**Tamoxigang 53** Roll up, roll up... Anyone with any cancer (or test-waiting) welcome!

[MarthaCostello]

Good evening all,

The old thread had nearly run out when I posted so I have taken the liberty of starting a new one before it fills up completely.

I hope the title is OK - there isn't actually that much room, I was trying to fit in that people should come along even if they haven't been diagnosed yet.

If you're new here welcome to the Tamoxigang thread. This is a great place for anyone with any type of cancer (it originally started out as those taking Tamoxifen for breast cancer, hence the name, but has expanded). Please introduce yourself and make yourself comfortable! You're more than welcome here if you haven't been diagnosed yet too, sometimes people find it helpful to talk through their fears whilst waiting for results. And we will hold your hand until you find out, and hopefully wave you on your way with an all-clear :)

There is almost always someone around to chat, or to answer any questions. Nothing is off-limits here. This is somewhere to offload any fears and frustrations, in a safe place where someone will have been there before.

I hope everyone has been enjoying the gorgeous summery weather

mrs the first year is always the most difficult at uni. I would expect your DD just needs to complain and let it all out.
fresta I had too many positive nodes and hence full clearance. It is better to get them all out, but yes I too felt devastated the day I was told. Treatment will hopefully work on ensuring that nothing comes back and I am sure we will benefit from it. Hang in there. It is a long road.
Best of luck.

Fresta,
Not sure where you are getting your statistics from, but they're extremely not correct.
The odds of being alive and well at the 5 yr marker, with modern treatment for boob lump 3.2 cm, few smaller others, and some lymph nodes, clear CT scan, ER+, is 92% not 60%. Have you been Googling? Stay away from google. The info on there is complete rubbish. And quite a bit of info on the standard cancer charity sites is out of date now too. The newer statistics get updated every few weeks. I have the advantage (?!) of seeing the same research as the oncologists get, each day, so the science is fresh from that.

So, that may help a bit. Sending

Thanks Amber - here is where I read 60% of stge iii survive 5 years! . I much prefer your statistics! Please tell me this is out of date! I think I am just in panic mode at the moment- every appointment seems to bring me a worse prognosis. I seem to have gone from having the breast nurse say my lump felt benign, then small 2cm tumour, then extensive breast tumour, and now goodness knows how many lymph nodes involved. I don't have an official staging given to me yet and won't be having axillary clearance until I have my breast surgery so not sure I will ever know for sure how many were cancerous if the chemo clears the cancer. I wish there was an alternative to the axillary clearance, I am just petrified of having a MASSIVE arm form lymphedema. (yes - must stop googling!- blush)

There are eight sorts of Stage 3 breast cancer, each with their own survival statistics. That page generalises wildly. Your sort, on what we know so far, is the 92% survival at 5 years sort. That's the peril of statistics. And I do wish the cancer charities wouldn't do this to people. They do many fine things but that isn't one of them. Scares the wotsits out of folk.

Fresta I am sadly living with Lymphoedema in the arm and breast, following surgery 2years ago. Since diagnosis I have worn a sleeve daily, and done simple gentle exercises. I see the Lymphoedema nurse every 6 months to be measured and get new sleeves. My arm is only slightly larger than the other, no one would notice by looking! So please don't think that Lymphoedema is the end of the world.....because it's not!

Plus lots of women have the clearance and DON'T develop it, so you may be one of the lucky ones. Right now you have to concentrate on getting rid of the cancer. Take it one step at a time. Wishing you all the best xx

Thank you so much amber and love, you are right, getting rid of the cancer is the most important thing!

On the positive side, It already feels as though my tumour has change, its really soft now and hardly feels different to the surrounding breast- did anyone else get stabbing or stinging pains in their lump?- they have stopped now, but in the first few days after chemo I swear I could feel it dying!

Fresta I hope you're feeling a bit calmer today with that great input from amber and nanny. It is horrible when you feel as if every appointment brings more bad news to get your head around. I always found this thread so helpful when I was in that position. I had a feeling there was something wrong with those stats but so good that amber was able to pin it down.

Waving to stormy and hoping you are ok today.

Mrs the sciatica comes and goes although it seems to have forgotten the 'goes' part at the moment I had it acutely back in March, following on from my boob surgery. Then it gradually got better and I had a few painfree months but now it's back again. I think I got a bit blasé about looking after my back. I'll always have a susceptibility I think. It's rubbish because it's so damn painful and stops me from being able to function. Feeling a bit better today though, thank goodness so fingers crossed.

Hope your dd is doing ok. Its a massive adjustment for them isn't it. Mine (3rd year) is back next week for a few days and messaged me yesterday to say she can't wait to come home. I know she's really enjoying uni but I think sometimes being independent and grown up is just a bit much and they need to just be looked after. I still feel like that myself quite often

Ds is off at an open day today. He's having a 'year out' which up until now has involved mostly being in bed or on his xbox and I was despairing that he would ever have a future but he's just texted me to say the course looks amazing. I can't quite believe it.

I'm rambling now so will be on my way.....have a good weekend everyone

I saw my oncologist yesterday ... I see him every three weeks. I think I had to wait about 3/4 - 1 hour this time round. He apologised for being late. I said that he was a very busy person (I see him privately, thanks to work BUPA, but he is the head of the Breast Unit at the very big regional centre/teaching hospital down the road ... the one that had problems with the CQC recently). He said, that it wasn't that, it was that he chatted too much!
Anyway, as far as he could tell, my current chemo appears to be going well as I have got rid of the aches and pains, and apart from Week 1 (when I still manage to get to work) I'm not tired. I have the usual revolting taste in my mouth and some heartburn (and rather more wind than usual, so let's not go there). Now I just need to know that it is hitting those "rude" (as Amber would describe them cancer cells.
Marshy - sciatica is so debilitating. I hope it clears sooner rather than later and doesn't come back again.
Now I'm feeling less worried (at least for the next 3 weeks) about my cancer, I can worry instead about DS and his grad job search ... but that's a different thread!

Saw Oncologist last week and she's booked me in for a bone scan, as I expected. Although she didn't examine me?! Which I found a little odd. Anyway letter arrived and it appears they are going to do a bone scan and a SPECT CT scan! Which apparently is a more detailed 3D scan? Or at least that's what it said when I googled it.

I was feeling totally relaxed, just thinking they were being super cautious, which is good! But have been a little unnerved since finding out its 2 scans! I would of been okay, if she had mentioned it but to just receive a letter with the appointment, has left my mind in overdrive.....and I know you all know that feeling!

I'm trying to reign in the negative thoughts and to stick with the thought that it's just wear and tear, I'm getting old, or at least my body is It's just so frustrating to be back on this treadmill again, although I'm not sure I ever got off it!

On a plus, IF the scan comes back clear, I can hopefully relax for a bit.

Hope everyone is having a good weekend. Xx

lily glad the chemo is working well for you!
Marshy I hope the pain improves soon, I know how you feel. I spend most of the day and night in discomfort and it's very tiring!

My fingers are crossed for you that they find nothing nanny.

Can anyone share their experience of lymph node clearance? I am so struggling to get my head round this one and very scared of it. How big was your scar? How many more positive nodes did they find? How long dod it take to recover? Do they do it to get rid of the cancerous bits or more as a diagnostic tool? Won't the chemo kill the cancer in the nodes anyway? Has anyone refused it or had radiotherapy instead?

Nanny sorry to read you will be going through scanxiety.
SPECT looks to be a newer and more efficient PET scan. I hope you don't have to wait too long for results. I get rather anxious and gloomy waiting for mine ... Planning my funeral, considering changes to my will etc. Then, when I see the Onc I have to remind him that I am expecting results! As mine have all been good, post initial bombshell, I then leave the hospital a different person to the one who walked in. Fingers crossed for you!

Hi Fresta, haven't been on for a while but can help with lymph node clearance info. Had mine done with a skin sparing mastectomy. Had my sentinel nodes done previously for diagnosis and they found one of the 3 had cancerous cells so that's why had clearance. The clearance showed no more nodes were affected which was good! The scar's quite long but hidden under my arm (about 10 cm) very neat and healed well is still red but going shinny now using bio oil daily. My armpit is an odd shape now quite hollow. Don't have much nerve sensation there any more so no more shaving with a razor! As had the skin sparing mx, it's still swollen around the arm pit area (had op in August) and generally feels odd but I put that down to the the implant as its a foreign object iyswim. Also chemo makes it uncomfortable at times too (having fec no 3 on Tues). It's doable though. Am glad I had even though uncomfortable for a while as now know it didn't travel any further along that route. Chemo prolly would have killed it but it's reassuring knowing it's not there and also that chemo will kill the strays. I'm borderline for radiotherapy but have decided to have it as want to throw everything I can at it to hope it doesn't come back. Hope that helps, hope everyone's enjoying the lovely Autumn day x

nanny i hope the scans bring you nothing, but good news. Will have you in my thoughts.we definitely know what it is like to have to go through that!
fresta i had full clearnace along with my lumpectomy in July. They found many , too many, positive nodes and so the clearance was vital. The things to know regarding axillary clearance are: first you will have drains for about a week to ten days. i found this annoying but doable. The affected arm did stay numb and weird for a while and to this day my arm pit is still weird but my arm pretty much normal. I did the stretching exercises religiously and they definitely helped restore my arm mobility and eased any discomfort. I still do them sometimes when my arm feels funny. Lymphedema, yes, is a risk, but so much has been developed to help sufferers that people can go about normal lives with it now, as Nanny explained. I was told this condition can strike at any time from now till say ten years later, so it may or may not happen and getting rid of the cancer is definetly crucial, as the cancer cells can spread like wild fire from the lymphs.
How to prepare yourself? Remember there will be a drain, so consider that bit of disruption to normality. Also, learn and perform the stretching exercises to help avoid lymphedema as well as stiff shoulder etc.
you will be told never to allow any needles into your affected arm, and no tight bandages or blood pressure bands in that arm. Also, you are going to be told to not carry heavy weights using that arm. All these precautions are to help avoid lymphedema.
Best of luck!

I haven't posted on here for a while, but I do check on when I see the thread on active.
I was dxed in 2015, 8 weeks after the birth of DC3, at 37.
Anyway, I had stage 3, triple negative, tumours in both breasts. Later found I was BRCA2+.
Had bilateral mx with node clearance after 6 months of chemo.
My armpits and the back of my left arm are still numb and I get occasional pins and needles. Apart from that, I'm fine, have full range of movement and no lymphodema so far (touch wood).
I'm more likely to have to 60% 5 year survival as I'm triple -ve, but things are good just now. Hi to all the oldies and to the newbies - I can say that cancer isn't the first thing I think about when I wake up in the morning anymore!

Hi all - had my results on Friday nd they were worse than I was hoping, I had already resigned myself that it W's cancer but found out the tumour is 7cm and is lo in my lymph nodes. I am trying to be positive but not doing very well 7cm seems huge.

The cunning plan is sketchy the the moment as the consultant wants me to have no MRI, bone scan and lots of other tests first but she sid the chemo will start first in about 2 weeks to hopefully shrink the tumour and then I will have an opp (probably a full mastectomy) followed by radiotherapy.

Has anyone else had the treatment this way? I thought they always operated first and this makes me even more scared. They obviously think the tumour is too big to operate.

I asked if she thought I was going to survive this and she wouldn't answer me just said she needed the results from the other tests first.

Every time I look at our daughter I want to cry, we really struggled through IVF to have her and now Im terrified I'm not going to be around for her for much longer.

I had chemo first. The tumour in my right breast was about 7cms too, but it had reduced hugely in size by the time I'd completed chemo.

Weebarra - thank you for posting, thats very reassuring, hope you are well now, forgive me but I have only read bits of this thread, it's all very raw at the moment so I haven't read too much.

I need to get out of this mood, planning to see my GP tomorrow to ask for something to help me sleep as I'm finding it impossible.

Hi Stormy, so sorry you're news isn't as good as you hoped . This cancer malarkey is shite isn't it. Try not to worry about what the consultant said (or didn't say) they have to be cagey and can't tell you your outcome as they don't know themselves yet. Lots of people have chemo first to shrink the tumour, they usually scan throughout chemo to see how much it's shrunk and can change regimes if not. Hopefully the clued up peeps on here can give you more info. I just wanted to say am thinking of you, it's horrid not knowing and you will feel more able to cope when all tests have been done and you're plan in place x

Stormy I'm so sorry to hear the news isn't what you wanted to hear. I really wouldn't pay too much attention to what the consultant said about survival - they were very evasive with me in the initial stages too. I think they're so frightened to suggest you will get through it - but remember that most of us do, even with lymph node involvement.

I have 5 friends/acquaintances diagnosed in the past 5 years, with 3 of those having chemo due to lymph node involvement and we're all still here to share/compare war wounds.

Keeping everything crossed that your next tests give you better news

As a separate note - it's interesting that you had IVF. I found my lump after IVF and it always made me wonder if that was to blame.

I found my lump immediately after pregnancy and wondered if the hormones had kick started something that had been lurking!

Thank you everyone, I'm so so glad I found this site.

It kind of makes sense doesn't it the amount of hormones racing through our bodies during pregnancy and especially after IVF

Hi stormy. I am having chemo first to shrink my tumour, I'm not sure exactly how big mine is as the doctors haven't been too forthcoming with this, but it sounds like it's over 3cm with some other areas surrounding it. It was described as extensive and diffuse, which I assume means it is interspersed with normal tissue but confined to the upper outer quadrant so they didn't describe it as multi-focal. The idea is that if it shrinks then the surgeon can do breast conserving surgery rather than mastectomy.
They did say that it is becoming more common practice to do chemo first in cases where they think there is a chance of metastasis in order to catch any circulating cells earlier, ie, bigger tumours or lymph node involvement.

Thanks for the replies royal and staygold, if you got through it then I am sure I can too. A full clearance just wasn't something I had planned in my head, but I guess the game keeps changing with this cancer malarky! I'ts good to hear it's not all bad.

Stormy, like the others say, Consultants simply can't give any clues out until they get the test results back.

Chemo before surgery is very common these days. It lets teams see what the cancer does. They will monitor the size changes during chemo, and that gives them further info about a) what works...so they can alter the treatment course if needed and b) long term likely outcome. It's called neoadjuvant chemotherapy. I had it too.
If it helps, the difference in survival odds between a 2cm lump and a 7 cm tumour is about 1%, on the current fab treatments. So nothing you have been told so far is much of a problem as far as I can tell. The scan results will be the important ones, and the way it responds to chemo. So, no need for particular worry at this point.

Fresta don't have any words of wisdom but let's hold each other's hands and get through this.

Amber - thank you, I wish I could just switch off my brain and stop thinking the worse.

I need to go back to work tomorrow (first day back since the diagnosis) and I'm dreading it. I know everyone will be really nice but I also know I will cry again, wish I could be stronger