Tamoxigang thread 50 with summer sun, sangria and maybe even some sand

[foofooyeah]

Welcome to thread 50 .... Yes FIFTY.
Lots of us are rising 50 so rather apt!

[RahRahRasputin]

Your boss sounds like an utter knob minty that is no way to talk to someone who has been diagnosed with a serious illness of any kind. Tbh I'd be tempted to make a complaint about it if you can bear it, or at least keep a diary of any incidents in case he carries on.

I will admit that was pretty much my reaction to my diagnosis, to shrug and say I might die tomorrow anyway, but that was my reaction to my diagnosis, not some dick trying to minimise my illness to make his job easier.

Macmillan really are great. I also had a CLIC Sargent support worker, as I was 21 at diagnosis, but they provide more individual support, which wasn't what I needed. The course and the exercise class were a lifeline as my social life was nonexistent with all my friends away at university and whatnot.

They also set up a support group nearby, so I went to the initial meeting to support the initiative, as my GP and I had been bemoaning the lack of one locally. She had been encouraging me to start one, so I was glad that they were doing it instead it wasn't my cup of tea but I think lots of people found it really useful. They now run a variety of talks on cancer-related topics too.

So it's worth looking into what is on offer locally, from Macmillan or anyone really, as there might be something that works for you.

[amberlight]

Minty, interestingly he has just humiliated a disabled person. Cancer counts as an 'instant disability' and by belittling your concerns about something that is part of/caused by a disability, he could lay the firm open to a huge claim for disability humiliation etc. I'd possibly mention that very gently and politely to your boss that you get on with. And to Macmillan. If there is a Union, it's worth a chat. Otherwise, a free half hour with a local solicitor who specialises in disability stuff would give you an idea. I'm not suggesting anyone sues - but it's cheaper for your big boss to agree some more pay with you...rather than you feel you have been humiliated by your immediate boss and constructively dismissed for your disability, and get an average £30k payout. Workplaces need to take this very seriously indeed, and your immediate boss can drop the glib jokes right now.

[RahRahRasputin]

And yes LGFB really are fab :)

[helzapoppin2]

minty, I had my treatment abroad! and, as I said wasn't working, so didn't have to negotiate sick leave, but, as a friend said the day I found out "It ain't tonsillitis!"
I think we (British) tend to think we'll muddle through somehow, but I think right now is the time to take your health very seriously and find out what you are entitled to and go for it.
I held off saying this before because it's so new to you, but remember apart from feeling crap, you also have to cope with the hair loss, a big adjustment. It sounds like your manager doesn't quite appreciate the depth of what you're about to go through, and needs a bit of education.

[MaryAnnSingleton]

amberlight as always writes the most helpful posts.
really am puzzled though- cancer which has spread from breast to distant organs like the liver is stage 4 and incurable as amber states and even if the cancer cells are removed! you are still not clear??it troubles me that you post misleading information like this. Your cancer may well stay well behaved because of this treatment but you have secondary breast cancer.

[Mummywheel]

minty What a dreadful man some people can be so insensitive.

amber I had a small polyp removed 2 years ago and recently found some information which suggested that after having polyps Tamoxifen should not be prescribed. I will of course speak with my Onc about this but wondered if you had come across this?

Mrs I was interested to read that your hot flushes had improved. I'm 5 weeks into my Tamoxifen so feel a little encouraged that things might improve for me too!

ljny I bought the largest MooGoo and a tube which I kept in my bag so that I could apply it immediately after each treatment before I dressed. I finished rads on Monday and my skin did get a little pink near the end but other than that I've not had any problems. Still using the MooGoo twice a day for the next two weeks.

A meet up sounds good - count me in!

[IamtheZombie]

I agree with MAS.

This is my third go round with breast cancer. This time I have liver mets. I will have a CT and MRI after my chemo finishes. If there is any trace of tumours left in my liver I will have them removed surgically. But I will still be a Stage 4 cancer patient. I will not be cured. My ongoing care will be palliative. As amberlight pointed out, this doesn't mean I'm terminal. I hope to be around for a good many years. Unless during those years one of the emerging therapies does provide a cure I will never receive the all clear. Because at the moment there isn't any such thing for Stage 4 cancer.

[amberlight]

Mummywheel, yes, in May there was an update saying that Tamoxifen can sometimes cause some difficulties in some people who have had polyps. One to discuss with the oncologist etc and get them to talk to any other specialists involved, to weigh up the pros and cons. They may decide to scan more regularly, for example.

[reallyreallyworried]

I am really fed up with being made to feel like I have done something wrong!

I have been told that my liver is now clear as is my breast! So as far as I am concerned and my Oncologist I am Cancer free (sorry if that disappoints you) They have told me I require no more treatment, which I am VERY happy about. I didn't share misleading information I shared my good news!

I thank those of you who responded kindly, and wish you well with your continued treatment. I hope you continue to find the help and support you need.

I don't understand why certain people have an issue with me, but quite frankly I can't be bothered with it anymore. IF my Cancer returns in the next few years, then I will deal with it. But right now I am cancer free as far as they can see! I don't see why you feel the constant need to make out that I have mislead anyone in any way! But maybe this is a good time to say, that this is supposed to be a supportive thread, so why would some of you go out of your way to be so cruel. I haven 't done anything to deserve it.

[amberlight]

So you have just had Stage IV cancer in your liver and the team have said that there's no more treatment required? Just to be completely clear about this? Normally metastatic cancer to the liver is assumed to have micrometastases that require continued tamoxifen/combined chemotherapy background, extensive rechecking etc. And the teams don't give any prounouncement on results until the first few sets of checks thereafter with scans etc. Confused.

[kitkat1967]

wow - what a busy thread today - going to work seriously hampers my ability to keep up some days

I'm another who thought that once you got a stage 4 diagnosis it was a case of keeping things at bay (hopefully for a very long time though) rather than any cure being possible.
Interstingly I had stage 1 or 2a and my team say I have been treated - no talk of a cure even though there was no sign of any spread - I've still got my Tamoxifen and check ups every 6 months.

[thegreylady]

I have never heard of anyone with bc being told they are 'all clear' after a year or even after 5 years. Most of us have ongoing treatment eg. tamoxifen etc, regular appts with consultant and annual/ biennial mammos for 10 years post dx.
I honestly believed that 'the all clear' was just part of the advertising campaign for CRUK however I now know that some cancers are indeed pronounced cured after 5 years cancer free.
I hope with all my heart that really is indeed cured and that everyone else with mets can find themselves in that same happy state. God know bc is a bloody, long hard road to travel for all of us. I am coming up to 8 years since my dx of tnbc and have been lucky so far but I will carry a pebble of doubt in my gut until the day I die.

[kitkat1967]

On a different topic has anyone tried venlafaxine for hot flushes?

My consultant suggested it as I am having a bit of a mare (since october so he doesn't think they will settle down now) - about a dozen a day - several bad enough that sweat runs down my face and body and my clothes are soaked. So he said I could ask my GP for this but side-effects are nausea, diziness and drowsiness - and it only improves things for 40 - 60% of people. As much as I'm struggling at the moment in between the flushes I am fine - the thought of nausea etc. fills me with dread so wondered if anyone had given it a go?

[reallyreallyworried]

Seriously, when I said all clear I meant they had removed the affected area of my liver! Which in my option and from my point of view was bloody good news!

Sorry if you feel I was misleading you all. I was not!

I am taking Tamoxifen and will be for the next 5 possibly 10 years, I am also seeing the Oncologist every 3 months at the moment. Next appt in September!

I don't see what I have done to be treated like this. But you have managed to put a complete downer on what I thought was a positive piece of news this week! I'm not stupid and I know the Cancer could return at any point. But I was told yesterday that they had good margins and my liver as far as they could see was clear!

After a shit year, I am more than happy to believe them. Sorry if I have done something wrong, but maybe a few of you need to think before you write, because if this is your idea of being supportive, then clearly I am in the wrong place!

Apologies to those of you that have been kind and supportive, I hope you continue to support each other!

[amberlight]

Thank you for clarifying that when you said you didn't need more treatment, you meant that you did need more treatment. It's important that people reading the thread are aware of what stage 4 means. Good stuff that the team think they have good margins for the liver.

[IamtheZombie]

If you Google "Can stage 4 breast cancer be cured" this is the first non advert result:

ww5.komen.org/BreastCancer/MetastaticBreastCancerIntroduction.html

The first 2 pages of results all say the same thing.

[MaryAnnSingleton]

No need to be so defensive - it just comes over that you've been given the all clear meaning that the cancer has gone for good, that's what we mean by misleading. Maybe think how you present yourself to those newly diagnosed or those perhaps not as familiar with the terms. Of course I'm pleased that your liver is clear at present, and rather resent your dismissal of those of us who have challenged what you write as unsupportive.

[AnonyMust]

I'm totally confused. I had a cancerous tumour removed from my spine and spinal canal in January. I've had what I'd call 'the all clear' from my 'guy' in terms of no signs of it coming back there on recent MRI (6 month check). He was really positive and although i know I'll be checked for ten years, I'm feeling 'out of the woods and relieved' - not that I'll EVER feel the same cancer-innocence again. Life for me is now like pregnancy was having had two miscarriages - if that makes sense.
I have nodules on my lungs. They don't know whether it's cancer or scar tissue (though there's no reasons why I should have scar tissue there, apparently some people do!?! It hasn't grown in last 3 months.
I cannot live without believing I have the all clear because I now, at least, having been stripped away from the chance of living 'innocently' (not in dread and personal awareness) I've been given the all clear to go away and relax best I can, knowing that, for now, I am clear.
I'm so confused and I can understand where Really is coming from.

[IamtheZombie]

AnonyMust, cancer is one disease. It's dozens if not hundreads of diseases. Each one has its own treatment protocols and prognosis. You can't and shouldn't compare your experience with someone who has metastatic breast cancer. Your cancer may well be one where removing the cancer is effective. So in the absence of evidence to the contrary, believe what your 'guy' has told you.

[ljny]

I'm not stupid and I know the Cancer could return at any point. But I was told yesterday that they had good margins and my liver as far as they could see was clear!

That's great news, really. I think you were quite brave to have the liver operation, it can't have been easy after such a shit year.

Celebrate and enjoy.

[IamtheZombie]

Proofread, Zombie, proofread!

"cancer is NOT one disease"

[RahRahRasputin]

really I doubt anyone is disappointed that you don't have any active cancer that is fabulous news. We don't cross paths much and I'm afraid I haven't been able to fully keep up with your cancer "story" as it has had so many twists and turns, but I remember you joining the thread, I think as I was just finishing chemo, and I'm glad you're feeling so much more positive as I know you struggled for quite a while after your initial diagnosis. It's great that you've been able to take the secondary diagnosis in your stride, and that the treatment has been successful.

I think the problem is that the phrase "all clear" is misleading, even if unintentional, and could give false hope of a cure to someone in the early stages of diagnosis. At the moment that's not something any of us can say, whether we have had Stage 1 or 4. Perhaps you could also think before you write and just be careful about terminology that might confuse people.

For what it's worth, the recent posters are some of the ones who have provided me with the most support during and since my treatment. Having got to know them very well over the past year and a half ish, I can assure you that none of them has a cruel bone in their body, so it would not have been their intention to hurt you, simply to verify what has happened so that newer posters don't misunderstand.

It is a shame that you have decided not to return to the thread but I wish you all the best with your future monitoring etc.

kitkat no useful advice but the hot flushes sound horrendous, how frustrating. I may have imagined it but I'm sure someone mentioned different brands of Tamoxifen - would it be possible to try changing brand to see if that helps? Otherwise, personally, I'd try the new drug if there's a chance it could help. Could you schedule it so that you start over a few days where the side effects wouldn't be too troublesome? I am always drowsy for a few days when my gabapentin dose increases, but I find it soon wears off so now I plan for the increases to be over a few days when I have no important plans :)

mrsrhod I have remembered something that I meant to post earlier. I can understand the niggles about not having had chemo, but your team will have really thought it through. They know the intimate details of your case and will have weighed up any possible benefit against the dangers of chemo. They will always err on the side of caution, i.e. giving chemo, so the fact that they haven't means they are completely confident in your treatment plan. As I understand it (apologies, I don't post much so you probably don't know my "story" but I have had bowel cancer so this is not my area of expertise!) Tamoxifen is really effective and a more targeted treatment than chemo :) there are probably stats, but I couldn't quote them!

[ljny]

Hi zombie.

Late night for you? Don't go burning the candle at both ends now!

[RahRahRasputin]

Perhaps I think too much about what I write, as I've missed lots of posts while I was slooooowly typing that response

AnonyMust if your doctor has said all clear then definitely take it. As Zombie says, cancer is not one single disease. Although there are obviously several of us here with other cancers, most posters have breast cancer, which is not something that is ever considered cured/all clear. Whereas some cancers can be removed and that's it :)

First let me be honest: I'm not the best judge, as I am right at the other end of the anxiety spectrum. I have an "extremely high" chance of my cancer returning, according to my oncologist who is a negative Nancy, but it is not something that I worry about and having had cancer does not really affect my life (mentally/emotionally, I do still have various physical issues). But your post sounds very anxious? Please try not to let this worry you as your situation is completely different.

[trice]

Thanks for the good wishes all.

Kitkat - I did a pattern cutting course a couple of years ago. I am not terribly successful at making wearable things as I get over excited and wacky in the classroom and forget I am a jeans and jumper kind of person. I have some nice liberty jersey fabric which will make a comfortable and pretty top with a bit of ruching to hide my uneven boobs.

Lily, - the capcitabene is bloody hard work. Effective though! I have some lovely soothing foot cream from podiacare with mint and lavender which I recommend.

Really, I hope you are recovering well and I wish you health and happiness.