**Tamoxigang Thread 52** With virtual tea, cakes and chat for all with cancer concerns

[Lilymaid]

We were almost at our 1000 post limit for Thread 51 - hope the title is OK but wanted people to know that we aren't just about people on Tamoxifen but for all with cancer concerns!

Sorry to hear that you are struggling Minty.

I got my diagnosis yesterday. I have stage 3 BC with spread to lymph nodes. I also had CT and bone scans with are thankfully clear.

I see an oncologist tomorrow (which is very quick) and will start chemo asap, followed by surgery. Not looking forward to not enjoying food, early menopause or any other side effect really. I do have a great support network though, which I am thankful for.

Hope that everyone is ok and able to enjoy the sun.

Whoops, double post sorry!

Thank you for the explanation, zombie, that makes it a bit clearer it's all a bit raw at the moment but I like the idea of treating it like a chronic illness, sounds better somehow?!
Sorry to hear that you're struggling, my mum had BC and I kno there are good days and bad days when it comes to cancer and its treatment. I am in awe of the nhs, it really is awesome

Waving to all.

hotchoc sorry to hear you're joining the club. I had bowel cancer so can't add much useful info about breast cancer, but good that your scans were clear, that must be a relief. And good that the oncologist could see you quickly so you can get treatment started!

I had NHS treatment too, and cannot fault them. I don't think private treatment would've made much difference to me.

Boobz glad you've finally got some answers, I'm sure that will be helpful. Most people advise avoiding Google because a lot of the information about treatments and prognosis etc. are out of date, but the pathology stuff is probably more accurate, as long as it's from reputable websites. I love being able to email my specialist nurse, but it must be even more useful when you're abroad! :)

Anyway, just popping in really, hope everyone is doing well

Wow the thread is busy! Nice to see - well, not nice at all really but you know what I mean.

I've read everything and thinking of you all but it's difficult to do proper mentions when only checking in every few days and on the phone as well. Hugs for all though.

Boobz- great to hear that you are getting closer to a plan and that the outlook is optimistic.

Just wondering whether chesty's friend has had any news and how that is going.

I've been at work today and in again Friday so day off tomorrow -yay! It's going ok.

Saw gp on Tuesday. She wants me to have another scan owing to my recent period and had a blood test today to check hormone levels. That has left a nice bruise on my hand. Does everyone have blood taken from hands if armpit nodes have been messed with? I had it taken from my foot once! I'm not too worried about the scan as surely nothing dreadful can have happened since I was discharged by the gynaecologist in January?! I think my meno just isn't finished yet which is a bit ironic as it took me flippin ages to conceive and I thought I would never have a baby and now the periods won't go away!

Today is also 2 years since my dear mum died, just before my first diagnosis. It's been a shit 2 years although even then a few good highlights along the way. I feel better now than I have for the whole 2 years. Felt sad today and still miss my mum so much but it feels ok.

See you soon everyone

Hi marshy, anniversaries like that are always difficult but I hope you've had some good memories of your mum today. I can't believe you're being sent or another pelvic scan, it feels like a never ending round of appts. I hope after my forthcoming mammogram that I get the summer off.

I havent had blood taken recently or my blood pressure taken but I would always now offer my good arm, I'm not convinced the nurses at my gp practice would know about it. At least I still have a good side, so far.

Welcome hotchoc, good news that it hasn't spread beyond the nodes. Sounds like they're going to get you started quickly. The nhs has been excellent for me. We have private cover but it just hasn't been worth using it so far.

My hot flushes seem to be stepping up now after being on tamoxifen since last July. I'm probably getting 10-15 over 24 hours. They're not too bad, I bet a bit warm with a bit of a moist forehead. Not bad enough to search out help yet, but watch this space.

Which chemo are you having hotchoc? Is it the fec - tax regime? Good news it hasn't spread.

Thanks everyone - yes it is good finally getting some answers, and answers that seem a bit less scary than I first thought.

Hotchoc - did you have the sentinel node biopsy then? When did you first go in with your lump to then having the node biopsy and diagnosis on Tuesday? It's been over 5 weeks since I first presented my lump to the GP to getting to this point (although to be fair I did swap between Italian and UK systems) and I still don't know if it's spread to the nodes.

Can I ask all those that have gone through the experience, which website would be a good site to explore for info on double mastectomy reconstruction?

Mrsrhod my hot flushes sound very similar to yours. Bit of a pain but not unbearable. My oncologist suggested acupuncture rather than drugs and that reminds me to ring my GP and see if they can authorise it!

boobz Cannot recommend a site but I have had a double MX with reconstruction. Personally I didn't want the rest of my body cut up so I have gone for expanders. Quite pleased with results even if they are a bit hard! Have gone from an F cup to a D cup. In fact am seeing my surgeon next month to see if I want anymore work done but don't think I do. You do need to give it a chance to settle down. My surgeon was very good and my scarring is minimal .... similar to if I had had a breast reduction (which I suppose I have), but no big horizontal line. She said she had a lot of skin to play with so that helped

welcome hotchoc I think its good you are having chemo first. I was a bit upset when my plan was for chemo first, but in fact it was good as I could see the chemo having a really good effect on the lump.

marshy hugs for missing your Mum. x x

marshy sorry to hear that you had such a sad anniversary yesterday, I have to keep reminding myself when I am banging on about how hard it is with poorly elderly parents that I am still so very lucky to have them.
hotchoc glad to hear that they are cracking on with your treatment and that your scans were clear.
Commiserations to minty, marshy, mrs, foofoo and everyone undergoing post BC menopause, tamoxifen induced or otherwise. My big issues with it are the flushes and really bad muscle problems. I started tamoxifen in October, really bad discomfort at night for a few weeks and then it settled down, however, the sweaty uncomfortable nights have returned with a vengeance. I think I might look into acupuncture. The muscles problems are quite debilitating, I keep pulling them which can vary between very uncomfortable to agony. I have been having some physio but as soon as she sorts one muscle another one goes.
boobz, I will be having a double reconstruction some time later in the year. I'm not sure how much of a say in it I will get so haven't bothered to google, I am hoping they take it from my tummy and kill two birds with one stone, but probably unrealistic.

Thanks foofoo - did you have nipple saving surgery or no?

Did everyone who had invasive breast cancer have the sentinel node biopsy, and did you have it prior to any chemo/surgery?

Buns - have you already had the mastectomy?

If anyone is near a Haven Breast Cancer Centre (Leeds, Hereford or London) then you can have free acupuncture to help with side effects such as hot flushes from Tamoxifen. In fact, the Haven offer lots of free support at any point after a bc diagnosis (so it can be years down the line). This includes counselling and nutritional advice. thehaven.org.uk/ if that helps.

Sorry not to say personal hellos to everyone but there are so many of us that I daren't even attempt it!

Boobz: I had the sentinel node biopsy at the same time as my wide local excision. A V pillow was my friend after the op as it provided the biopsy arm with lots of support at night.

Boobz, I had the sentinel node biopsy in the same operation as my lump removal and have a scar for each. Fortunately it hadnt reached my nodes so I just had rads about six weeks later plus tamoxifen.

Saveme, that's really helpful information thank you, I'm near Leeds and I think I might look into that. I would regard a drug free solution as a good thing.

They are wonderful. You will be entitled to ten free sessions and can mix and match, eg a few acupuncture, a few counselling and a few hynotherapy. Give them a call and arrange a preliminary chat with a nurse, this can be done over the phone or face to face and you'll get the chance to discuss your needs and agree a treatment plan.

Erm.....this isn't a dramatic issue but.......1 week post first FEC. Have felt hugely nauseous and ropey, a bit like seasickness and pregnancy all in one plus general SE's, but coming out of the worst of it. I HAVE been eating. but sometimes just the mere thought of certain foods.....gag! Then yesterday i thought "cripes, these pjs are a bit roomy". And thought.....hang on a minute....got out my smallest clothes (previously known as the "marital breakdown collection", now renamed "cancer chic collection"!) and they all fit like a glove. We aren't talking huge amounts of weight; i was perhaps just edging over a size 10, now comfy in 8-10. So half a stone? In the normal scheme of things i'd think "aye well, silver lining and that....". But i have 5 more cycles......this could turn into an issue I hadn't forseen. Or ever had to think about.....keeping weight ON?! Am hoping the nausea shifts but this could land me in hot water. I bloody love food, but the nausea has knocked any snacking and grazing right out. Anyone?

Most of us found we put weight on during chemo wallaby, not being as active and having to eat what we fancied. Being too thin is alien to me but if you're worried you could ask for advice, I saw posters for dieticians at my hospital

It's alien to me too, believe me, the idea that i would even THINK this.....at first i was "oh hurrah, get me!" Then i thought "oh, hang on a minute.....this can't continue, this is just round 1....!" ??

wallaby Your wardrobe collection names made me laugh. I put weight on during chemo due to lots and lots of cake! I would have been please to lose a bit but as you say if this has happened after just one round there may be cause for concern. Do tell your Oncologist who can try other anti sickness/nausea meds.

boobz No nipple saving for me! Lump was right behind it. Has not bothered me at all which I was a bit surprised at. I am probably going to have some tattoo'd on. There is an amazing female tattoo artist near me who does them for free and her work is quite amazing. You can get stick on ones which I find hilarious

I had my sentinel node biopsy done after chemo.... personally I think it should be done before. I have had discussions with my treatment centre about this, and its kind of a moot point and it can delay treatment waiting for it to be done, and if healing takes longer. If that makes sense.

saveme Thanks for info about Haven. I am not too far from London but the train ticket would probably costs as much as an acupuncture session. V annoying.

wallaby I've not got BC (I have colon cancer) but I've lost loads of weight due to chemo-induced lack of appetite and poor tastebuds. My onco nutritionist prescribed me Ensure TwoCal milkshake drinks at 400 cals a small bottle. They come in vanilla, banana and strawberry flavours and a plain one you can mix with other things eg soup. They are really delicious (well, I think so at least) and they have been a Godsend for putting weight back on and keeping it stable when appetite or tastebuds are low. Full fat butter, cottage cheese, full fat everything has also been perfect for me.

Avocados good too. But really, the Ensure TwoCal drinks are quick and easy to consume so are your best bet for now. They also have complete vitamins and minerals (RDA) so a good supplement.

No nipple preservation for me either boobz . It was never suggested as a possibility. My two mxs have been slight reductions so I have the 'anchor' shaped scars, both very neat and fading fast. I have stick on nipples and enjoy getting them out to show people - when they're in their box as only very special.friends get a personal viewing . I was told I would probably only wear them for special occasions . Still trying to figure out what those might be. I haven't worn them much over the winter but can see me getting them out in the summer when I will have the rather fab experience of being a 55 yo woman who can go bra less and be perky - I thought those days were long gone.You gotta fund the positives somewhere.

Re sentinal lymph nodes I had it done before mx the first time and in the same operation as my 2nd mx. Both mxs were immediate reconstruction with implants and I'm very happy with the results. Don't miss nipples, although I may have tattoos mainly so I can piss off my teenagers who don't have any

Thanks for kind words about my mum. It's hard looking after frail parents buns

Had a bit of a wobble about my pelvic scan yesterday thanks Dr Google but have my sensible head on again today.

Have a good day all. Off to work for me.

wallaby I had a different chemo, for colon cancer, but can empathise with the nausea. I didn't have the same problem with food as I just had to eat whether I wanted to or not because of the surgery I'd had. Without that I probably wouldn't have eaten much either. I did find that actually eating could help a little with the nausea (mini Ritz crackers are best, I still carry them everywhere with me!) and would at least stop me actually throwing up even if I still felt grim.

The weight loss is a worry, definitely mention it at your next appointment (are you keeping a symptom diary? They can be really useful as by the end of the cycle you may have forgotten some of the side effects from early on). Also are you taking your anti sickness medications? There are so many they can prescribe and different ones work for different people, so it's worth asking for more - your nurse would probably be the person to ask, if you have one. GPs can help too. I also wore travel sickness bands from Boots, no idea if they actually did anything.

You may find that you feel a lot better in the next week or two (I think first week is worst and then gradual improvement with FEC, but others will know better). Most people have at least one 'good' week per cycle. So your appetite may return and you may find that you don't lose any more weight and possibly even gain some on the next weeks, so don't panic yet :)

Sorry you're feeling rough, I hope it improves soon

Foofoo - what are your thoughts on having the sentinel node post chemo? I just can't get my head around it... surely they need to know if it has spread to know what treatment plan to put in place? How can you have 6 months of treatment not knowing what stage the cancer is at?

Am flying back to the UK tomorrow and seeing oncologist for the first time on Monday so maybe she can explain it to me...

Thanks for all the other replies - did anyone use Paul Harris at the Marsden for their reconstruction?