Lacies, elephants, potato-based snacks... Whatever we are, this is our 57th CANCER SUPPORT THREAD

[WhatWouldLeslieKnopeDo]

Welcome everyone to another cancer support thread. This thread is open to anyone with any sort of cancer. And we have plenty of hands to hold if you're undergoing tests for cancer. We are always pleased to wave people off with an all clear, and there's plenty of room here if the news isn't what you hope for.

So don't be shy! We are a friendly bunch and there's probably someone who has been through something similar. Nothing is off limits here. Scream, shout, swear, stamp your feet...

I'm sorry that anyone needs this thread, but very glad that it's here. Cancer is shit. But it's a little bit less shit when you have people to share it with.

Our previous thread is here

From what I've read, it's routinely given for pre-menopausal women with hormone +ve disease undergoing some (named) chemos.
The research is showing (aside from the side effects like jaw rot) a really good result with preventing bone mets.

I need to get all my research tightened up and be clear on what and why I'm persuing it.
Everything I said yesterday, he was just quoting chapter and verse "Oh yes, the 15th March 2014 study conducted at the Munich Hospital by Betty Boop and Hans Christian Anderson, published in Cancer Weekly, was a study of 113 women and a transvestite called Fred, ........."

It was very much a case of what he knew.

Got to start running around before the cleaners get here. The place looks like I've hosted a rave and it's the morning after !!!!

Hope all the Lacies are feeling up to the day.

I am definitely going to discuss this with my oncologist. This is an interesting article

Oops forgot to say morning lacies. Hope you are all doing well today.

Morning all,

Oncologist appointment was a bit frustrating. I'm not sure he really takes me seriously. But never mind. Chemo next week :)

mrsrhod ewwww to raw fish. Poor mrrhod! The hot flushes sound exhausting

ginger that too how are you?

pepper I hope you had fun at the spa

Jo good luck with your tooth removal!

rocket I hope you are feeling better

No idea about the bisphononates but I hope you all get satisfactory answers from your teams :)

Hello - thanks to everyone who mentioned me - I am feeling a bit brighter today.
My sleep feels like it's normalising even if that does mean I was awake for ages last night.
I've got DH onto working out my new juicer so I've just been presented with different shots based around Bramley Apples and fennel. I KNOW it may all be an extra stress and no more than a feel good placebo but they do taste good! And he does love a toy Xbox usually so it's a good use of time.

Interesting article about bio phosphates - was a bit unnerved to read that my strain of cancer is tricky to treat - and I've had issues with my bone strength last year requiring a bone density scan. Maybe this is something I should mention?
Hoping all of you are coming through a bit brighter today xx

I'm in awe of you all doing your research re bisphononates .
EtTu - your consultant sounds at best a show off and at worst a pain who's not engaging with you .

mrsrhod good idea about asking dentist ,will be interesting to hear reply

rocket hope you're doing better ,you must tell them how poorly you've been .

Leslie sorry to hear that your appt wasn't more fruitful .I know what you mean about not being taken seriously . It can be very hard to get across how ill one has been . I know this is a bit radical but could someone from your family speak to them to add emphasis ??? Though I wonder if the oncologist et al can't bear to fully take on board how bad the treatment can be .

I'm ok thank you for asking , some lasting SE from it all but mostly fine .

I thought you were not going to go ahead until a better plan for dealing with SE was in place .

Waving to everyone I've missed .I'm not good at following the thread .

ginger yes that was my intention. There is a bit of a plan. It's more that he was very patronising about it all so I'm going to go ahead, but if it doesn't work I will go to hospital rather than struggling at home. If this plan doesn't help there are some other options to try apparently. He has previously refused to admit there are any other options so I feel like this is progress :)

rocket enjoy your juices. I hate fennel so I am not jealous at all it's definitely worth asking about the bisphononates

In a previous job role I was an investigator/researcher so will be hitting them with both barrels
I'm going to be asking lots of questions and expecting full answers. Knowledge is strength.

Hello lacies.
bisphonotates is very interesting since it is reported as proven to work and is not costly. I will ask my dr about it too and whether it would be an option for me on my next follow up.
i am hoping they will remove my port in January as suggested during my last follow up, not that it is bothering me, but everytime I look in the mirror and spot the disc shape under my skin I am further reminded of that time. I read it is not uncommon to leave it as a sort of in case we need to go back to chemo precaution. Anybody else still have their port after finishing chemo?

Royal I'm finding that if you don't ask, you don't get, might be an idea to ask for its removal; it can't be nice to keep seeing it day in day out.

May I ask about the procedure and how you found the whole experience ? I'm going in on Tuesday for either PICC or Port.
They've had the draft report about my anaesthetic experience and apparently they did attempt to access the same veins, several times and they are unlikely to have recovered.
The anaesthetist has been returned to supervised practice for three months.
I'm a little concerned about the procedure if I'm honest. It's taken 18 days for the bruising to fade

Rocket, you're having a really bad time. Shout (or squeek it) from the Hills. Remember, it's the baby that cries loudest that gets the milk.
Same goes for Leslie.
Patronising seems to be the default setting for Oncologists it appears

Pictures Chewing with a deer stalker had and a bloody big Bloodhound.

Hope we all have a good day.

Morning all.
I have decided to be a lot more proactive and foot-stampy particularly after reading this article. I wouldn't go as far as to buy chocs etc but think that he definitely does have a point. My ds has SEN and I have always had to shout loud to get him the right support so I need to apply that to myself now I think.

Don't know much about PICC or Ports I'm afraid tutti but hope they take a lot more care with you this week.
Enjoy your day everybody. I am still in bed after a late night awaiting a boiler engineer but at least we have hot water and heating now

Morning - I had my first ever A and E experience last night- not one I wish to repeat. I started to feel a bit head coldy about 10pm so took temp and it was higher than on my risk sheet so called advice line. Quickly got sent an ambulance and off to hospital. There were lots of blood tests, X-ray, pumped with a massive syringe of antibiotics etc but I was fine. I did get a private room though I guess in case of infection. It's five hours I wish I'd spent in bed - but at no point did I feel I was wasting their time which was good I suppose.

Typically it was my first night feeling ok - I'd just spent the evening downstairs, dinner on lap catching up on The Fall!

Tutti I had a port fitted. It was a day surgery and wasn't painful really - it's an odd thing having it under the skin and I feel a bit weird about touching it. They struggled to get my vein for anaesthetic - think I thought of you - but they used the ultrasound to find one after 2 attempts - which worked ok. Maybe ensure that is in place before if possible.

Good morning Lacies.
Rocket seems like a very dramatic night you had there! What was the verdict and have you been dischfged yet?
Tutti I did ask and he said he thought January would be the "right" time. as for ports, like Rocket mine was a day surgery. The first week after the port a cath was put in I was very aware of its presence and although I was in no pain at all at any time, it did feel so ewhat uncomfortable for a while. However, and having said that, it is WAY better than the other option of intravenous drip and having to look for veins every time. Every chemo session the nurse would do her thing while I sat with m I Pad and never felt a thing. I could even go to the loo if I had to and just pulled the whatever they call it machine along . I would greatly recommend it as an easier, less problematic and hassle free option. They do a lot of tests before it is fitted too.
Bestof luck.

hello to every one - i lurk a lot, i find the wealth of information helpful and reassuring

i am 15 mths on from a mastectomy, just about to embark on reconstruction on the 30th of this month, i had a CT scan to check blood flow in my stomach area last week

but ive just had a phone call to say that ct scan has flagged up 'something' in my kidney and im to come in on tuesday to discuss it

she did actually say 'im not saying its cancer but we need to discuss things with you'

anyone else had cancer or problems shift to the kidney after breast cancer ?

I have no experience of this lookingforbaubles, but didn't want you to think you were on your own.
Have you had previous PET/Cat scans at initial diagnosis and treatment ?

Not something I've experienced lookingforbaubles but I have my fingers crossed for you. Did you have chemo? Perhaps it's some sort of kidney damage from that (it's a weird world where kidney damage might be good news!) or just some sort of CT oddity. A few on here over the years have had things show up on CT that turned out to be just slight abnormalities.

After a CT scan a few years ago I was sent for an MRI because the blood flow in my liver was strange. The oncologist wasn't worried, but wanted a more detailed image as a baseline.

Tuesday probably seems a long way off at the moment. Do you have any distractions planned for the weekend?

Tutti my port was put in under local anaesthetic, so it was just an injection in my arm. Personally if you get a choice I'd go for a PICC for short term treatment. I think I posted about it when someone mentioned them a few weeks ago, but happy to repeat if you want (don't want to bore you if you read my previous post). I think PICCs are put in under local too, or maybe even no anaesthetic. A nurse does them in a little room at my chemo unit

rocket sorry to hear about your A&E trip. It's such a drag. But glad that you didn't have to stay in. I hope you're feeling better today

chewing I read the article when it was first published, shortly after my secondary diagnosis. I have some issues with my oncologist. He's a wanker, and he would be whether he was an oncologist or a zookeeper. But the most of the medical staff I've met have been wonderful. I certainly don't feel like they're just trying to keep their jobs or anything like that. To be honest most seem to be restrained by budgets and resources rather than unwillingness to help, so a box of chocolates wouldn't make any difference.

Anyway, what I'm trying to say is I disagree with the article, but it's definitely worth being proactive if you don't feel you're getting the treatment you deserve

thanks tuttifrutti

no other scans - my lymph's were clear

im not sure 3pm on a friday is a good time to phone some up!

seems the MDT was yesterday and the appointment on tues is in the cancer suite - i googled!

ho-hum...bollocks bugger...sigh

Baubles, I believe the expression is buggery bollocks. 3pm on a Friday is a dreadful time to phone someone up with news like that, it smacks of someone trying to clear their desk before the weekend. We all understand you're going to have a pretty awful weekend. I suppose they would want to see you in the cancer suite because that's where they're based so I wouldn't read too much into that. Have you got someone to go with on Tuesday?

I've spoken to my dentist and he said the jury is still out as far as his profession is concerned about bisphosphonates. He has however had a patient with jaw necrosis in these circumstances, after a tooth extraction. The most concerning point for me was that if you have this treatment for any length of time the effects are permanent, it doesn't wear off. Any future invasive dentistry would be a risk and although they can do things to protect you as much as possible if a wound doesn't heal and the bone gets infected you're in trouble. So I guess it's a matter of weighing up the potential risks, isn't it always?

Leslie, I'm sorry your oncologist is a wanker, you seem so intelligent it annoys me to think you're being patronised. I think mine has the potential to be this way too, after my last appt but I'll give him the benefit of the doubt for now.

DH is now on the flight north from Heathrow after about 12 hours on a flight from Tokyo. I have instructions not to present him with fish of any sort for a very long time!!

If you haven't had previous scans, very often they can throw up "abnormalities" that everyone acquires throughout life, and they're called "artefacts". As you've had BC they are probably being uber cautious.

The timing is shit, nice that you have given the weekend to stew and worry.

Evening all.
baubles I'm sorry you have a weekend of worry ahead of you. It is indeed all buggery bollocks!
rocket hope you're feeling better today.
Leslie I have encountered a lot of nice staff during treatment but unfortunately also had more than my fair share of delays and scans being 'forgotten'. My onc is not a wanker though so that's one good thing I guess.

I've always wondered why they don't scan people who have no node involvement. How can they be so sure nothing has escaped from the breast unnoticed?

MrsHodge, the lymph nodes are "gate keepers". They filter everything in the body. If the cancer moves out of the breast it goes to the first node (the sentinel node) and then to other nodes.
If there's no sentinel node or other node involvement it is very unlikely to have gone on tour.

Apparently cancer can also travel through the bloodstream to get to other organs, not just through the lymph system. It does seem strange that they don't do more scans in that case.

Hi, I popped in last week as I was waiting for results.
Results are in and it's not good.
I have breast cancer that has already shown signs in my lymph nodes and a prominent lump on my chest suggesting it's spread there too.
Not only am I petrified but I'm in agony.
Had another biopsy today and booked for pet scan Tuesday and then see my cancer dr for results Thursday.
I'm scared, upset and angry.
It already sounds like I'm a goner.
I'm only 39. I have 3 little children and a shit full time job. Loads of debt and just don't need this in my life.
Will someone wave a magic wand and make this go away please

Oh useristired so sorry to hear this . It is such a shock to be told that you have cancer.
I wish I did have a magic wand that would kill the bastard for you. Don't go saying you're a 'goner', there can be so many treatment options these days.