Lacies, elephants, potato-based snacks... Whatever we are, this is our 57th CANCER SUPPORT THREAD

[WhatWouldLeslieKnopeDo]

Welcome everyone to another cancer support thread. This thread is open to anyone with any sort of cancer. And we have plenty of hands to hold if you're undergoing tests for cancer. We are always pleased to wave people off with an all clear, and there's plenty of room here if the news isn't what you hope for.

So don't be shy! We are a friendly bunch and there's probably someone who has been through something similar. Nothing is off limits here. Scream, shout, swear, stamp your feet...

I'm sorry that anyone needs this thread, but very glad that it's here. Cancer is shit. But it's a little bit less shit when you have people to share it with.

Our previous thread is here

Worried I too had a small, early stage cancer (10.5mm) that was on the inner upper part of my breast, almost on my breast bone. I was worried about chest wall involvement but it was was completely removed. I also had an area of high grade DCIS surrounding the invasive tumor, and this was all removed too. I decided to have a double mastectomy due to a strong family history of BC so no radiotherapy required, and I am now 3 sessions into 4 chemo cycles that was recommended as an 'insurance policy' due to my age (39) and the fact the cancer was a grade 3. My prognosis is excellent and I plan to be around for my 4 kids for a long time to come.

Try to take each day and each appointment as it comes, you can't eat an elephant in one bite! Easier said than done I know

Hope telling your DC went as okay as possible.

Jo x

Minty - thanks for the answers to my questions; I like to get my head round things before I see the consultant so that I'm prepared.

Chewing - good news re your last chemo. Can I ask why you needed to inject yourself? I'm hoping that's not something I'll need to do as I have a bit of a phobia about needles!

Is that the end of your treatment or do you move onto the next stage now?

Sorry, I am trying to go through the thread to work out who is who etc - I need a spreadsheet to keep on track.

Worried - I am two weeks ahead of you on the conveyor belt and it has been hell I have to admit. The not knowing and imagining the worst is inevitable. I have two lumps on the same side (one is about 2.5cm, the other 1cm) which are Grade 3 and are HER2/ER/PR positive. (Yay, a full house!)

On top of all that my Mum has just started chemo for secondary liver cancer and I dreaded telling my parents about my situation.

I have my appointment with the oncologist tomorrow for my treatment plan but have been advised already that it will be chemo followed by surgery and probably radiotherapy. I had an MRI today as they need it to "plan surgery".

Just take it one day and one appointment at a time - having been fortunate enough not to have required many GP appointments/medical treatment over the years it is a bit of a shock to the system to have appointment after appointment now but have resigned myself to the fact that this is how it's going to be over the coming months.

It does sound as though yours as been caught very early which is good news.

I've just made up a folder to organise all my "stuff" to save me rummaging around during the appointments for my scraps of paper with questions on- it's got dividers and everything. Quite therapeutic.

cookie my white blood cells were low and it meant that chemo kept being put back a week. The injections contain GCSF which stimulates the bone marrow to make more blood cells. I move on to the next stage of treatment now which may be surgery or radiotherapy - my plan has been constantly changing from the start due to the complex rare type that I have.
It does feel like a conveyor belt of appointments but you soon get used to it. Once you have a plan you will feel more in control. Sorry to hear about your mum

Cookie I was her2+ er/pr+ as well, and my lump was 23mm so we are very similar. This time a year ago I had just had my 2nd lot of chemo. I had 7 lots of chemo in total 3 x fec and 4 x docetaxol, herceptin and perjeta. Chemo finished early March and surgery was done mid April, 20 sessions of rads followed and finished at the end of June (I had a slightly longer gap between surgery and rads due to an infection). Herceptin continues every 3 weeks and once chemo had finished then I've had all the rest by injection into my thigh. I now have 2 more herceptin to go and then just letrozole or exemestane as Tamoxifen doesn't agree with me, if you have any questions I can help with please ask.

Bloody hell cookie ❤️❤️❤️
I don't go to docs much either, apparently it's estrogen receptive ??? Is that right is the good or bad?
It's invasive Ductal breast cancer
On mammograms 15mm on ultrasound 5mm 101mm from nipple
It's hard telling parents isn't I t xxx

Checking in - glad you made it to this board worried wife.
I go in for round 3 chemo tomorrow.
I had some hypnotherapy this week - did some visualisation techniques which I'm hoping will help me get through tomorrow.
Found out today that my 4th chemo is going to be over 3 days - I'm going to miss my DD4 first Christmas school show I'm really upset about it. These little bubbles of niceness are what keeps me going!

Also I've checked through my letters and I can't see any measurements anywhere - I don't know how big my lump is. Should I know? Feel a bit silly not knowing.

Waving to everyone x

Worried, oestrogen receptive is the most common type of breast cancer and treatment is very standard and good. I think it's tricky to tell the size of the offending lump until they get in, mine looked like 17mm but actually it was 11mm when they got it out.

I hope your two dc are ok. Mine were 17&20 and old enough to be very worried and fully aware of what was going on. We told the school for dd2 and they were great with her.

Hi worried, sorry you're joining this thread but I hope it's a good support to you. I think Cookie and I are the newbies before you, if that makes sense. I live away from my family, so I got my brother to tell my mum for me. I didn't want to tell her over the phone or for her to be by herself when she found out.

Rocket, that's rubbish about your DD's first Christmas show. I agree re 'bubbles of niceness' - that was one of my strategies after DP died, make sure we had good things to look forward to. I asked the radiologist how big my tumour was, there wasn't anything on the biopsy report, but there will be on the pathology report post surgery.

I had my first meeting with plastic surgeon today to discuss reconstruction. He was truly lovely, but it is weird having someone grabbing your fat bits to size them up to see if they can make a breast out of them. I have decided to have LD flap reconstruction, and he's going to do a bit of work on my 'good' breast to even things up - and lift it up. I am that shallow to be pleased that I will come out of this with perky boobs. Lesley, another incidence of making the best decision at the time, but I'm content with this one.

I am a bit worried that surgery won't be for between 4 - 6 weeks, and I don't know if there's any hormone treatment or anything before. (Even though I'm secretly a bit pleased that it looks like Christmas won't be a total write off.) I will ask next week about pre-surgery treatment when I go for the results of tomorrow's CT scan. Surgeon today said they wouldn't risk my wellbeing, and doc had previously said that 'it' was growing slowly, but as they've also told me it's HER2 and provisional grade 3 it's hard not to think that the blinking thing is spreading.

Wave to everyone else.

I unofficially got the all clear today. It has to be discussed at the MDT early next week but everything came out, clear margins and low grade. No radiotherapy for me (phew) but 6 monthly mammograms to keep an eye on things. Yippee. Hoping for such positive news for others at the early testing stage. Dora

Excellent news Dora.
Rocket have you asked if your chemo can be moved so you can go to the play? My hospital are normally quite accommodating about shifting dates so patients can have a life outside of hospital appointments. Do you know why they want you in for 3 days? I know some hospitals do tax on one day and Herceptin the next. Is the other day just for bloods?

I had herceptin 11/18 today, so the end is in sight. I don't like going to the chemo day centre every 3 weeks. I accepted it when I was on active treatment but it just seems excessive now I'm back to normal life. They re-ran my liver function tests which my GP had said were a little elevated. The nurse said that one of the results was a little high but not concerningly so. I asked for a printout and she said yes, but somehow I managed to leave the hospital without it. Oh well, never mind, my GP said she would repeat the tests in January. I was rather hoping if my bloods were normal to skip that but I guess not.

Delighted to read your positive news Dora.

royal fingers firmly crossed for you. And I hope all the football keeps you distracted for the next few weeks!

mrsrhod I'm glad you're getting a bit of a break from medical stuff. Hot flushes sound difficult though

Worried I hope your son is coping with the news

rocket I hope the hypnotherapy helps

Dora excellent news that's the sort of thing we like to hear!

Flippy there have to be a few perks (!) to this whole palaver. A woman I me at chemo was telling me how fab it was that she doesn't have to wear a bra now she has implants!

I'm having my antisickness stuff at the mo. Just waiting for the chemo drugs to arrive!

Sorry forgot to say fingers crossed for your liver blood tests Mysillydog neeeearly there. The regular visits do sound rather a drag though.

Also rocket do you have to be in the hospital for three days? One of my chemo drugs is given over three days but I have a little pump that I wear home. Then the district nurse comes to disconnect me

My next chemo is over 3 days but I chatted with the nurses today and they've arranged it so I will get to go to my daughters show!
Herceptin on the tues, pertuzamab on the wed after the play and then doxactel on the Thursday. I was panicking that I would need to wear the cold cap every day - but only on the Thursday. That's a relief!!
Although I was told I may have 4 rounds of the next type rather than 3 - depending how it's going
Home now after round 3 - I felt really cold today despite heated blankets etc.

Glad you're getting to see your daughter. I think as mysilly said teams can be quite sympathetic to the fact that life goes on and we need to not let cancer get in the way all the time.

Be prepared to get thoroughly bored on your herceptin day as you have to be monitored for 6 hours after the dose in case of an allergic reaction. When I had my first 1 two years ago I was so angry with everything and tired from chemo that I curled up on a chair and hid myself completely underneath a blanket which, looking back, probably didn't help the team look out for a reaction!! Despite having had the full year of treatment without a reaction when I started on it again this Oct I had to go through the whole 6 hours of monitoring again
Chemo again for me this eve. I have a cold at the moment but my bloods must have been fine yesterday. Will be disappearing off into the land of side effects and chemically induced sleep soon!

Waves to everyone, hope you're all coping ok

Hi girls I haven't been on in ages, I got the all clear margins also dr called me on Monday, I feel like I've won the lotto,I saw him yesterday wound healing well, I will be referred to an oncologist and having radiation after Christmas but I'm happy with that.i had Paget's disease and 3to 4 cm od dcis I was devastated afraid but now I'm ok thank you for all the support I got here I will probably have little break now and come back here for some tips during radiation if that's ok

bobdylan that's good news :) of course you can dip in to the thread whenever you want or need

minty I hope the chemo side effects are gentle

rocket great that you'll be able to go to the play! I hope you warm up soon and feel OK otherwise :)

Today is obviously the day for chemo. I had mine too. And I wasn't the last one out! nine hours today so quicker than some. I'm exhausted and feel a bit sick. An evening on the sofa for me.

I hope everyone has a good evening!

Wow leslie that's a mammoth visit! Hope the sickness eases and you get some sleep tonight

rocket hope you're feeling warmer after your dose today

to Leslie hope you managed some sleep and the SEs are not bad.

Afternoon lacies - just thought I would update after appointment with oncologist yesterday. He was very nice and extremely positive which made me feel better. I'm getting pretty much the same chemo as rovercat eg 3 cycles of FEC and then 3 cycles of Doxywhatsit with Perjeta and Herceptin. Didn't even have to ask about the Perjeta, he just listed it.

Am going in this afternoon to have a "marker" inserted as apparently the chemo may shrink the small tumour (may even disappear) but they need to know where it was so that when they do surgery they can clear the area.

Next Tuesday I am in for ECG to make sure heart is OK before they start the Herceptin and then they were talking about chemo starting next week or early the week after.

DH very embarrassed as my parting question was "can I still drink wine during treatment". FFS I need something to look forward to!

rovercat yes we do seem to have a similar diagnosis and the treatment seems to be the same although they have said 6 cycles rather than 7.

Dora brilliant news, hope you had a large glass of something fizzy to celebrate.

rocket pleased to hear you can go to your DD's play.

Unfortunately I do have to cancel my long weekend away mid-December which I was really looking forward.

I have a quick question which I would like to put out there - I asked if the cooling cap would reduce the effectiveness of the chemo and the oncologist said that there was a 1% chance of getting cancer in the head area (never heard of scalp cancer but I guess those pesky bastards get everywhere). I'm now not sure whether to try it or not as, for me, any percentages going towards not getting it back count. Has anyone else heard/read anything on this?

Cookie they don't use cold cap on secondary patients for that very reason. I'm not sure about scalp, but certainly skull mets are possible. It's a difficult decision and I'm wary of upsetting anyone. But I think for me personally that small risk would not be worth it, especially as cold capping always looks such an unpleasant experience. Hair loss is no fun. But it will grow back as soon as you finish chemo, sometimes before depending on chemo types. But it is a very small risk so if you find the idea of hair loss very upsetting, and can face the potential discomfort of the cold cap, then obviously it might be worth it. Do you have a BCN you could talk it through with? Good your treatment plan is coming together :)

Thanks minty and royal I slept really well actually. All snuggled up with my chemo bottle! (Apparently they're sensitive to temperature so nurse suggested keeping it in bed during the night.) Sickness is not too bad today :)

I hope everyone has had a good day

Hi Cookie glad to hear your treatment plan is coming together. I have no idea why I had 7 cycles rather than 6, I asked my onc and he said 'because I think you need 7' and that was it. He then grinned and said I could have an 8th if I wanted but I declined . Didn't cold cap mostly due to headaches which I think can be a side effect and when I was younger I used to get terrible migraines so decided against for that reason. I had a marker put in and it was definately needed as the chemo did its job and from dose 4 on my lump went from 22mm x 23mm to 17mm x 9mm! A pity you have to cancel your weekend away but hope you have a glass of something nice this evening!

I hope that the quietness of the thread over the weekend means that everyone was doing nice things. Leslie, hope the chemo SEs are not too bad. Cookie, you didn't say if the onc agreed to your wine request?!

I am back at the hospital tomorrow morning for the results of CT scan - I won't lie, I am petrified that something else is going to show up. But there will hopefully be some indication of a treatment plan, although the MDT meet on Wednesdays. Also back to the plastic surgeon for further discussion this week, I think this is where I have to commit to the type of recon.

Rover, I know you said that tamoxifen didn't agree with you, do you mind if I ask, when did your hormone treatments start? I want to ask about this tomorrow, because if I'm waiting 4 - 6 weeks for surgery, I wonder if they can at least start some treatment before then.

Flippy good luck with your CT scan. I hope you will get the results quickly, and that they are reassuring

I had a nice weekend thanks :) chemo SEs set in yesterday afternoon so I retreated to bed! Should probably rouse myself to get on with the day now... I hope you enjoyed your weekend too!

Have a good day everyone

Morning

Hope everyone had a good weekend.

I'm afraid my weekend was spent braving the shops trying to get the Xmas presents that I know I can't get online. So if you happened to be standing next to someone muttering under their breath about "fecking Christmas songs in November" and other such profanities then it was probably me!

Then yesterday some chopping trees down with DH as I guess I won't be up to heavy duty work once the chemo starts.

Flippy good luck with your scan, fingers crossed for you that it is completely clear.

The onc said I would be OK with a glass or two of wine as long as it wasn't in the few days before or after the chemo but I assume I probably won't feel like it then anyway.

I was planning on having the cold cap (particularly after seeing rover's amazing head of hair) but after careful consideration and a chat with some close friends and family over the weekend I think I will just have to brave the hair loss. The BCN said that of those who cold cap, 50% will still lose their hair and whilst I could put up with the discomfort of wearing it I am not sure the 1% risk is worth it.

Hopefully will hear this week when the chemo starts - just want to get on with it now.