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!

Amber that is helpful to read, thank you. DH and my mum have a meeting with my oncologist on Wednesday and I wasn't going to go, but I think I need to find out about all these trials. I feel a bit rudder-less at the moment.

Thanks for all the messages everyone. It does mean a lot to be able to reach out to strangers who are going through similar experiences (although I sincerely hope you all don't reach the point I'm at) I will try and catch up with what's happening to you all.

Good to see you amber with your words of wisdom. Hopefully that will help Becca.

Just wondering how many of you have adjusted your diet, added things in? Have just eaten a bowl of ice cream and drinking a coke because it is the only thing I fancy right now. Keep thinking about how I should really be helping myself more.

Question for Amber.
Great to know that a good social life helps regarding reoccurrence!! Cancer diagnosis has improved my social life significantly. That and the fact that I'm still off work so have the time to socialise.

Have you seen any research regarding alcohol consumption and reoccurrence? I am very much 'life is for living (well)', and am quicker to do nice things for myself. But while I love a glass of red wine (or three), I am wondering if I should be more careful regarding alcohol consumption.

Momoftwo, www.ncbi.nlm.nih.gov/pmc/articles/PMC4039662/ may be useful. A study in May of some 930 people with early breast cancer. They ended up shrugging their shoulders and being entirely uncertain when it was moderate drinking, as far as I can tell from the Conclusion. An occasional glass of something is probably absolutely fine, judging from that study. A bottle a day, no. I know of people who drink like a proverbial fish who went into remission, and people who never touched a drop who, er, didn't. All depends on which genes people have, probably. I read somewhere that it's more likely to affect people with ER+ breast cancer and less likely to be a bother to those with HER2+ , but can't find that article at the mo, so don't take any notice of me remembering it. PS As I oft say, I'm not a medical person. Always ask your own team for their best advice for your own situation etc.

Social life - online stuff counts, as far as I know. Anything that gets people in contact with lots of supportive individuals.

Speedy, General food - www.ncbi.nlm.nih.gov/pubmed/25052230 this study of some 600 people with breast cancer suggests they couldn't find any particular link to cancer from any particular pattern of diet/eating, apart from people who drink too much. Good science around particular supplements such as lactoferrin, Vitamin D, curcumin etc, though - another one to discuss with teams.

Thanks Amber. I'm ER+ PR+ HER2-. My gut was already telling me cut down. I'm nowhere near bottle a day, but too many days at 1/2 bottle...

And great to know that spending time on Mumsnet and Facebook will also help my chances of not getting it again. I'll have to tell that to my DH!!

news.vanderbilt.edu/2011/01/breast-cancer-study-social-network/ is one of the studies on the effect of support networks.

Thanks Amber. Will look into that.

DH thinks I shouldn't go to the meeting tomorrow (the one he and my mum are having with the oncology doctor). I don't know what to think. He's had a long chat with my mum this evening and I guess they're going to talk about things I might not want to hear. Until last week I didn't really want to know the nitty gritty of it all but I wonder if I should toughen up a bit and try and listen to the hard stuff? It's so hard to know what's for the best. Facts and figures scare me.

Oh becca, it's such a hard decision isn't it?

I will be thinking of you tomorrow. Please don't forget we are all here for you, both for support and hopefully for information.

becca, when my mom was diagnosed with pancreatic cancer, her consultant had one meeting with the family (my dad and 6 of us siblings), and spoke separately to my mom. This allowed the family to discuss things we would shy away from infront of my mom. Some of the questions we asked were very blunt, no way would we have asked these questions if my Mom was there. And while the consultant was very open with us, there were no concrete answers to many of those questions. But at least we learned that... And it helped us come to terms with it. But that is just what worked for my family.

Good luck with your decision. And don't forget, this is not just the 'one' chance to have this discussion with your Oncologist. You can always make another appointment to repeat the same information, or to discuss as much of it as you feel comfortable with.

becca personally I was much better at receiving news from the Onc than my partner. What was helpful is to take a trusted and reasonably clever person to take notes.

And what mom says, you can always go back again .... And again!

So sorry to hear your news, but interesting info from amber

I've decided not to go today. I'll have another appointment in about three weeks' time when I have my next scan.

Hi becca, I have no experience of your situation but it sounds like you have made the best decision for you wrt today's meeting. I am at an early stage in my diagnosis and treatment but I am starting to realise that my DH and family have questions which need to be addressed, sometimes without me there. Certainly my DH has asked questions in meetings which I wish I hadn't had to hear, but he needs to ask them, so I can see that separate meetings might be the solution.

Do you have any plans today to take your mind off it while the meeting is taking place? Love and luck

becca, so sorry to hear your news. It must all be v.hard to get your head round, but makes sense to tread slowly and let your lovely family go to consults for you until you're less shaky about it all. Not sure if this is helpful or not, but when I was at diagnosis stage I got a notebook to put everything in; so I wrote it up like a diary. It was great for getting my thoughts together/ bits of research and wisdom/ formulating questions, etc. I've still got it and still write in it 4 years on - I'm not stage 4 but was aggressive stage 3, so never say never in terms of recurrence, etc. I think it makes me feel more in control or something I really hope today goes well and you have a plan soon. It always helps to have a plan! xx

elporto, how are you today? Hope okay.

Becca, I'm sure this is going to be a difficult day for your whole family and I'm so sorry you are facing this. There are obviously things they can do and I hope they will keep you well for a long time to come. It must be awfully hard for your DH and mum too.

Elporto, I hope you're getting better each day. Are the Australia plans still alive?

Nelson, sorry to hear you're in limbo waiting for news, the worst time. I hope it's just holidays and staff shortages that are holding things up.

Buns, how is your mum doing?

Everyone else, thinking of all facing difficult treatment this week, awkward bosses and keeping dc entertained in the holidays.

I've finally got the advice I was looking for and my mirena coil will be coming out as soon as we are back from holiday.

Apologies - realised I hadn't done the summary of my journey so far for newer people.
Diagnosed in Jan 11 with a 2.3cm/4cm lump in left boob near the chest wall. HER2+ Grade 3, not in nodes. Chemo before surgery was 4 x FEC and 4 x Tax. Shrunk lump enough to allow a lumpectomy. Then 18 rads and Herceptin. Worked through chemo without many problems. Herceptin which normally is mild in effects didn't like me at all and I was taken off it after four doses.
I'm very glad to be alive three and a half years later. The chemotherapy and surgery left its mark, with permanent nerve damage of varying kinds and blood pressure that never behaved properly again, but I work round it. Other than that, we'd had quite an exciting time as a family in the last few years with DH having a brain aneurysm from which thankfully he recovered after the excellent care in the John Radcliffe...and five eye operations after cataracts and detached retina. DS had two eye operations for keratoconus, and all of us are autistic. I'm also dyspraxic, have a spinal scoliosis and arthritis. Oh and I'm faceblind. None of which stops me enjoying life most of the time. (the background disability stuff all seems normal to me, because it's always been like that.) I'm a practical soul and very data-driven and logic-driven, but I care very much about the splendid folk around me, and do what little I can to share anything handy.

Keeping everyone in thoughts today for the various things you're working through.

Hello, thank you to everyone for kind messages and queries about my DM. No change as far as mobilisation and speech is concerned and she also can't read - obviously a disconnect between forming words somewhere in her brain although she understands everything and good side is getting stronger. She has been moved to a rehabilitation hospital today, so will get the specialist treatment she needs. If I am honest, I am exhausted. Had chemo number 3 today and am actually looking forward to having the excuse to slow down a bit, although that won't happen until tomorrow night so hope symptoms keep at bay until then.
Anyway, enough about me. becca your news is terrible, but I hope on your better days you can cling onto the optimistic uncertainties of the fast paced future developments. I am the opposite of you and don't want my loved ones getting all the info do that I can choose to edit - that is the control freak in me!
briteside we!come! I'm another one who has 2 weeks out of every 3 week chemo cycle feeling relatively fit. My chemo nurse suggested the odd glass of wine was a good thing without prompting. I do find it doesn't taste great for the first half of the cycle - but to be honest nothing does!
I'm still on for that meet up next year, if anyone in a central location (I live in Cornwall do not ideal) would be up to the challenge of suggesting a venue.
elporto hope you are recovering well from the op.
nelson hang on in there. The waiting is awful. Particularly after you thought the initial diagnosis was a 'good' one.
Oh yes, Back to me, I had my ultrasound on spot on liver, not a cyst which would have been the best news. Still many innocent explanations and have also been told I have a shadow on my lung. In some ways this was more scary, as mets on lung doesn't sound good, but it is also quite likely explained by pleurisy I had 6 years ago. Anyway, will now get an MRI which will hopefully tick both areas off as nothing to worry about.
speedy hope the chemo truck is beginning to drive on past.
mrs enjoy that coil facilitated holiday!

Buns you sound very positive despite having a hard time at the moment, I've been thinking about you and your mum.
Also thinking about you Becca, I hope the meeting went ok for you today. Remember, the oncs are there to answer questions, so remember to ask them.
I tried my prostheses on today as I've been going au naturel - good to see having boobs makes my belly look smaller. Also managed my first 30 day shred in ages, still sore where node clearances happened but I managed to do it!

Becca, I hope it all went well today, I was thinking of you

Buns, glad to hear your mum is improving, what a rubbish week when you are 'looking forward' to the enforced down time of chemo

Weebarra, ah! The 30 day shred! I never thought I'd miss that both Jillian Michaels, but now I really wish I was raising baked bean cans over my head every night good on you!

I am now nearly a week post-op, getting better all the time, but very numb and stiff where the lymph nodes have been removed. And also prone to random bursts of crying / ranting. My tummy has not been right since the GA - feel pretty nauseous and bloated whatever I eat, and I'll be very glad when the drain comes out on Friday, might even have a glass of wine to celebrate. We are still planning on going off to Australia in around 10 days with the support of the surgeon and my nurse, which might sound crazy but more and more I think we need a bloody break and some distance from all this, for us and for the kids. We have family there who are helping us re-organise the holiday and it's giving me something to focus on, even if I am not looking forward to the long flight...

Hope everyone else has had a good day.

Becca - I thought of you today and hoping your mom & DH got the answers to their questions.

Elporto - great news on your recovery going well and I love the holiday plans. Our family is also abroad (Not Aus but also 'down south') and we are really missing having them nearby. I am already planning a trip back to visit at the end of the treatment plan...something good to aim for! (Apart from kicking cancer's butt of course, I plan to do that first)

Smee - lol, I also have a notebook that goes everywhere with me and I have lists of questions for various doctors / job lists / random thoughts etc.

I had a full day meeting the surgeon and oncologist. My CT scan came back clear (woohoo). My Cancer is HER2 negative and borderline oestrogen positive (3/8). They have found a 5 cm area of DCIS in the same breast as the cancer, which was interesting and indicates that I will probably need a Mastectomy after all, which I am surprisingly OK with.

The plan is to start with 3 x fec and then 3 x tax, 3 weeks apart. Then surgery (Lumpectomy or mastectomy) and then 25 sessions of Rads (5 weeks of 5 days a week). The radiotherapy was surprising...I didn't realise it would be so many! The jury is still out on whether I should do hormone therapies after that.

I am also having GCSF (?) after each chemo session to boost my white blood cell count. Anyone got experience of that? Not sure about injecting myself!

I love the way I am typing these acronyms and terms, without really knowing what they mean...

The good thing (I can't believe that I ACTUALLY think it is good...but I do ) is that I have a date for my first chemo - 11th Aug and I actually go in this Friday to meet the chemo nurse and have a chat.

I am still undecided about how to handle sick leave from work but they are being very flexible, so I am planning to take the first cycle off completely. Hopefully I will feel better in the last 2 weeks and can enjoy some time with the children!

Becca, I was thinking of you yesterday too. I don't think I could say things any better than has already been said but but I wish you and all your family all the very best.

Buns, sorry to hear there's been no improvement with your DM just yet but hope you take advantage of your enforced rest coming up.

Weebarra, 30 day shred?! Now I'm impressed! Are you planning another session of it today? :)

Elporto, love it that you're still planning your trip. I don't envy you the flight but getting away will probably help you start to get your head around things. The only thing I found when we were in Ireland with family the other weekend is that it did get quite draining telling everyone my story, particularly trying to make sure DD wasn't in earshot at the time.

Briteside, sounds like you had a long day yesterday but at least now you have your plan. I am envious that you have a date for chemo -I'm still waiting for mine although it will be in the next 10-14 days. I think I'm suffering from an oversubscribed clinic, certainly if yesterday's wait of nearly 2 hours to be seen is anything to go by.

So I don't have a start date but I do know the chemo plan - EC accelerated taxol. So 4 lots if EC every 3 weeks followed by 4 lots of taxol every 2 weeks. So that should take me through to the new year.

The consultant mentioned using a cold cap during treatment to try and preserve my hair. Has anyone here tried it and has it been successful? Amber, are there any stats to sure whether it's worth trying? I'm in 2 minds - not keen on feeling cold and miserable for 2 hours with potentially very little to gain but then if there's a chance... My hair has never been my crowning glory do I'm not that precious about it. I'm not keen on losing my eyelashes though as apart from my breasts they're the only part of my body I really like!

Anyway, I ought to try and get back to sleep now although I've turned into a bit of a night owl these days

Oh, I forgot to add, I'll start taking herceptin once I move onto the cycles of taxol so I guess that means I'll be actively taking treatment until around November next year. Seems a long time away...

Minty, cold cap works for about half of people. My onc told me not to bother as my chemo would mean I lost hair anyway. Worth asking yours for their view on your own dose levels and hair

Minty, I decided against the cold cap as I couldn't cope with any more complications and I wasn't too fussed about the hair thing. It made chemo quicker and easier, but I do have the faff of growing it again now (light fuzz all over at this point - I finished chemo in May). Some people seem to have great results with cold cap, others less so. Worth a try on first cycle?.

Becca, big hugs to you for all you're going through at the moment. I thought your decision about the meeting made sense. You need to be in control of your knowledge - and that sometimes means not being around for all the discussions where others are asking questions.

Buns, I've been off the thread for a bit, but I'm sorry to learn that your mum is not well.

Elporto, I love the idea of your holiday!

Briteside, it's great you have a chemo date. Those injections are a Good Thing and it's honestly really easy to do.

I'm a full three weeks post treatment. Just loving not feeling ill. I don't want anyone even to mention cancer to me, but it's impossible of course as people want to know how you are. My bil talked to me about how unlucky my family has been ( we have had a terrible few years). For some reason it made me want to hit him and got me reflecting on the difference between empathy and sympathy (empathy good to receive; sympathy a bit close to pity and very distancing).

minty I wasn't even offered a cold cap for my treatment, I am on TAC, which is slightly different to FEC/T but the C and T are the same. Success rates not great, quite unpleasant apparently and you have to wear it for longer than the chemo session so prolongs treatment. Also, and please wiser women correct me if I am wrong, wouldn't help with eye lashes as the cap works by cooling the hair follicles and the cap wouldn't be on your eyes. Don't know if a cooling gel mask would help with that. Someone on here, possibly amber recommended sipping iced water to help with mouth problems. I do that and have had no ulcers or mouth issues apart from taste buds and haven't lost those completely. Also, I am in chemo 3 and not lost eye lashes or eye brows yet, hair mostly went in chemo 1. What seems to happen is that no new ones grow, so haven't had to pluck my usually hirsuit brows and both brows and lashes are thinner due to natural wastage but hanging on in there. I think they might be last to go and first to come back. I have some very natural falsies anyway so will start using them when I need to.
I won't lie, Losing hair was a low point. I had mine shaved off as soon as it was obviously on the move. This allowed me to donate it to the little princess charity which makes wigs for children and also meant the awful process of it falling out in endless handfuls was not prolonged. I still have a tiny bit of stubble- dread to think what that would look like if it was actually strands of hair.