the dye. The scan itself was fine and super-quick but it took 3 different people and lots of failed attempts to get the cannula in. The staff in the chemo unit are way better at it!

Good the scan was fine in the end. I also find them amazing with needles in the chemo unit! Except once when I had a new nurse who jabbed various places on my inner arm which wasn't ideal!! A different nurse took over and was fine.