All the fives... Tamoxigang cancer support thread 55

[WhatWouldLeslieKnopeDo]

Welcome newbies and oldies to our 55th thread!

Our previous thread is here.

If you have any sort of cancer please feel free to join us. We are always happy to offer a hand to hold if you're waiting for test results too.

There are no stupid questions here, and there will usually be someone who can answer, or point you in the right direction.

The tattoos are really small, they look like someone has dotted a pen on the skin (in dark blue). pepper, they aren't really related to where the cancer is, more to do with lining up the machine in the same place each time. I think most people have them in roughly the same place. I have 3. one in the middle of the chest just above my cleavage, one in the middle below my breasts between the ribs and one on my side just about where my bra sits.

chewing and Jo, welcome and sorry you have to endure more waiting, hopefully iy will be Ok, but if not we are all here to listen.

Leslie, laser removal could be an option I suppose, dinster, concealer might work, but I'm hoping they will fade too. Hope you get the hair under control . I can't wait to have bouffy hair, I had mine coloured as it's so grey, but it came out quite red, even though I chose a light brown and it looks worse than before, so sticking with the wig for now. How much hair did everyone have before you went 'naked'?

Jo I know it's difficult, but try not to get ahead of yourself. Just focus on today. If it's cancer then you will find a way to cope with all the things that seem so impossible right now.

None of us on this thread is remarkable. We are just ordinary women with some cells that happened to go a bit haywire. We have reacted in all different ways, and at different points during our "journeys". We are all getting through this however we can. Just because we have no choice. If you find yourself in this gang for the long haul then you too will cope.

Do your children know you are having the tests? If you scroll up a bit, a couple of others are hiding this from children taking exams, so you may find company if you've chosen not to tell your girls until after exams/trials (well done to your DD2!).

Hopefully someone more knowledgeable will be along in the morning, but I think there was discussion of lumps getting bigger after the biopsy. it might've been in the previous thread. My advice would be to stop poking it. You might make it red or hurt, then starting worrying that it's red and hurts and poke it more, and so on... Also it's really hard to tell how big lumps are under the skin, and to remember how big it was before. It's all too subjective, especially when you are anxious.

I do understand though. I have an enlarged lymph node on my collar bone and have to resist the temptation to poke it!

Fresta I hope your hair starts to behave itself soon

Waving to all.
Hi Jo. As wise people have said, this is a very eek time, the waiting bit. Arguably the worst bit of all, because brains do a full 'what if...!'
If it helps, 17 years ago science knew almost nothing about breast cancer. It was 'medieval' in terms of treatment. Nearly everything we know about breast cancer has happened in the last few years. And in the last couple of years, nearly all the treatments have changed to better ones.
Breast cancer is also generally very slow growing. It can take years for a lump to grow big enough to be felt. So anything mega-fast is very unlikely to be breast cancer. Biopsies often make the body react by producing lumps and pain, so that's not the cancer, if so.
If it is breast cancer, and they spot it early and treat it with the modern stuff, it's very very difficult to die from it, these days. They have so many effective treatments. Because you'd already had the recent mammogram, etc, you can be confident that this wasn't something growing and being rudely behaved for years: Those are the ones that are the tricky ones for teams to control afterwards.
Hoping you get good results. Meantime, ask people anything. And maybe focus on giving yourself a treat to look forward to every day, even if it's only something small. Worked for me during my recent weeks and weeks of waiting for biopsy results. May help.

Hi Jo and welcome, although I hope you won't be here too long. Oh the pain of having to go through BC testing when you have children aged 16-18. Just when you want to be offering them your total support you have this huge personal anxiety going on, very conflicting. I had had a clear mammogram six months before my diagnosis so my cancer was very new and was treated quickly with minimal trouble really.

Fresta, sorry you've been shocked by the tattoos, they are rather obvious. I had a student doing mine and they are definitely not discreet, however I don't notice them particularly and two years on exactly I think they're fading a little. I did wonder about removal but heard that if you need further rads, heaven forbid, it's useful if they can see your previous marks.

Lily I'm so pleased to hear you are up to further treatment and you have some lovely plans. I hope your Cumbrian holiday comes with good weather.

Chewing, how are you doing, the waiting around is dreadful I know.

Leslie, you're being an amazing support again to everyone. How are you doing? You mentioned a holiday before further treatment - any plans yet?

I'm not expecting to hear about my hysteroscopy results until at least next week, the MTD meeting is on Friday. I'm trying not to think about it, coming off the tamoxifen is not a great option, I guess it depends how serious this random bleeding is in terms of acceptable side effects.

We've just had two lovely days in Whitby and Robin Hoods Bay. Amazing weather and I even managed a paddle in the North Sea, brave at any time. Hobbling a bit today, it's very hilly. Not sure if that's age or the tamoxifen making me stiffen up.

Hello to everyone else, sorry I haven't mentioned you all but I'm taking it all in. Enjoy the sunshine.

Amber, thank you as always for breaking down the science from the big oncology conference for us. It's all good to here, I just hope the govt allows these drugs to reach us.

Hear not here, goodness me!

Good morning all.
For those waiting for results, it is a very hatd time and my thoughts are with you.
I jus wanted to share this news I just read about and which complements what amber has said :
www.bbc.com/news/health-36459682

Am in a hurry, so aplohies for not mentioning anybody.
Have a good day.

Thank you for your kind words and advice amber I am trying hard to stay logical this morning and focusing on the fact that nothing was spotted in the mammogram 6 months ago (and ignoring the fact I read that up to 20% of tumors can be missed on mammogram - damn you Google!) and if it is something then it has been caught early (pretty sure the consultant said something about early cancer when I pushed him for his professional opinion about what it could be) however my brain is playing dirty tricks on me today! Your advice about a small treat each day is a good one, thank you

chewing I hope today goes well and you get postive news very soon.

Huge thanks also to royalmama and mrsrhodgilbert for your support. It definitely helps to get my feelings 'out there'

Step away from Google!
Stick to MacMillan, Breast Cancer Care or Cancer Research

royal I hadn't spotted that story - so many updates and developments and then you see one that directly effects so many of us and might be too expensive
With tamoxifen, my letter from the onc implies I go to my GP and ask for it - does that sound right? I know there was also some debate about starting it before or after rads (mrs I think you were before but others are after?) Mine implies it's straight after chemo so several weeks before rads. Need to do some more questioning again.

I had a dentist check up yesterday prior to my "infusion" (which sounds so much lovelier than it is!) of zoledronic acid next week. The dentist gave me flowers!! (I cried, of course....)

Pepper, I'm being started on Tamoxifen just before the rads treatment starts. I could have started it a couple of weeks ago but chose to wait until after our hols next week - don't want to have to manage a new drug and possible SE's when we should be enjoying ourselves! Also the prospect of hot flashes in 35 degrees of heat didn't fill me with much joy...

Chewing thinking of you today.

Jo, as Pepper said: step away from Google!
One of the things I love about this thread is that nobody here spouts crap, scaremongers, etc. Everything here is constructive and supportive and has been of great help to me. I'm sure you will find the same and fingers crossed for you

Hi pepper, yes I started rads and tamoxifen at the same time and I had to go to my GP to get the prescription. Now it is ordered monthly by my local chemist and I have a little card with the collection date on. I did ask about getting more than a month at once but they won't do it. So it's another monthly reminder, I cried at the chemist when I went to order it the first time. It didn't take much to set me off back then. I'm a bit tougher now. DH and I were having dinner out in Whitby on Sunday evening and the group on the next table started talking about a friend with cancer, no hope etc , it went on a bit. Two years ago I wouldn't have been able to handle that and would have had to move. Strange what you learn to manage.

The current regime seems to be tamoxifen after rads but I'm constantly surprised by the difference in treatment around the country. I think it was something to do with inflammation of cells which happens with cancer and tamoxifen reduces this. Therefore it's maybe better to treat with rads before the cells are being blasted by tamoxifen too. Your nurse or dr will explain it much better but it was along those lines, gives you a starting point.

Out of interest, is anyone being advised to take daily aspirin? That was in the news about two years ago and my oncologist gave me the go ahead after I asked about it. That's also to do with reducing inflammation.

I now have to find places to store the first carload of possessions that dd2 sent home from university at the weekend. I'm collecting her and a second carload on Thursday. We need an extra room! So much for enjoying the sun. We asked her to pack so no bag was too heavy. So she packed an entire suitcase with books, DH nearly gave himself a nasty injury when he tried to lift it. Goodness, I've missed her.

Well,that was embarrassing. Had the biopsies then I had to have some mammograms to check the markers were placed correctly. Half way through I felt a bit light headed and next thing I knew I was on the floor as I had fainted Have hurt my neck a bit but there seems to be no major damage luckily. Had to be wheeled out of hospital in a chair after having a cup of tea and causing a big queue in the waiting area. Nothing like a bit of drama eh? I shall laugh about it one day - crashing to the floor with my boobs out I shall spend the rest of the day resting in bed and catching up with some sleep. Hope everyone else enjoys a bit of sunshine today.

That sounds very dramatic chewing had you eaten beforehand? If you're anything like me you struggle to eat when nervous which could account for the faint. Hope you feel a bit better when rested.

Do you know when you will get the results?

Yes, I had eaten my breakfast. I have an appointment to discuss the results on Monday so not long now. Just need to get it over with and crack on with treatment.

Blimey, Chewingawasp, yes, not quite what you were hoping for. And with your boobs out, too But seriously hoping you're OK after that.

Jo, the sort of things tend to mammograms miss are tiny lumps. The ones that are easy to sort. The type that generally cause teams to go Ooo and Aaah are the 5cm+ ones. Go get a ping pong ball, if you have such a thing in the house. That size. That's what they would have to miss on the mammogram. They'd really need Specsavers, if they managed that one. Breast cancer is really solid. So I think you're pretty safe from it being anything that's been there ages and is more dangerous. If that helps.

Stay off Google. It's nearly all rubbish.

Even if it's really badly behaved cancer, they can usually stop it these days. Truly. We have the technology. Teams either remove it, zap it with radiation, electrocute it, poison it, freeze it, or use potions to convert it into well behaved cancer which just sits there, minding its own business for years and years...until even better treatments come along.

Honestly really darned near impossible to die from early stage breast cancer. And very hard to die from other sorts of breast cancer.

Treatment not fun. Had surgery, radiotherapy, FEC and Tax chemotherapy, Herceptin (briefly..). And more surgery recently when the radiotherapy caused a whole new sort of tumour (very rare - lucky me . Still here, five and a half years later. Working full time. Going on holiday. All the usual stuff. Lots of us Oldies are. Fewer and fewer people are needing the tougher treatments now. The newer stuff is milder and more effective.

Fingers crossed for good results ahead. And for everyone else with their own results.

Those with mets, do talk to your teams about the new stuff from the ASCO conference. Plenty of newer ideas happening. Triple negative cancer has three new drug options in the trials, for example, all with interesting results.

Hi to everyone I am still waiting for biopsy result and hoping to stay sane in the meantime my boob is purple and yellow still
The posts on here are just a beam of reason when the mind goes into overdrive so grateful to everyone
.
Chewing I was told to sit up slowly after biopsy as loads of ladies faint , hope you're feeling a bit better
Just doing the normal stuff today and trying to take it on stage at a time x

Chewing, that sounds very dramatic and undignified. I'm sure you will be able to laugh one day. When are the results due?

I will definitely laugh about it mrsrhod especially as I went backwards into the bin . Will get results on Monday so am trying to prepare myself.

Hi Celendine - hope your boob goes back to normal colour soon. I wasn't told to sit up slowly but I didn't exactly get up fast in any case. Oh well, it was something different for the mammogram ladies .

Evening all, not posted on these threads before but have lurked. I was diagnosed with breast cancer about 3.5 years ago, in my late thirties, went through all the treatment (lumpectomy, ANC, chemo, rads, herceptin, still on tamoxifen) with accompanying neutropenic sepsis, hairloss, lymphodoema, cellulitis etc etc and all seemed to be well, but I recently found a lump in the other breast.

Appointment on Friday at the One Stop Breast Clinic to find out what's going on. Logically I know it's probably nothing but they told me that last time... This time I'm far more scared. Not sure why I'm posting really, except that there I can't really offload properly to anyone in real life.

Sorry to whinge.

Hello pontiffactais. Please do not apologise! You must have been reading the posts on the thread and realise many of us here are going through or have gone through what you are now. I guess in your case, as in many other of the lovely lacies here actually, it is the fear of the return of the cancer after having been theough it all that makes the anxiety and fear all the more worse. Several of the ladies here have had a recurrence or secondary cancer. I truly hope your lump turns out to be nothing but if it is cancer again, I am sure you already know from amber's posts that it is no longer as ominous as it used to be. I can only imagine what must be going through your head and how you feel after several years since your diagnosis. Please feel free to come here and talk or ask or have a good fant. We understand and we are in this all of us together.
Best wishes

Oh do pardon my typos..i am notorious for them :)

Just popping in to thank you all for your support and to say I'm still here, testing along, gaining strength from your positivity. Wishing lots of luck to those awaiting results. It's a horrid time (and I was only waiting 48 hours from first symptoms to basic diagnosis). to you all.

Yes, I am one of the lovely lacies on here
Pontiffactais, echoing the wise words of Royalmama.
If it's in the other boob, that's almost certainly not a recurrence, that's a possible new primary. So no more likely to cause your early departure than the first one was, really.
And if I were an oncologist (which I am not), I'd be very pleased that this is 3.5 years after the first time. The longer the time interval before something else happens, the better the odds for people. That's a good bit of time.
So, if it is a cancer, the odds are very strongly in your favour, I'd say. But yes, it's bound to be eek with extra eek, especially with no-one in real life to talk it through with. Hoping it's a cyst or something else annoying but benign.
Plenty of people on here to communicate with, though. Keeping things crossed for a good outcome.