**Tamoxigang thread 51**... no more sangria, but maybe some mulled wine!

[MarthaCostello]

Hello all,

The old thread has nearly run out so I hope no one minds me making a new one. And am I allowed to mention the Big C... Christmas?! our last thread was started in July so I reckon this one might take us into December.

In honour of that, I will lay out some mulled wine, mince pies and I have wrapped myself in tinsel.

A warm welcome to jomidmum, but sorry you've had to join us. No one wants to be in this club, but this thread is a rather nice place to be. Wishing you a speedy recovery from your op, and hoping the pain eases soon.

Massive hugs to beccajoh

A big yippee for Marshy, what utterly fantastic news.

Sitting on the paranoia box for ConsiderablyBiggerBuns, I hope your MRI results are good - when will you hear?

Waving and sending love to everyone else.

I wonder if seeing as we are on a new thread, it might be worth just giving a bit of history for new posters? I will put mine anyway, and then others can if they want to. I am coming up to two years since my bowel cancer diagnosis (grade 2, stage 3c, T2N2M0R0). I had major bowel surgery and six months of chemo.

Hello everyone! This is my first post on here. Diagnosed yesterday and in a bit of shock. Went to see GP at beginning of Dec as I had noticed a small lump. He thought cyst but referred me as a precaution. Ended up having 6 core biopsies and one of a lymph node. Yesterday was told that I have a 9cm area of malignancy with 5 separate malignant tumours, all different. 1 is HER2+, a couple ER+ and a couple negative. There is cancer in lymph nodes too. A bit of a shock really. So am stage 3 and tumours are grade 3.....very aggressive apparently. I am 41 with a DS who is 5 and DD is 3. Start chemo and herceptin next week, after that will have a mastectomy, then radiotherapy, then tamoxifen. CT scan to check no further spread next week too, although no date for that, and I think also having a node clearance? Not sure really as have forgotten a lot of what consultant said! Can't quite believe I'm posting this info :/

Hi Shrew, sorry you find yourself here but it is a hugely supportive place.
I was pretty much exactly where you are in October 2013, other than my cancer was in both breasts. My DSs were the same age as your DCS too, and I had an 8 week old.
I'm now 6 months post treatment and am going back to work on Monday. It's not easy, but you will get through it.post on here as much as you like, there is always someone here to help.

Waving a sad hello to shrew. You must be in shock. You're honestly at the worst time as newly diagnosed makes your head spin. Am hoping it might help to hear that I was 44 at diagnosis (my DS was 5 then too), also grade 3, stage 3 with cancer in lymph nodes, but I'm nearly 5 years on now and no sign of recurrence. Treatment's a slog, but you can do it and there's a big chance you'll get through and live life to the full. xx

Hello shrew, I am very pleased that you have found us, welcome but sorry you're here. As smee says, you must be in total shock. Trying to remember what you've been told is very difficult but I'll pass on the mantra - dont google. Whatever you find will most likely be out of date and not specific enough to you. Make use of your breast cancer nurse, if you have one. Ring them whenever you need to and if that's not possible this is the place to ask questions, anything no matter how trivial it seems. I was warmly welcomed last May and I still find it a great comfort although I am through treatment, apart from tamoxifen.

Smee, I would really like to thank you for posting over the last couple of days. It is incredibly encouraging to hear from those who have been through this and are years down the line. I think it's so important to believe that things will get better with time. I'm very grateful for your wise words.

Hello shrew, you will be in shock and you will forget things. It might be helpful to phone your breast cancer nurse in a few days and ask her to recap the conversation. I did this and it turned out I had misremembered or forgotten several important things.

Your breast care nurse can provide you with a book which you can use to help your children understand. I've seen one called 'mummy's lump' which is written for younger children. I felt supremely ill equipped for such conversations so wanted to know I was saying the right things.

Personally, I found it very helpful to tell people. I did wonder if I'd developed 'Cancer Tourette's' for a while but I am glad I was so open as we have had so many offers of help, meals for the freezer, cups of tea, etc. I also made sure DH knew he could be open with people as I knew he would need support too.

Now is a good time to check if you have any insurance policies (critical illness) as any payouts will help lighten the load.

I found the school very helpful, they have kept an eye out for any unusual behaviour which may be related to this and have offered family support.

Above all, now is the time to be kind to yourself.

, and . Sod as they are bugger all use in a crisis!!

Shrew Im sorry to hear your news but I'm glad you have found us. This thread was a real life line for me, still is. People here really do understand and you can say or ask whatever you want and someone will have experienced similar.
One bit of advice from me is to ask for sleeping tablets if you can't sleep. Everything seems worse at night and if you're not sleeping it's harder to cope with what's going on too.
Be kind to yourself and accept whatever help is offered.
Try not to google, we've all done it but it will only make you panic as a lot of the info on the net is out of date.
I was 41 when I was diagnosed too, now 43 and still very much here :)

Thank you for your warm welcome, my biggest worry at the moment is money...my husband and I swapped at the beginning of the year and I now work full time and he is a sahd! I had been at home with kids for previous 4 years.....out of financial necessity rather than choice, although at the time I was very happy with how things had worked out! DH had a bit of a breakdown at the beginning of this year and finally admitted that he was desperately unhappy at work and just needed a break. So I was very lucky to find a fab job, and DH stayed at home with the kids. Up till now all has been fantastic. My great job does not pay company sick pay ( it is a small online retailer) and whilst I will have paid time off for Dr appts etc, we are going to end up with me just receiving SSP :(. Money is very tight anyway, no insurance policies, savings etc so panicking now! Am going to try and work as much as I can, but realistically I know that there will be lots of time off involved :(
There is a Maggie's nearby so I am going to see a Macmillan benefits advisor this week I think.......aaaargh.

Welcome Shrew, though sorry you have to join us. As far as your job is concerned you may not have to be off work during all your treatment. I mixed working at home with going into work during chemo. Some days in the cycle aren't good but I felt OK 2 weeks out of 3. Others who have had surgery and rads can comment on how they felt and how much time they needed to take as sick leave. Macmillan or Maggies should be able to advise about finances.

No wonder you are worrying, Shrew. The Maggies' advisor will be of great help, I'm sure. I think Macmillan can also provide one off grants to help with related expenses so it might be worth looking into that. Also, if you have a mortgage it could be worth extending the term to keep your monthly payments as low as possible.

I wish I had more words of wisdom, but I am trying to multitask and am failing miserably. I'll have a think to see if there's anything else I can suggest.

Hi Shrew. Lots of excellent advice above. I had some good advice from Macmillan about finances so definitely worth a look. Hopefully your work will allow you to be flexible. Lots of people on here were able to carry on during the times they felt well.
I found all the information overwhelming to start with and tended to focus on one part of the treatment at a time otherwise it all became a bit much. As others have said, it isn't pleasant but it is doable.

Hello....I've been lurking for a while and thought I better introduce myself as I've got a few questions. Here's my backstory: age 49, left breast started to look different mid-September 14. Gave it two weeks to change back and it didn't so went to GP who got me to the hospital for mammogram and ultrasound two weeks later. Foolishly I'd gone by myself but got the impression that something was definitely wrong when the nurse, surgeon, radiographer and another nurse doing the mammogram all asked if I'd brought someone with me. I had a mammogram and biopsy years ago and had to go back for the results. This time they told me straight away that they were sure they were looking at cancer and that it was also in the lymph nodes. Held it together in the hospital but lost it sitting in the car park and couldn't even reverse the car. Had to phone husband at work to come and help.

Anyway, results showed I had grade 3 lump (ER positive HER2 neg) and inflammatory breast cancer that was changing the skin. Subsequent CT scan and MRI and biopsy have also shown small lump in right lymph node. Started chemo on Nov 4, FEC-T, 3 cycles FEC done and just about to start the taxotere at the end of this week. I have done pretty well on the FEC, the worst thing being hair loss and hiccups. Agree with all your comments on here about the first few weeks and uncertainty being the worst part but also telling people. I still haven't told friends or family who live at a distance what is going on. Everything felt like a roller coaster at the start, completely overwhelming.

So my questions...do I have to paint my nails dark for this new chemo regime and will it make a difference?

Also I have an appointment soon to discuss surgical options. What do I need to ask? (he surgeon has already said they won't be able to reconstruct at the time of mastectomy but hasn't yet said if they will be able to reconstruct eventually because of the skin involvement. I have really quite big boobs. I have never liked having big boobs and quite like the idea of being completely flat. The surgeon has said it would be better to just remove one but that was before they found the lump on the right lymph node. I'm hoping this will change his mind about letting my have a bilateral mastectomy. I am horrified at the idea of having one remaining big boob and one big prosthetic boob.) Is it just temporary this idea I have that I would be much better off with a flat chest and a padded bra in a dainty b cup.

Also when will I stop freaking out every time I look in a mirror? I'm wearing a wig or cotton beanies but just don't recognise myself anymore.

I think I've probably rambled for long enough now....

Welcome don't ask :) I'm glad you decided to post. I had fec t and found the fec but easier than the tax though that could be the cumulative effect too. With tax I found the horrid taste in the mouth hard, stock up on ginger things and sweets to suck. I painted my nails a dark colour and they were fine.

I can't help with the reconstruction questions as I had a lumpectomy but I'm sure someone will be along soon who can

The hair loss is really hard but it's only temporary, a year on and I do feel like I look like myself again, not sure that's always a good thing lol

Keep ticking off the days till you're finished the treatment it's a long haul but it sounds like you're doing well.

Dontask welcome. I painted my nails through the tax and kept them all. They did start to come away from the nail bed half way down but this was after the fourth tax. I kept them very short and they are now growing out nicely. Another thing is that don't be afraid to ask your doctor for stronger painkillers if you need them. Sometimes paracetamol and neurofen isn't quite enough.

I have had a bilateral mastectomy but had recon at the same time. I am going a bit smaller but have found that I don't want to be too much smaller so I still feel like me. You could always try out smaller prosthetics and then go for larger maybe if you are not comfortable with it? Am not sure how this affects the type of op you have to start with- maybe something to ask.

I am still not entirely comfortable looking in a mirror although I am now going around with the very short hair I have and no scarf. People are complimentary but I would like to feel a bit more like me so am wishing it would grow a bit faster!

Don'task, you're on the homewards straight with chemo if you've done FEC. Even if you do have a tough time on Tax (not everyone does, I wasn't so bad on it) let's face it the end's in sight.

Thought I'd tell you how I navigated my second mastectomy as it might help if you're set on it. Basically unless there's a clear medical reason they will try and talk you out of it. My lot did, so you need to be unemotional and very clear as to why you want it. Their understandable worry is you're in the thick of treatment so possibly not thinking straight. You have to convince them you are. Even if you can convince your team, you'll need to see a psychologist. I got mine though, so it can be done!

I had 6 cycles of Tax (no FEC) and painted my nails. Fortunately didn't lose a nail. In fact, my general beauty regime during chemo was many times more intense than my usual efforts. My manicured and polished nails looked a lot better than my normally unkempt and unpolished nails do.
List of good things related too chemo:
Cured fungal nails on toes
Made skin look glowing
No need to shave legs/underarms
Made me spend time on beauty regimes
People liked my new hairstyle aka wig
(Though I haven't forgotten the grim bits and as I am on oral chemo now, I still have metal mouth and wine still tastes bad - though Aperol Spritz tastes yum!)

Hello to shrew and dontask. You have come to the right place. shrew we will all tell you that you are at the hardest point of the whole regime. Once you have a treatment plan you will feel more in Control and if you are at the point when you are constantly planning your funeral (most of us have been there) that too will pass. What a ghastly way to start the new year, but just think that you should be clear of all your treatment by next Christmas. The money must be a worry. I managed to work through a lot of my treatment. I took 3 weeks off for my BMX and node clearance but actually returned to work (remotely) after less than 2. I worked 2 weeks out of 3 during chemo (although if I am honest the last 2 cycles were tough) and I found rads not a problem at all and worked around. I must stress though, that was all done remotely so that I could have breaks whenever required and some days I didn't manage full hours. I know that I was very lucky with my employers who would have been happy to sign me off for the duration. I hope you get some reassurance soon, you really don't need anything other than your recovery to worry about. The other thing that I wanted to share with you was that I insisted ona BMX rather than MX. My surgeon tried to persuade me otherwise although the decision was mine. Thank goodness I stuck to my guns as they found DCIS in other Breast once it was removed.
dontask I had my nails shellaced during chemo and have had no problems with loss, although they are very flaky. Like lilymaid this is the best they have ever looked after. Be warned though, professional manicures are quite addictive and I now have quite an expensive 3 weekly habit. My chemo finished at the end of September and my hair stated growing back mid November. I quite liked my wigs but it was so hot this year that I often went bald in 'trusted' company. Now that I have a cm of growth I am going out with no scarf. I did get a bit grumpy at NYE with people constantly telling me how stylish and chic my hair was. If it is such a good blooming look why aren't they all rushing out to crop theirs off and letting it go grey naturally. It does look okay but also looks my age (49) and I miss my long brunette hair. I am seeing my hairdresser on Tuesday abou when I can get some colour on it. I have seen photos of malt on facebook and her hair is lovely, I know she is 12 months ahead of me, so am also hoping to actually have a style I like by autumn.
Thanks for the tips about coping with the lymphodema. I have a clinic appointment on the 8th but will try elevation before that. I hope all of you suffering from post-christmas Blues are feeling a bit jollier.mi go back to work properly on Wednesday, so that is a bit scary but exciting too, as it is another milestone towards normality.

Thanks for the info about the second mastectomy. I'm pretty convinced I want both done at once although we only know for definite about the tumour and DCIS in one. I just don't trust the other one any more!

Plus, I want to match. The lumpectomy has left me wonky which is helping me come round to the idea of more surgery. I want the best chance of matching, cancer free breasts possible. I want to like them again instead of feeling like I have a pair of bouncing time bombs strapped to my chest.

Buns you are very kind thank you :) Agree with the comments about short hair and how lovely it is being very irritating. I still miss my long hair especially as mine used to be the same length as dds so it's a constant reminder. I hope work goes well like you say it's another step towards normality which can only be a good thing

Save me I guess bouncing time bombs is a good way of putting it :(

Must go to bed earlier tonight, teacher day tomorrow

Hey Saveme,

I also successfully talked my surgeon into BMX rather than just MX. But he made me wait six months before he would do it (so annoying, still irritated about being made to feel like I did not have control over my own body).

My arguments were the same as those already mentioned. I also said that yearly mammograms would not provide me with comfort, as they would just assure me that the last 12 months of worrying had been unnecessary.

Ditto keep calm rationale and in control. My surgeon talked about unnecessary interventions etc, but then conceded that every women in his team would do the same.

Also, (sorry this is turning into a rant). I couldn't understand why he seemed to think that I would want to keep the other one. Just seemed totally logical to whip it off too, and end up with a matching set with less risk of recurrence. The other one was just reminding me that the other one had let me down!!

Completely understand that some women do not feel this way.

But I do really hate being told what to do, which is probably why I'm still a bit annoyed that I was made to effectively beg.

I'd be ranting too, that's crap!

If I have one done then I've been told I'll need an op on the other one to make it match up as much as possible, therefore both are going to end up scarred anyway. I might as well have a 'good scar' from preventative surgery.

My surgeon was in agreement to me having a bmx, it was the insurance company we had to pursuade! (They soon changed their mind when we made it clear to them how much money they would save if I wasn't going for numerous expensive tests over the next few years!)

What my surgeon found harder to accept was that I didn't want reconstruction. He was excellent, and it's not his fault he is a man , so don't want to put him down but I did wish he wouldn't keep talking about what "women want".

I did find it hard to find anyone to talk to about no reconstruction so if anyone wants a chat, I'm free!!

I'd be really interested in hearing why you decided to not reconstruct as I've not managed to make contact with anyone in RL who made that decision. I must admit it's not really crossed my mind. Thank you.

I had bad news on Friday.I still have cancer.
Had my operaton on the 18th to remove the lump and they also took 2 lymph nodes.
The biopsy results show that there is cancer still in my breast and also in the lymph nodes.
Waiting to see an oncolagist but my next op will be on the 23rd Jan.
I have decided that if anything is found after the next op that I am going to ask for a double mastectomy.
Will definataly want reconstruction and I think I will feel better about myself if I have a matching pair plus peace of mind.
I know I am not on here often but I do read the posts...

Look after yourselves

Oh Cleanasaw, what a complete sod. Bloody cancer, eh?! I have heard that same story from so many and it's a double hit. They will get it all and you will be fine. Repeat on a loop. Hugs from me. xx

wine, I so nearly went that way. In fact no reconstruction was my first instinct, but my Surgeon convinced me to have immediate implant on two fronts. First was my son was still young and she asked me if he ever saw me naked, pointing out that if he did reconstruction might be easier for him, which felt true then (not now he's bigger and never sees me naked!). Also she suggested that the implant would stretch the skin, making it better for rads impact. Both made sense so I went for the implant. I think now that if anything went wrong with the implant, I'd just get them both out and go flat chested. Easier from a distance as I feel much more in tune with my body and how it has all affected me mentally. Happy to chat if it helps.