CANCER SUPPORT THREAD 58 - New thread, new year, but the lacies are still here! Please join us if you have any sort of cancer, or are waiting for test results

[WhatWouldLeslieKnopeDo]

Happy New Year! may 2017 bring health and happiness to us all

Welcome to oldies and to newbies. If you've just been diagnosed then this is the place for you. And if you're waiting for test results then please pull up a chair. We will hold your hand while you wait, and hopefully we will be able to send you on your way soon enough. If it isn't the news you hope for then we will be here for you.

Our previous thread is here

Following on from royalmama's suggestion (see, you're not just famous for typos!) I have compiled some of the excellent advice from the previous thread and I will post it below. I've divided it into sections to make it a bit more manageable. Please give me ideas on how to make it better for the next thread! :)

Hello lovely ladies hope you don't mind me joining the thread! I have BC and am having further tests.... Hope you don't mind these questions.... Am certainly having chemo.... Does everyone lose their hair and has anyone had the cold cap thingy? Is it only suitable for certain people?
Feeling scared but good to read everyone's posts xxxx

Good morning lacies. Thanks Leslie once more for your great work on the thread.
Quick summary of my status: I was diagnosed with BC in June 2015. I had lumpectomy, axillary node clearance, chemo and radiation therapy in that order. I am now on Tamoxifen, but my oncologist wants me to finish the pills I have left and is moving me on to the post menopausal hormone therapy pills as i have shown all the signs of medically induced menopause for over a year now with no periods.
petitepeavh welcome and sorry you had to join. Have you tried reading through our chemo guidelines posted on age one of this thread? They are a compilation of lacies' experience with chemo.

Hi Petitepeach, welcome, though sorry that you are having to be here. Depends on the chemo. There's all sorts of different combinations, tailored to each person's particular sort of cancer. Mostly people are at risk of losing their hair, but the 'cold cap' works for quite a few of them. Your oncologist should be able to tell you their view of whether it's worth trying.

Thanks ladies...... Torn between being in denial & doing the research... Suppose it is staring to become very real! Xx

Good Morning to you all
I thought maybe it was time for me to check in.
I have often read and lurked on this thread but for various reasons didn't post or become an active member.

I was diagnosed with an incurable but treatable cancer back in 2012. I had quite a difficult treatment journey with trial chemos and a stem cell transplant, lots of horrendous side effects and was left with long term health issues on top of the cancer diagnosis.

In 2013 I was officially classed as being in 'remission' with no active cancer found. Life reached some kind of normality in terms of 4 monthly checks and maintenance therapy. I felt great but knew that remission was temporary ( though the dr's thought a long relaspe was a very strong possibility)

December brought my normal 4 monthly check and the results at first glance looked great. I then got a phone call just before Christmas to say that a trace of abnormal cells had been detected.
I am due to see my Oncology team on the 19 th to discuss what if and why.

I am a bit annoyed! Life is good and I have plans to drink lots more Pina Coladas by a pool.
I really feel like I don't have time or the inclination to do bloody treatment again.

I was diagnosed in November 2015, Mx in Dec 2015, ANC in Jan 2016 , chemo Feb-June, rads June-July 2016. I had stage 2, grade 3 IDC with 2 nodes involved. I'm still on Herceptin until March, and I also take Tamoxifen although my onc said its benefit is borderline because my cancer was only 3/8 ER+. I'm back to my normal activities now, and my energy levels are quite good. This time last year I was in a real mess, but I am now trying to be positive and embrace life.

I'm sorry to see so many new people here. Itsallabout I hope you get a good plan when you see you team. Petitepeach my onc was a big fan of the cold cap and really encouraged me to use it, to the point where I felt under pressure and was scared of being a failure if I couldn't cope. However, the lovely chemo nurses emphasised that it was my choice and so I did not use it, and felt comfortable with my decision. I do have a RL friend who got good results with it, and it helped her. Chewing I wish I could make this better for you, sending love and hugs.

Leslie many thanks for the new thread and compiling the Lacies Guide. Hugs and waves to everyone.

Happy New year to everyone! And welcome to the new people, this is an amazing place. And Leslie, you are wonderful and keeping things up to date!
I was diagnosed with stage 3 cancer in both breasts and nodes 8 weeks after the birth of my 3rd dc in October 2013.
I had 6 months of chemo, a bilateral mx and radiotherapy. I'm BRCA 2 +ve so also had ovaries and tubes removed.
I had post menopausal bleeding so had a scan in November which found my endometrium was thickened, so I'm having a biopsy on Thursday. Not looking forward to that!

Happy New Year everyone.
I don't get to post as much as I'd like as my (ancient) iPad freezes if I try to post on a thread with too many posts.
I was diagnosed ER+ in Oct 13. Had 4 x FEC chemo, 12 taxils, a BIlateral MX (without reconstruction) and some lymphs removed and radiotherapy.
I've been on tamoxifen for 2 1/2 years now. I had a period last May after 2 years without which led to gynae investigations which showed a uterine polyp which thankfully was benign.

Thank you Leslie, you are such a star to keep these threads going. I'm sorry to see so many people have to join us.

To Isodora, I chose to have a bilateral mx despite only having cancer in only one boob - my thinking was I didn't want the anxiety and would have felt I was just waiting for it to come back. I also apparently had very 'dense' boobs which meant biopsies were difficult and painful and often had to be repeated.
I found there wasn't a lot of information online from those who decided not to have reconstruction so if anyone has any questions, please feel free to ask.

petitepeach, sorry you are joining but welcome!

I'm a bit of a tip junkie as leslie knows, and my hair is more of a signal of my femininity (to me) than my 32B boobs , so I looked into cold capping a lot early on.

• Have hair cut in a simple, short to medium bob
• No drastic styling, limit use of hair products, hairdryers, straighteners or curling tongs, avoid hair colouring and basically any manipulation of the hair -- you particularly want to be gentle to the roots
• Avoid washing hair often, e.g. once or twice a week. Your hair will feel greasy at first but many say this goes away after about a week
• Be gentle with your scalp: don’t scrub your head when washing your hair or using a towel to dry it; take care when wrapping it in a towel
• Avoid using a high-power shower head
• Use a wide tooth comb when your hair is wet
• If wearing hair in a pony tail, tie it loosely
• Some people buy silk pillowcases or a sleep cap
• On the day of chemo, some take a mild painkiller like paracetamol 20-30 minutes before (the first 5-15 minutes of the cap application are the hardest, after that, the scalp gets numb and the remainder of time with the cap on is more tolerable) and distract themselves or remind themselves to stay focused on why they're cold capping; as always, check with your doctor before taking anything
• Important: ensurea good tight fit good contact with the crown, top and sides; chin strap on firmly and cap doesn't move cold capping isn't easy to go through, so if you have determined keeping your hair is important to you, don't be afraid to speak up if you think the fit isn't right
• Wear a scarf/lots of layers/warm socks/take a blanket to stay warm
• Drink lots of water
• Be prepared for longer chemo sessions. The cold cap is worn for a set period prior to, during and after chemo. The time varies depending on the drugs, but it will add at least an hour to your treatment time
• Don’t panic or get discouraged if you find yourself shedding some hair; it's surprising how much hair we have and can lose before it becomes noticeably thinner
• Diary 2 in Victoria Derbyshire's breast cancer diary shows her using a cold cap: www.bbc.co.uk/programmes/articles/4JlZ8vSl67pKx5n8q7xzF5l/victorias-breast-cancer-diary; DH and I watched all the videos when I was diagnosed -- it's only a small glimpse into one person's experience but I think it helped us calm down a lot!

My summary: 43, diagnosed with BC end October 2016, L mastectomy with immediate DIEP reconstruction and sentinel lymph node biopsy in early December. Three small tumours (the largest was 16 mm, all ER+ PR+ HER2-) and DCIS were found. Just started tamoxifen before Christmas -- no chemo or radio required

Oh, and like wine I also chose not to have reconstruction, so I'm happy to talk about that too! I was 38 when diagnosed.

Weebara, I have had that biopsy twice now for unexpected bleeding. I was terrified the first time, almost didn't get in the chair, but it was fine. I didn't feel the camera go in, very lax cervix obviously and there were just a few quick pinches as they took samples. please don't worry.

Quick recap, I was diagnose in May 2014 aged 50. 11mm lump, 8/8 ER+, clear SNB, WLE, 15x rads now tamoxifen which I think will change to anastrozole in the next few months. I was fortunate not to need chemo and I will be monitored for another 2 1/2 years. This place kept me sane and I really don't know how I'd have coped without it. I don't post as much but I do read, mostly because I can't help with chemo advice. I've also had some gynae side effects from tamoxifen, still under observation so happy to discuss that.

Thanks MrsRhod! I do remember you having inconvenient bleeding! In some ways I wish they'd just whipped out my uterus when they did everything else! How long did you take to recover? I have a friend visiting from the Netherlands that day and I'd love to see her but might have to take it easy.

Thanks everyone for further advice - will bring the cold cap up with my oncologist as nobody has mentioned it! Hope everyone is ok this morning - it is lovely and sunny where I am xx

Great idea about the info and top marks for leslie for keeping the page in order and having such a fantastic memory.
Potted history: diagnosed at 48 January 16 with bc 34 mm tumour 30mm stage 2, grade 2 bc and 4mm high grade dcis. Wle and reduction, chemo, rads now on anastrozole and 2 x year zoledronic acid infusions.
Agree with Mrs rod chewing, leslie you must be first in line for a break xxx
Quick question for those whose hair bogged off but has grown back how did you manage it when it was growing back? Mine is growing back very curly (it's like my mils perm! ) and upwards, if it carries on I will move from labradoodle to look like crusty the clown .

Morning everyone beautiful day here too - off for a long walk in a minute. Will wait to post my summary until I have all the facts! wineoclock I have an original/vintage iPad too and have sometimes struggled with the MN app. I've found that updating the iOS software and clearing the cache regularly helps (along with turning it off & on again haha). I expect you've done all that but just in case...

Sorry, not really got the energy to post to everyone. My back hurts and I feel sick. I don't think either is anything to worry about, but will see how it goes. Annoyingly I threw up all my medications last night.

So welcome to newbies, but sorry you've had to join us.

And an enormous hug for chewing I have days like that too. I find there's no way to snap out of it, but it will pass. I have spent whole days in bed with no energy to even listen to music, just waiting for time to drift by excruciatingly slowly. Then eventually the fog lifts and I can carry on. You can say anything here so if you want to talk about your fears then please do. Or if you can PM me. Cancer sucks. It really does. And sometimes it all feels so pointless as it's just delaying the inevitable. I'm not being very cheering so I will stop now! I hope today is better for you.

Waving to everyone. I hope you're having a good day.

Hugs to you Leslie hope it passes soon

Weebara, I was fine afterwards really. I took some paracetamol and it was just slightly niggly but it wouldn't have stopped me doing anything if I'd really wanted to. If you're the same it will be fine. I suppose it might depend on how much they probe, but if you're going to be awake for it then I doubt they'll do anything drastic. You might bleed slightly afterwards.

Leslie, I'm sorry you're feeling rotten, hopefully it's just normal rotten and soon clears off

Hello all
Thanks for the hello Leslie. Feel a real fraud posting here btw as thyroid cancer seems to be much easier to treat than so many other types

I keep getting told to be positive and put it behind me by some of the few people i have told, which is pissing me off as I haven't had my radioiodine treatment yet !!! I've only known about the cancer for a sodding month, and there is a likelihood that it is lurking elsewhere inside me at the moment . I do feel as positive as possible as I can as if all being well it should all be ok ...eventually . My Dh is being brilliant though.

chewing sorry my earlier post was not uplifting in the slightest. I shouldn't post when I'm not feeling well. I hope you're feeling a little better today than yesterday. If you can face going out then some fresh air might help. But hiding in bed is completely justified if that's what you need to do

debska you're not a fraud at all :) it's for all cancers

People find cancer very difficult to cope with and often seem desperate for people to "get over it". I think partly because as a society we have turned cancer into a terrifying monster! It's shit, but so are lots of diseases.

I'm glad your DH is being supportive. And hopefully it's not lurking anywhere.

Argy it's been a beautiful day. I hope you enjoyed your walk!

helly that's a great image royal has had a hair rebellion too so hopefully she can advise!

java have you swallowed a cancer book?! excellent advice

petitepeach definitely worth asking about the cold cap. There was some discussion about it on the previous thread, including a photo, if you fancy trawling through! (There's a link to it in the first post.) welcome to the thread but I'm sorry you need to be here good luck with your tests

weebarra sorry you'll need the biopsy. Good luck

wine lovely to hear from you. Sorry your iPad is still misbehaving!

Mysillydog how was your first term?

mrsrhod I must confess I didn't remember it all as such. I searched through the previous thread to check :)

Itsallabout welcome 19th is a long wait. I hope you have plenty of distractions. Hopefully this means they've caught whatever's going on very early. Not the news you wanted though. Especially not right before Christmas. I hope you've managed to enjoy yourself anyway I'm not a fan of pina coladas but I do like getting caught in the rain but I hope you get many more of them!

royal that sounds like good news about the tablets/menopause. How many do you have left?

Halfbaked good that you'll get sick pay, but it is difficult. There are various benefits you might be eligible if money gets really tight. Do you have a nurse? They might be able to advise on going back to work or not. I'm glad you've had a response from the hospital and I hope you get an earlier appointment

pepper good luck on Wednesday and I hope the cording improves. It sounds very uncomfortable

missyB I hope the acupuncture helps. Better safe than sorry with the contraception - my headteacher at primary school accidentally fell pregnant at 50 (though no breast cancer treatment)

Waving to amber, Fresta and mum. And really hoping I haven't missed anyone!

Thanks all for the kind words. I'm feeling a bit better. I've been being sick so have resorted to taking Calpol instead of tablets I felt a bit feverish earlier but thankfully it's easing. Hopefully I can avoid A&E. I'm certain it is pouchitis but it always results in lots of unnecessary tests and fuss. It's been over three weeks since my last chemo so I doubt there's much risk of neutropaenia now anyway.

So sorry you were not feeling good earlier Leslie and bless you for remembering each and every one of us
I have five days left of Tamoxifen, then it is the other stuff. I have, luckily, been very busy with family and distracted from my upcoming pelvis MRI and axillary biopsy.
Sometimes you also just get tired of worrying.

Thanks for setting up the new thread leslie and posting all the tips - some great advice for new joiners.

I don't post much these days as I've come to the realisation that I'm not very good in groups. But I do try and read and will post if I think I can help out.

Brief history - diagnosed July 2014 with stage 2 grade 3 BC (er/pr - her2+) in left breast. Had chemo and 2 WLE followed by 20 rads and herceptin which finished in Nov 2015. Fast forward to May 2016 when I just knew something wasn't right near my scar. Diagnosed with 4cm high grade DCIS in left breast and had a mastectomy and DIEP reconstruction in Aug. Subsequent biopsy revealed 2 areas of grade 3 tumours so was put on 4 cycles of vinorelbine oral chemo. Finished that just before Christmas so now just have herceptin to go which should finish in Oct. Will probably have another op to balance out breasts and nipple reconstruction so not out the woods yet.

I haven't really read too much of the thread but I so sorry to hear that things aren't so great for both chewing and leslie. I'm thinking of you and hope things improve.

As to cold capping, I tried it on my first dose but hated it and my hair fell out anyway so didn't bother again. I didn't get a wig and just wore scarves until my hair grew back. Luckily it didn't come back too different to before (Although strangely my parting switched sides ) but I just kept getting cut regularly so although it was very short it was in some kind of style

I am still cold capping - four sessions down and 2 or 3 to go. I do find it very painful for the first half hour - I have cried into the heated duvet most times - but once that's over it is manageable. I have also been prescribed a sedative which has helped the last couple of times.
I do still have a pretty full head of hair - it's drier and goes even frizzier easily but to the average person it probably looks normal.
Updated photo attached!

My summary is : went to doctors with lump and sore nipple mid August. Initial diagnosis of DCIS requiring WLE and radiotherapy. This all sounded quite neat and manageable. No chance.
MRI and nipple biopsy showed invasive cancer.
I'm 42 with two young children aged 4 and 7. My DS7 has severe autism - so what was already a stressful challenging life for us all got even worse.

Diagnosis: HER2 positive, oestrogen receptor negative, Grade 3, node positive carcinoma of left breast and possibly armpit.
Treatment: neo adjuvant Docetaxel FEC T chemo with Pertuzumab and Trastuzumab, followed by surgery and radiotherapy.

rocket your hair looks amazing! Well done for persevering with the cold capping, it's definitely working for you. Know what you mean about a double blow to a challenging life as my DD (9) has cystic fibrosis and a severe (anaphylactic) milk allergy. These last few years we just seem to lurch from one crisis to another...