**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!

Boobz, I had chemo first without a node biopsy. They were quite confident from physically examining me and looking at the ultrasound that the cancer hadn't spread to the nodes.

However, before starting chemo I had a CT scan and bone scan which both came back clear. I have yet to be given a stage to my cancer (9 months post diagnosis) and whilst part of me would like to be given a number the bigger part of me knows that is just a number. The scans and surgery have all shown that whilst I had a very aggressive tumour, it hadn't yet spread beyond the breast. That's the most important thing.

Remember that if they can see the chemo working on the tumour (I had ultrasounds every 2 cycles to check) then it will be working on any rogue cells that may have escaped too.

Marshy, sorry about your wobble but glad the sensible you has come back!

Wallaby, I was definitely in the weight gain camp during chemo. Certainly at the end of the first week when the nausea had disappeared the steroids had me eating for England.

If you haven't been given it yet ask for EMEND for the sickness. It never completely got rid of the nausea but I stopped retching and got down to morning sickness level which I could just about tolerate.

Hope you're starting to feel a bit better now

Boobz, have they confirmed that you definitely need a mx or could they do another WLE to get out the remaining lumps?

Hmm interesting minty. I am so OCD, I think not knowing for sure what my stage is will do my head in. But if the scans came back all clear for you, and the nodes weren't enlarged (mine aren't either) then I can start to understand why they don't always do it.

They are doing another core biopsy on the lumps on Monday (if my boob has recovered enough) and if they are cancerous, then I will have a mastectomy as I have very small and empty breasts post BF-ing 3 kids, so if once you have removed those 2 smaller lumps and gone back in for an excision of the margins on the original bigger tumour, I wouldn't have much boob left and would look very asymmetrical. So I think I will only be able to conserve the breast if the biopsies come back negative.

I am going to be test for the BRCA genes and if that comes up positive, I will have a preventative double mastectomy and reconstruction anyway. The pathology from my diagnosis all points to me having the faulty gene so will get tested next week. Chemo to start the week after that.

Did any of you get to see your full pathology reports? I want to know things like whether I'm basal-like or non-basal-like, as well as status of being p53-positive or negative/EMT features/B-cell & IL-8 levels/M2 Macrophage phenotype etc - did you get to discuss these kinds of details with the oncologist - did she show you the pathology report?

Hi minty, how are you feeling after your first week of rads?

I've just made an appt with The Haven in Leeds for next Thursday to discuss possibly trying some acupuncture for the hot flushes. After my new GP offering red clover, which is the wrong thing for me, or antidepressants which can control them I've decided to enquire properly about this option.

Lily, hope you got good news today.

Yes Lily - thinking of you.

Mrs, I'm absolutely exhausted. It's too early to to be down to the rads, more I think the last 9 months have finally caught up with me. Haven't had my dose for today yet as it's not until 6.20 so I hope I don't get stuck in too much traffic. Although the hospital isn't too far away, by driving myself this week I've had to allow time to find a parking space. Of course I've got one straight away each time so far so have ended up being too early. It's a 2 hour round trip (inc the treatment time) so I think I might start taking up the offers of lifts from next week so I won't have to be out the house so much

I will be interested to hear how you get on with the acupuncture. Might have to try it myself if you think it helps

Boobz makes sense to be thinking along the lines of mx. Let's hope they get definitive results either way from the biopsies. As to getting a full path report, I thought I would want to see mine (I can be quite curious!) but again have just gone along with the basic information that they've shared. When my DD was born she had major surgery and stayed in hospital for nearly 2 months afterwards. When she was in the high dependency unit they weighed her every day and in time I found that when I went in to visit her, after checking she was Ok, the first thing I did was to check her weight chart. I became obsessed with how many grams she had gained, or worse lost. So I know that for me, sometimes I can have too much information and it does me no good.

Again, when it came to having chemo, I never got to see my blood results (taken the day before each cycle) whereas some hospitals routinely give them out. I just accepted that if they were happy to stick a needle in me then I must have been well enough to take the dose!

But of course we are all different and if you want to see your report then there's no reason why you can't ask for it. I think they do have to let you see.

Lily, another one thinking of you and wishing you good results

Sitting in waiting room with a coffee waiting for scan results ... I'm early and Oncologist is running late as usual.
Rare occurrence - both DSs are at home tonight (for the last 3.5 years they've rarely been on the same continent) so we are out for a celebratory dinner.

Sorry to hear you are exhausted minty - I think everyone on here sounds so strong - everyone doing an amazing job of just getting on with life in spite of the disease.

Good luck Lily.

Before I go - a slightly ridiculous question: am running out of room packing suitcase as I am leaving for London tomorrow for at least 2 weeks... do I leave the hairdryer behind because one isn't going to need one soon? How soon after Chemo starting does a hairdryer become obsolete?

2-3 weeks after the first dose seems to be the norm boobz.

Minty, I would definitely accept any offers from drivers. You're probably only going to get more tired and as you say, finding a parking space just adds to the stress and time out of the house. Hope you're getting your parking for free too.

DH has gone to see his brother who has been having treatment for duodenal cancer, he's had bad news this morning, just waiting to hear exactly what that means.

lily fingers crossed for you.
boobz I had my BMX before chemo with the sentinel nodes done at the same time. The decision to have chemo was made after the node results as they were affected. I have always assumed that the order of treatment was due to the preference of the surgeons in the SW, but it could be due to the nature of my tumours, numerous and lobular and so the Breast couldn't have been saved even if the tumours shrunk. At the time my right hand mx was elective. My reasons for this was partly aesthetic but mostly because my current Cancer was caused by the treatment for lymphatic cancer as a teenager. As I had the same treatment across both breasts it made sense to me that both breasts were at risk. My consultant wasn't convinced but went along with it, as it turns out it was one of my most sensible decisions as I had DCIS in the right Breast and would have had to go through this whole palaver again. I am very thankful that I had my sister with me who knew my preference and kept me strong when the surgeon tried to persuade me against a BMX. I lost my hair on day 17 of treatment, exactly as predicted. I had it cut and shaved off as soon as it started to drop. I wasn't bothered about path reports but I sm sure my BC nurse would have gone through it with me if I had asked.
mrs please keep me updated about the acupuncture, if it works I will definitely look into having some.
minty 1 week down. Are you having 15 sessions or 20? I had quite a trip for mine but it was just before Christmas so I was around town a lot anyway so didn't seem too bad, accept all the help you can get.
It is my DD1's 16th today. How did that happen? Takeaway and glee tonight and the hosting hysterical teenage sleepover tomorrow.

Lily hope the scan results were good and that you have a lovely meal out with your DSs, must be lovely to have them both together

Buns happy birthday to DD1 hope you survive the sleepover tomorrow

So glad it's Friday :)

I'm going to The Haven in Leeds next Thursday for an initial consultation, I will report back.

Very bad news for dbil, DH devastated. Fucking cancer.

Really sorry to hear that MrsRhod :(

Mrs' I'm sorry to your news. F*ing cancer indeed, it affects far too many folks these days

Buns happy birthday to you DD - sweet 16! Hope you're having a lovely evening.

So 5 rads down out of 20 :). Feeling a bit stingy so will be double dosing on cream this weekend I think. Loads of parking space tonight and appt ran to time so didn't have to top up my 1 hours free parking

Have a good weekend everyone

mrs utterly grim. Fucking cancer indeed. Hope you are ok.

Urgh. 8+ days post FEC. About 8 last night I thought "ooo, i do feel rather shit!" Took 2 paracetamol. 20 mins later noticed sore throat and a bit warm. Cue ringing ghostbusters (aka christie hotline) and here i am in hospital, had 2 lots of iv antib's and my neutrophil count is 0.1. Have to stay in for about 3 days and if it drops and lower, transfusion time. God, i really do feel quite shit !

I hope you feel better soon wallaby I used to like to think during chemo that however awful I was feeling, so were any rogue cancer cells but even so, hospital isn't exactly a fun place to be! I recommend reading AIBU threads, or Classics, to pass the time.

mrsh, mrh and wallaby for you all.
lilymaid hope scan results were okay and that you've had a lovely meal out.

Chemo yesterday for me, all fine. Very tired and a bit tired afterwards. Luckily DD (6.5) was picked up from school for a play date. I went to bed soon after her (7.45), slept to 4am when I awoke ravenous but too tired to make anything (DH is abroad on business) so had an Ensure milkshake and went back to sleep. DD bounded into my bedroom 7.30am but fortunately I am full of energy again even before I've taken the steroids so I must have slept very well. So today I take her to Ikea so she can "play house", I can shop a bit and we can enjoy meatballs and chips.

I had such debilitating mouth sores and ulcers last cycle because I forgot to take my special mouth washes and tablets. This time round I will be strict with myself!

wallaby sorry to hear your in hospital, and hope your out soon.
bosh enjoy Ikea: very brave!
mrsrhod sorry about your dbil

foofoo we're going to Ikeain the morning then early lunch there so fingers crossed we miss the big crowds! I've never been to Ikea on a weekend .

Well, my scan showed no areas for concern though my tumour markers are up. This means that I may have to change to an intravenous chemo in June - begins with E ... And suffer the cold cap to preserve my getting towards normal hair.
Oncologist had forgotten to request my Portacath be removed at the end of chemo in October 2013, looked shame faced! But it is better to have it as it has been used for my blood tests and scans and is much better than them trying to find a vein every time. So I had not reminded him. It doesn't show when I am dressed and is only visible as a small scar. Recommended for anyone having chemo.
Meal out with DSs very nice. From next week DS1 will be working 15 mins walk from my office ( better than 9,500 miles away) and when DS2 has finished his MSc he will probably be in the City, so near at hand too.
Can I add a br Cancer for your BIL, MrsHod.
Will put in my bit on other queries when I've finished sorting out DS1's belongings (many of which have been abandoned here since he went abroad 4 years ago!)

Yay for good scan results lily and for having DSS nearby. How are you feeling re the change in drug regime?

Wallaby I hope you hospital stay is short and sweet.

I'm being a domestic goddess today, my scaled down version anyway, then off out to sing in a concert with choir followed by curry with friends which will be a bit of a challenge for my slimming world campaign.

Hoping to be able to have a chore-free day tomorrow.

Hope everyone is enjoying the sunshine

Good news about the scan lily though shame you've got to have a change of treatment

Oh no wallaby, well done for spotting something was wrong and getting it sorted though, always the earlier the better

Bosh glad you're ok,how was ikea? Did you spend a fortune on things you didn't really need?

Marshy enjoy the choir and evening out, I'm also out tonight with friends so looking forward to that

Hope everyone's enjoying the sunshine

Yey for good scan results Lily though boo to more chemo. Glad your port is still in. I have one and with a bit of lidocaine cream on before each needle it's no bother at all. I see the nurses poking away at people's hands to find a vein and I am so thankful for my easy port.

IKEA was great. Came back with a new rug, door runner, lampshades and various boxes and bits and bobs for DD who also had a grand time "playing house" while I relaxed on the various beds and sofas :) Then meatballs etc for lunch then home. By the time we left the place was packed so I'm glad we went in the morning & early lunch.

I was shattered coming home so had a nap while my DM looked after and fe dinner to DD. I'm rejuvenated now so a trip to the Southbank & National a Gallery tomorrow when DH is back from his business trip.

I have a chemo pump for two days after each fortnightly chemo session so a quick trip to the hospital tomorrow late afternoon for disconnect then I will be free! Hurrah!