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! :)

Pepperrabbit that is just unbearably sad, and also like you makes me so angry at the idiots and charlatans who spout this nonsense.
Having so many medical appointments, chemo, surgery etc etc is awful and exhausting but I know I just want to be here as long as possible for my children.

Good luck to everyone having surgery soon and hope everyone else is feeling ok.

pepper I'm so sorry to hear about your friend that is just so desperately sad. Especially that she realised too late. Perhaps at that stage denial would have been a kindness. If there's a hell then I hope there's a special place reserved for all those who prey on vulnerable people with their nonsense treatments

ginger that's very sad too. I often think how difficult it must be to go through treatment without any support

Halfbaked I'm glad the PICC is helping and I hope the side effects aren't too bad. Now I want an ice lolly!

rocket I'm glad you've got a surgery date and plan now and as amber says it sounds like they know what they're talking about

Waving excitedly to foofoo who hasn't posted for ages - lovely to see you :)

looking your surgery sounds fascinating! Also your surgeon sounds very considerate :)

sdoc good luck tomorrow

Argy it's such a big change to your body. There's no right way to feel about it all

fluffy fingers crossed for a reversal :) I had some gel sachet type things to go in the bag to help with diarrhoea. Obviously it doesn't help with dehydration etc, but can make it a bit more manageable :)

Grismo lovely to see you. How are you?

royal I'm also thinking of you and hoping all is well

chewing you're in my thoughts too. I hope you're doing OK

Waving to everyone I have missed

I've found the chemo side effects a bit tough this time round. Mainly my digestive system again. Grr. I've been quite worn out, so lots of lazing about.

It is about four years now since I first joined the thread. I haven't been particularly active for all of that time. I wonder how many oldies still lurk!

Hi. Sorry for not being about for a bit but I've had some bad news and needed some time to take it all in.
I am starting second line chemo next week which has a fairly low success rate and after that there are no other treatment options. It is very aggressive and just about the worst type to have. Because of the rare circumstances there are no suitable clinical trials available either. The prognosis is a bit grim so I am now busy putting my affairs in order It's all a bit surreal really.

Morning lacies. Thank you Dinster and Lesliefor the kind mention.
I have been reading the posts here on and off, but I am so preoccupied that I can not really find much to say. I have had my pelvis MRI and that seems ok, nothing sinsiter. I am having my left axilla biopsy on Monday and will see how that goes. In the midst of this, it turns out I have some lymphodema in my affected arm, mainly in my wrist. So I am now having phsyio and may get a sleeve. I am lucky it is not at all bad,but they do not want to risk neglecting it. To think I was doing all the exercises with such dedication:( there really are absolutely no guarantees no matter what you do. Sigh.
Chewing i can not tell you how sorry I am to hear your news. Damn cancer. I hope whatever they use to hit it works and that their prognosis turns out to be wrong( there are many documented cases where doctors' prognosis has been wrong) i am thinking of you and praying for you.
pepper i am so sorryabout your friend. Every now and then w e hear or read about someone who has been a victim of this kind of nonsense and whilst I can understand why someone would want to believe that these diets etc work, I think it is such a shame that people likeyour friend are robbed of more time which could have been spent with their loved ones.
My doctor has switched me from Tamoxifen to Arimidex and so far the SEs are some aching in my bones and loose bowels. I am due for a gyaena check up to monitor how that bit of me has been affected whilst on hormonal treatment.
I feel calm but my head keeps working away even whether I am busy or not!
leslie hope the severity of your SEs this time has passed by now and that you feel better. To even say you have not alwaysbeen active duringyour 4 years on here is a massive understatement! You are the most generous lacy with her time and thoughts! Bless you.
Waving to all the other lacies and hope the day ahead is a good one for you.

Oh fuck chewing I'm really sorry I can completely understand needing time to absorb it. Please just know that we are here if you need us. I really hope the chemo works. I hope you have lots of real life support x

royal that's good news about the MRI. I have my fingers firmly crossed for your biopsy too. How long will you have to wait for results? Sorry about the lymphoedema. What a pain. I hope the Armidex side effects ease off soon. I'm not surprised you're preoccupied with so many things going on!

I hope everyone has as good a day as possible :)

chewing, im so sorry to hear that, no wonder you have taken time out to get your thoughts together. Actually I'm sure you haven't managed that at all, this whole process has been such a challenge for you with everything being untypical. Like Royal I hope you are one of the people who have some success with the new regime.

royal I've been watching out to see how you're doing. Good news about the MRI but bad about the wrist, I hope they can stop it getting worse. Is your axilla biopsy being done under GA? I think I'll be switching drugs in a couple of months when I have my 3 year check up. Let me know how you get on. My oncologist has said I can switch back to tamoxifen if the new option doesn't suit me. I'm not at all sure about that, I sometimes wish they didn't give you the choice.

Leslie, how long is this particular chemo going to last? I have two nieces, sisters, with bowel cancer. I always think of them when I read your posts, in their case it's genetic.

DH is away in America for ten days. I'm a bit anxious about the timing, with Trump about to be sworn in. There's been a bit of unrest in California, where he will be from Friday.

Hello to everyone else, foo nice to see you again. I'm very lost with new names now but I wish you all well.

Thanks leslie and mrs. Leslie, hope you are feeling better today?
Mrs Biopsy will be done under local anaesthetic not general. I don't recall my previous biopsies being particularly painful, just uncomfortable. I hope it is not any different this time! I hope all these scans and biopsies are just extra caution on my oncologist's part and that they find nothing sinister!

With biopsy results it could be anything from five days to ten! I hope they do not keep me waiting too long.
mrs my oncologist was quite sure the switch to Arimidex was the wise one and he insists it is "lighter" . So far nothing drastic to report where SEs are concerned and I hope your doctor makes any transition easy for you! I wouldn't worry too much about your DH. The big protests are mostly happening in DC, but he would be wise to avoid places that may attract trouble. Who'd have thought Trump would actully make it eh?! Crazy crazy times we live in.
Take care all and Chewing please be sure we are here for you.

Hi royal, I've just educated myself and discovered Arimidex is the same as Anastrozole which is what my team call it but that's what I'll be getting. My cancer is 8/8 ER+, I guess this has something to do with the drugs being swappable? Did you have blood tests first, I've read it can raise cholesterol levels? Mine hasn't been tested for decades but it was high, I don't want that to be an issue and have to also take statins. I'm having horrible flushes, 4 already today. I hope that doesn't get worse. The oncologist was a bit of an arse last time I saw him, he didn't seem to take too well to questions but you have to ask things. It's funny how they have different approaches between hospitals.

I've got a lymph node in my armpit which has been swollen since rads finished. It was scanned several times and they took a biopsy. It's still there, they're not bothered about it. Scary times but I hope you get a quick all clear.

mrsrhod I hope your DH has a safe trip and isn't affected by any unrest. How are your nieces getting on? Do they have polyposis of some sort? Thankfully I'm the first in my family so my sister isn't affected. That was my biggest fear when I was diagnosed. The chemo is just ongoing really. I'm having a scan soon ish to see how it's working. They will switch to something else when it stops working, and I might have some targeted radiotherapy at some point, but it's all a bit vague at the moment :) some people have this regime for two years or more!

royal hopefully the biopsy won't be too uncomfortable then, and hopefully you'll get the results quickly. It's definitely better for them to be cautious than ignore something, but the stress of waiting for results is huge

I'm feeling marginally better today thank you, though I have a very unglamorous bum pain I'm working on my surgical team to do another bowel surgery to reduce some of my issues

It's bewildering that Trump is becoming president. Life is difficult enough without people trying to make others' lives worse

mrsrhod cross posted. The hot flushes sound hard work. Hopefully they won't be so bad on the new drug!

Hi Royal, I'm not exactly sure what they've got. The younger one has had fairly drastic surgery and some chemo but is well again and just bought her first house with her boyfriend. The older one had surgery and recovery time but they failed to join her up again successfully so still has an 'ostomy' of some sort with plans to try again. They have two brothers, one has the gene too and is watched. Their dad, dh's half brother, sadly died 18months ago but in his 60s. Very fortunately DH had a different mum so different genes. My poor fil lost two wives to cancer, I hate this disease in all its forms.

Sorry, that was to Leslie

Your family has had such bad luck I'm glad your DH has avoided the genes

I hope she can be joined up again soon :) it sounds like it's probably the same surgery I had. Though I am hoping to have mine undone and have a permanent ileostomy at some point

Chewing so sorry to hear your news, thinking of you and hoping that the second line treatment works for you.

Sorry I'm not very good at reading and remembering who else is having what and when on the thread - I shall blame chemo brain for that .... but hoping everyone else isn't suffering too many side effects from treatment at the moment.

Hi everyone, I haven't read the thread for a while as it dropped off my active convo's list. Welcome to anyone new.

Chewing, I can't think of anything useful to say, but I am thinking of you and your family and hope you are being well cared for by them. I am so sorry to hear you have had such bad news.

Royal, I have lymphoedema in my arm too, it's not really that noticeable now though. I have a sleeve, but haven't worn it at all since the autumn and the cooler weather helped. Like you I find it is most noticeable in my wrist where the veins/tendons are slightly less visible and the skin indents more easily there. I felt really worried about it at first and was convinced I would end up with a huge arm, but I feel more relaxed about it now and don't even think about it that much.

Chewing I am so so sorry. I really hope the chemo works. I'll be thinking of you.

Good morning all. Thanks mrsand leslie. Hope you are feeling much better today leslie. Mrs hope your hubby is spared any unnecessary excitement today!
Fresta yes you describe your wrist as if it were mine! I don't even wear my watch on that wrist anymore as I can barely clasp it shut.so, I am trying to adjust to wearing my watch on my right wrist which will take getting used to I must say!
I was told too that it is not serious but to monitor it and once I get the sleeve to wear it when active and not necessarily all the time.
I hope everybody has as good a day as possible today. Will try to avoid watching the news today

Hi everyone. I've been reading. So sorry to hear about so much shitty cancer news for so many of us. Rocket, that's rubbish about chemo, but I do hope your surgeon will be able to get everything when they operate. Chewing, I'm so sad to hear your update too, sending you love and a hug. Leslie, hope you're continuing to feel better. MrsRhod, your oncologist IS an arse - carry on asking the questions.

I got home on Sunday, and getting better every day. I don't want to frighten anyone going for surgery (I had mastectomy, ANC and LD recon) but it was horrendous, the most painful thing I've ever experienced. I don't think I have a particularly low pain threshold, and after various reassurances, I wasn't expecting it to be as painful, but it was very much out of control, mostly the donor site on my back. Apparently I had a very unusual response, so anyone else having this surgery shouldn't expect the same level of pain. Anyway, it's done, and whilst I'm not particularly happy with the results, I will live with it. I don't really want any more surgeries to alter it, although I know it is early days. I went to have the dressings off this week, and it felt like the nurse was expecting me to be dancing around the room with the result. Yes, it's healing well, and the surgeon has done a 'good' job, but it's not something I ever wanted to have done.

I also got my pathology results, 8 out of 14 lymph nodes positive, plus multiple areas of cancer. I've asked for the full report. Not the news I'd hoped for, not the worst either I know, but it's the full whack of treatment for me ahead. I'm still struggling getting my head around it all - going from nothing obviously presenting as cancer on my first mammogram and ultrasound to this! Surgeon did say that they are pretty certain they got everything, he was able to do the ANC through the mx incision, so I don't have another wound/scar in my armpit (Rocket, worth asking?), and that 10 years ago he wouldn't have been positive at all about the future, but now the treatments are good and effective. Let's bloody well hope so.

Trying to get used to how everything feels now as well - weird areas of numbness, stiffness and bizarre phantom nipple sensations!! Eeep.

Love to all x

Flippyneck firstly well done for getting over with the surgery and all. People have different experiences with surgery and sharing gives those who experienced the same as you to be supported. I hope the next steps in treatment will be more merciful! Try to take each day as it comes( easier said than done I should know!) focus now on getting better after surgery and make sure you do stretching exercises to avoid a stiff shoulder etc..take good care of yourself and trust me ticking each day off is an achievement in itself. Best wishes.

Thank you royalmama. I hope your biopsy is quick and painless and the result is clear. And thank you for the reminder about exercises. Shrug, shrug, shrug.

@sdoc2016 - i woke up thinking of you today, how did it go yesterday?

Flippy sorry that you had such a bad reaction to the surgery. As royal says, it's useful to share all experiences, good and bad. Though hopefully no one else will have a similar experience! I'm sorry about the results meaning further treatment. We will all be here to try and support you through it. I think sometimes the medical people get so used to seeing surgeries and stuff that they forget quite how much of an impact it has on our lives, even with the very best surgical results :) I hope you continue to recover well and good luck with the exercises!

sdoc also hoping that everything went OK yesterday

chewing I'm thinking of you lots

Leslie and baubles. Thank u for thinking of me. I had good news. Gynae said no reason to suspect cyst as cancerous and it had gone down to 4 cm. lots of endometriosis found which he said would raise ca125. Back in 4 months to review and do further bloods. I am very grateful to each and every one of you for your support and advice when I posted. I now feel bit cross with myself for panicking when so many have been dealing with confirmed health issues but I have been humbled your kindness to me when I was scared. As I was being reassured yesterday about me my dad got news that he has melanoma but hopefully it can be treated successfully. I am truly thinking of you all and pray that each treatment and surgery brings you closer to being cancer free. Sorry this post is so long but I just wanted to let you know what your replies meant to me. Love to u all. ❤️

Hello ladies. I'm so sorry to read so many lovelies here struggling with bad news, poor health and general shit times. It really sucks and I am wishing you all lots of love And space to just be and feel and be supported through bad times and good as well.
I feel a fraud being here almost 12 years post diagnosis of my lymphoma. I likened my life to always wanting to live in Paris. Thinking a few years ago that I was indeed living in Paris. But then being told that it is in fact a film set of Paris- a great one, very realistic and with the sights and sounds of Paris. But every so often I get a glimpse of the cameramen or a wobbly set or something. And I am reminded that I'm not really in Paris. That's what it's like now after my cancer because now though I have no more appts about my lymphoma I now have yearly mammograms and yearly breast MRIs due to my now increased risk of BC due to radiotherapy. That's my fake cancer free life.
Yesterday I met with a breast surgeon who said he would be happy to give me a risk reducing bilateral mastectomy. Only reconstruction with own tissue and no implant is possible. So it's the major operation or a non reconstruction op.
I don't know. I know that a big risk of BC is a lot to live with hanging over me and I feel powerless. I know that taking control would be good. But still these are my breasts. But they could also be the place that cancer grows. But. But. But.

Evening Everyone sdoc2016 so glad to hear your news but sorry about your Dad but I hope his treatment is quick and successful. Leslie hope you're feeling better, I'm completely in awe at how you remember things about all our treatment and scans, my memory is useless these days! Chewing so sorry to hear your news and hope that chemo works better than anyone can imagine.
In Rover Towers its almost a month since my last herceptin but I had a letter from my onc saying that my white blood count is still below the normal range and that they'll test it again in 8 weeks. Has anyone else had this issue? I had my last chemo at the beginning of March last year and although my Herceptin carried on till December I didn't realise that my immunity was still likely to be effected. Reading through the letter I'm not sure my onc expected it either as he told my that I was fine to go swimming, to the gym etc which given the low level of white cells I don't know if this is a good idea.
Anyone got any thoughts or had similar, and any idea what I can do/not do to help it recover?