All the fives... Tamoxigang cancer support thread 55

[WhatWouldLeslieKnopeDo]

Welcome newbies and oldies to our 55th thread!

Our previous thread is here.

If you have any sort of cancer please feel free to join us. We are always happy to offer a hand to hold if you're waiting for test results too.

There are no stupid questions here, and there will usually be someone who can answer, or point you in the right direction.

Pepper it is really rubbish to get results that you are not expecting. I was in a similar situation when I found I had invasive cancer and positive nodes after being previously told that only DCIS was present on the biopsy. Everything changes when you then discover that you need chemo and further surgery or rads. My results appointment was just awful and the doctor had to call me back the next day to talk again because she realised that I was numb and hadn't taken everything in. I think it's best not to think too much about the stats. Just take each treatment one at a time. It's a long journey and not the one that you thought you would be making, but you can do it. I worked until my surgery because it kept my mind occupied but I haven't worked since.

It's good that you have been offered scans. My hospital doesn't offer these routinely. When I asked about them I was told it was unlikely that my cancer had spread. I found the consultant dismissive but maybe she thought she was being reassuring.

I had the ANC and I found recovery quite tough. I had poor motion for weeks after and some cording. The advantage of the ANC is that you find out how many nodes are affected. In my case my they took 2 nodes at SNB and both were positive. At my ANC there were no further positive nodes so that was good to know. The risk of lymphodema is higher with ANC than rads but both have a risk.

Thanks mysillydog that's really helpful. I'm still struggling after my SNB though that's partly the dressing allergy. They did explain the lymphodema risk but as if the 2 options were the same so I'll have to ask again. I'll only choose the surgery if it's a much greater benefit tbh. Won't the chemo kill all those caner cells anyway?. It's like landing in a different planet really.
You must have been so shocked if they'd said it was DCIS then changed to invasive, that's tough to take in. I must have asked the same questions about timelines about 8 times today!
The scans were booked to help me decide as well as to inform the chemo - they weren't presented as optional...
I don't know anyone IRL who has or had breast cancer so this thread is a lifeline (though my BCN is wonderful).

Hi rover, I finished docetaxel 12 weeks ago (had 3 rounds of FEC since) . My nails were fine and I thought I had escaped lightly after the fourth dose. However, the ridges appeared gradually over the following weeks as the nails grew, and the top part above the ridges started lifting off. The chemo nurse did say they would get worse before they got better.

pepper, it's interesting that you were given the option of radiotherapy for a postive sentinel node biopsy. Mine was positive too and I have had chemo first but was only offered axillary clearance. Were all the nodes sampled positive? I had 3 sampled which all contained cancer.

Hi fresta, I think I just had one taken and it was positive - the ultrasound had shown clear so they only took one as a precaution.
Apparently, 5 years ago it was standard to have the full axillary clearance for a positive test, but they are reviewing the guidelines and we're in a grey area at the moment where the benefits of ANC v rads are being weighed up - unfortunately this means they can't make a recommendation. I can delay the choice till after chemo though - so do you have your ANC surgery booked for after the chemo and before the radiotherapy? (as you're so close to finishing chemo )

Yes, I've got a date for a WLE and ANC at the same time. My ultrasound was clear too but they found a 1.5cm tumour in one of the sentinel nodes during the biopsy. I am surprised they are relying on the ultrasound results as they are notoriously inaccurate for assessing cancer in lymph nodes. I thought it was standard to sample at least 3 nodes for a more accurate sample. I am going to ask about options for just radiotherapy at my next appointment, although having all 3 nodes positive makes me wonder how many more have cancer and it will be impossible to tell if there is any lurking in there even after chemo and radiotherapy.

Hi all, hope everyone is ok and sending my best wishes to those who have had test results back or are having a bad day x x

I have just had bloods taken for calcium and the dreaded ca125 test and scan booked for 29th so another anxious wait for me you think I would be used to it by now 6 mnts and still no clue what is wrong , anyway I have a busy day today work and passports to sort out.

Take care everyone x

Sorry you had unexpected news Pepper.

Lowzil- the waiting for scans and results is really hard. Thinking of you.

Nails- the chemo nurse at my hospital told us all to wear really dark nail polish for the tax to try and stop them from falling off (something to do with chemo reacting to light). I managed to keep my nails although after the last tax they did start to lift. The ridges were horrid but eventually grew out. I hated the feeling of getting water under the nails!

Off out so flying visit. Will read properly over weekend. Love to all.

Dear all thank you for the welcome and just catching up.
Pepper sorry you had a crappy appointment today it's another thing to get your head round and I think it's easier when you don't have to make a decision and it's presented as the best option for you.

Elmindarina,sorry you have joined the "club", I think things get more manageable when there is a treatment plan. My children are 10 and although they knew i was back and forward to the hospital with a sore booby we didn't say anything more until we had a plan.

I am back tomorrow for my post surgery results and am cakking myself and just hoping it's simply onto radiotherapy.

Hugs to all x

I'm off today for an aromatherapy massage. My cancer service offers 4 complementary therapies for everyone undergoing treatment. I'm not really a massage person but hopefully I will enjoy it, and I'm also collecting my wig.

Yesterday dd had a sixth form interview but an hour before it I felt really tired and shaky. I took my temperature and it was 37.7, so a bit close to the 38 which I have been told to contact the oncologist or go to A&E. I couldn't risk taking her or sending her on her own - she would have been needed at home to look after dd2 if dh needed to drive me to hospital.

After a few hours my temperature dropped down without taking paracetamol so all was well. But it's a bit rubbish when cancer effects the family. The school was dd1's last choice but it is very nearby so she applied. I emailed the teacher she was due to be interviewed by explaining the circumstances so perhaps they will reschedule.

Good luck helly today. Hopefully it's just rads but whatever comes up we will be here for you.

Good day all. Wishing. Everybody awaiting tests and the like good news.
mysillydog, i was told NOT to take paracetomol if I had fever because it would bring the fever down but not treat the cause which could be an infection. Do be careful.
Take care all.

helly best wishes for today, fingers crossed for rads.
mysillydog that sounds lovely (the aromatherapy not the temperature!) I was just reading the booklet that covers that - we get 4 treatments as well apparently here, I hope you are pleased with the wig, and DD gets to reschedule her interview.
lowzil how long after your scan will you get your results - quickly I hope, the waiting is pants (as DS1 would say).
fresta - last chemo today?!
Hello everyone else have a good day.
I've just been reading through the thread - can I ask what TM stands for??

No I would never take paracetamol for a temperature without seeking medical advice first. I just removed some layers and waited to see if it went up or down. Thankfully it went down.

When I had febrile neutropenia on my last cycle I had the triage nurse from hell in my local A&E. After noting that I had not attended A&E for over 20 years, that I was on chemo and had spoken to the on-call registrar at my cancer hospital who had told me to go to A&E, she asked why I thought it appropriate to attend with a only slightly raised temperature when I hadn't first tried paracetamol at home . She then triaged me to routine and left me in the waiting room with people coughing and vomiting around me. After 2 hours of me crying dh collected me and drove me to a teaching hospital (linked to cancer hospital) where they whisked me in straight away, took bloods, started me on IV antibiotics and within 30 minutes established that my neutrophil count was 0. I heard the A&E doctor on the phone to the local hospital asking for an explanation of why they had failed to follow national protocols. He was not happy at all.

Pepper TM = tumour markers. These are obtained via a blood test (CA153 I think for breast cancer). Oncologists look at these results and scan results to see how the cancer is responding to treatment.

Mysillydog, i am flabberghasted

I'm home, last chemo completed. It feels strange, I feel I should celebrate but can't think how! A glass of bubbly would be the usual way, or out for dinner, but seeing as I already feel weird and can't drink those things are not on the agenda. It was nice to say goodbye to the chemo nurses, although in a strange way I will miss my 3 weekly visits as I was just getting to know everyone. I took them all some cakes as a thank you. Roll on next weekend when the side effects have subsided.

mysilly hope you are feeling better and your dd can get her interview another time.

lozwil and helly waiting for scan results is the pits, hope they are all ok.

Royal, how is the radiotherapy going? Have you got much longer to go?

Fresta Congratulations - time to buy yourself a present!

DH just came home with flowers and a bottle of Hendricks, something to look forward to in a week or two, best stock up on cucumber!

That's great fresta :) enjoy the Hendricks

Helly how were your results today ?

Hope everyone has a good weekend x

Fresta great landmark . Just a week to get through the side effects.
I've been alcohol free on chemo and haven't missed alcohol at all but I'm looking forward to when I can enjoy things like chocolate and wine again.

My aromatherapy was indeed lovely. I also get four treatments and even dh can have two. I keep smelling mysel

Hi everyone - just thought I'd drop in and say hello as I haven't been on here for some weeks, mainly through not being so good. However, things have picked up - my liver cancer is under control and I am finally eating well due to steroids (what a joy to rediscover food again!!). I am allowed to eat the highest protein, fat, etc. as possible due to trying to stop losing weight - so anything goes. Have just discovered avocado - not sure yet though!!

Am still just 'keeping going' but am not as strong as I was. Still able to cook (or go down the chippy!!) but, to be great upset, have completely gone off my cups of tea!!

Take care everyone - will be in touch soon and wish you all well.

Yippeee fresta! So pleased for you.
I am halfway through the rads. I have another 14 to go. Skin reactions as expected but thankfully nothing serious.
Waving to everybody else.

Whether it's lovely to see you, and I'm glad you're doing OK at the moment. Good news about the cancer being under control and the steroids. Sorry about the tea though! :)

fresta congratulations

pepper sorry you had a difficult appointment. I hope the shock is wearing off today

lozwil I hope your busy day at work was a good distraction. Good you've got an appointment date and not too long to wait. I hope you'll finally get some answers, or at least rule out more nasty things!

helly I hope your results were OK

Waving to everyone

Congratulations fresta I finished my last chemo just over 2 weeks ago and it was a strange feeling knowing that part of my treatment was over. Looking forward to hopefully feeling a bit more human!

Hi there, thanks for new thread. Gave up MN for lent so sorry not to be engaged and supportive. Given up giving up. So waving and support for others.

Query from me. I had 5 1/2 weeks radio to shrink an inner ear tumour. Treatment stopped mid Jan. I'm still exhausted , nauseous, and unless I have 14 hours sleep and 5 pints water, run a low grade fever. Actually, even if I do those things, I still get the feelings, aches etc but It's just then the shivers, not a raised temperature.

Is this normal and when can I expect it to end?