Tamoxigang cancer support thread 54: A new thread for a new year!

[WhatWouldLeslieKnopeDo]

Welcome one and all to the wonderful Tamoxigang thread! May 2016 bring us all health and happiness

If you are new here, then an extra big welcome to the club nobody wants to join. The thread is for people with any type of cancer, and also those who are waiting for results. So don't be shy. We are more than happy to hold your hand while you are waiting for a diagnosis, and we will be here to celebrate or commiserate, whatever your news

No question is too big or too small, someone will usually have an answer, or an idea of where you might find one. You can laugh, cry, shout, swear, and, of course, eat chocolate it is a bit of a safe haven from the mad world of cancer, the head-tilting and talk of bravery, and all the nonsense that comes with this diagnosis :)

So feel free to introduce yourself. And oldies, feel free to re-introduce yourself if you'd like.

We only have one rule here and that is no Googling!

Happy Mother's Day to all, especially those who are finding it difficult this year

Happy mothers' day to all💐💐 hard times are always made easier when we have people to share our thoughts and feelings with.

Hi Everyone
I am so worried have been reading lots of information and found this thread
I have been reading this and other past threads and hoping any of you might have some experience or advice for me.
My sister has just been diagnosed last month with breast cancer and then a week later found she has already got bone mets,
It all seemed so negative It is a ER and HER2 positive , she is totally fine now no pain anywhere but the treatment is Femara . At the breast clinic they said no surgery but the treatment should be chemo and perception straight away but then the oncologist has only put her on Hormone treatment saying they will save the chemo for later
They said it is not curable but my concern is that as she is fine now isn't it best to get the treatment most likely to help right at the start, it must be aggressive to have spread so quickly I am presuming

All the best to all of you dealing with any type of cancer , the support is wonderful.

Hello Aussie
Sorry to hear about your sister. I have bone mets but had chemotherapy to start with which was successful in getting rid of the cancer in the breast. Since then I have had other forms of chemo to control the breast cancer cells that have got into my bone marrow. I've also tried various hormone therapies, including Femara (Letrozole), but unfortunately they didn't work for me. If they do and the side effects aren't too bad, they are a lot easier on the body than chemo.
Obviously each case is different, so all our treatments differ. Is your sister also receiving bone strengthening injections? I have Denosumab injections every four weeks

Hello Aussiegonewrong and so sorry about your sister. It is so difficult when the diagnosis is made and everybody feels so dizzy and lost. I do not know if I can give any advice regarding the treatment plan, but the ladies here are great in supporting and providing the information they know. How is your sister coping emotionally and psychologically? Is she the type who likes to know everything and research stuff? Our general advice here would be NOT to rely on Google! By all means ask and ask and ask the doctors and express your concerns and question their decisions. They will of course want the best for your sister but it is always good to check out the options as the science behind all cancer treatments is developing.
I hope you and her are reassured as to her receiving the best treatment.
All the best.

Thanks Royal and Lily for your replies , she is in shock I believe and I don't think it has sunk in , I went over to see her but now back in Oz its very hard being so far away and feeling helpless, I don't think she is up to the research so I am trying too.i
Its so true that everyone feels dizzy and I feel so sad for her and her three children.

I don't think she is having bone strengthening injections so will check , I do hope they are doing what is best but as she got two different opinions already I was concerned that maybe her treatment is not enough , I get the not googling but I still feel that its good to understand the whole process
Lily I am glad that the chemo got rid of the cancer in the breast did you have surgery or has it ever been suggested?

Aussie Suggest you use Dr Google only to access sites such as Macmillan, Cancer Research and Breast Cancer Care (which has a secondary cancer forum)!
When first diagnosed, surgery was planned, after chemo. During the chemo process the Oncologist and Breast Surgeon agreed that surgery wouldn't be of benefit. I'm still here nearly three years later!
However, Amberlight has recently posted a link to an article on the benefit of surgery for secondary cancer patients.

Hi Aussie, welcome from me also, though not the best news about your sister, eh.

I would suggest that, if your sister wishes, she asks for a referral to a specialist team for bone metastasis. Plus a good explanation of why letrozone (femara) is the sole treatment of choice. It can work, it's true. But she needs the team to give her some more info, I'd say.

And a full genetic profile test of the cancer, so that they can target therapies. They may fight on that one, muttering about 'cost' and 'no need at this stage'. Yes, there is. The sooner people with advanced cancer get a genetic profile, the sooner teams can target it really effectively.

Meantime for you, I think. And best wishes to her. It's getting surprisingly hard to die from cancer these days, even if it's spread to bones etc. Lots of good treatment regimes can keep it under control. And that's what she will be looking for.

I'm glad your surgery went well happygolucky. I remember well the relief of getting those drains out. My back was in spasm because of their placement, there was instant relief once they were pulled out. The surgery can take a bit of recovery time, so be gentle on yourself and don't deny yourself some duvet days if needed.

Aussie I'm really sorry that your sister is going through this. I am very aware that cancer has a toll on close relatives. I know my family are finding it tough.

I have had my second FEC today. Only one more to go before the tax truck hits. Hopefully the side effects are manageable, and I am determined to avoid day 9/10 neutropenia. I have been stocking up on food before the nausea starts.

Morning all😐 I'm new to the group. I'm 36 and awaiting an appointment to check on a lump. I found a small lump like a hard grain of rice on Sunday. Went to my Drs yesterday and now playing this horrid waiting game. I'm sorry I broke your one and only rule.......I Googled😩 Big mistake!! I can't eat, sleep or function properly and driving myself insane. Anyone awake that has found a lump like a grain of rice? X

Welcome Dina. Oh the waiting is horrid! On the other hand, getting it checked out is so much the right thing to have done so hold on to that and try to distract yourself from thinking about it too much if you can. Easier said than done of course... Post here if distraction doesn't work!

Aussie, I'm sorry to hear about your sister. It must be very hard being far away from her. I don't know about secondary cancer but asking questions and getting as much info as possible from the medical experts definitely sounds right.

Glad you're another FEC down, mysilly. I hope the side effects aren't too rough today and that your WBC stays nice and steady this time.

Good morning to all, very frosty here.

Morning dina, I'm pleased you've been brave enough to join us. As I said yesterday my lump couldn't be felt but hopefully you'll get some other responses here today. Without going into lots of detail, if it is a tiny breast cancer that hasn't escaped from your breast it's very treatable these days. We don't all have chemo and treatment can be very short, mine lasted three months with minimal surgery. So don't despair. Ask anything you like.

Thank you mrsrhodgilbert.....I needed someone to talk. It feels so lonely going through this and so plucked up the courage 😊
I guess it's multiplied because I was diagnosed in 2012 with a carcinoid tumour in my lung and had to have 2 3rds of it removed via major open surgery. I've been here before and it's not a nice place. I guess we only hear of the worst cases on to and in the news and that's all I focus on. It's hard when family and friends don't understand how it feels and so they carry on with their lives while I feel like I'm stuck in a bubble. Any advice or words of encouragement will be gratefully received......dinster as much distraction as possible is needed😊

Hello all hope everyone is having as good a morning as possible, I posted on here in Jan and I have finally been referred to gastroenterology my appointment is in a couple of weeks they didn't do it as two week referral as due to my age(hmmm) gp doesn't think it is anything to worry about and thinks it is reasonable for me to have been in pain since Aug, but now I am really worried because my df has been referred under the two week rule with suspected bowel cancer he has his appointment on
Sun. I am not sure what to do because some of my symptoms could be gyne related as this all started after a mmc so do you think it would be unreasonable to speak with my gp nd see if I can have ultrasound just to check for things like ovarian cysts, it's just that I made to get better ASAP so I can look after dad as even if it isn't cancer he still needs a big op.
Sorry for rambling and typos I am on my phone and just need to get it off my chest before work x x

H dina. I've just had to do a bit of quick research to see what you've been through already. Goodness me, I can absolutely understand your anxiety and what a cruel trick to have this worry again.

You're quite right, it's not a nice place to be and I for one have moaned here about the amount of media obsession with cancer. If it's not in the news everyday it's in storylines of films and tv. It feels like a spectator sport, I've just been to the gym and they kept playing an advert for the race for life over the sound system. That sounds really ungrateful but there's no escape.

I have really struggled with the reaction of some family and friends. After an initial flurry of concern, cards, flowers etc they soon move on whilst we stay in our bubble. I have questioned my relationships with some people and have realised that I can forgive some friends for their ignorance but I cannot get past the behaviour of some family members.

So after all that moaning what I'm trying to say is that your feelings are absolutely normal. There is nothing that will take away the fear of waiting for appts and results, we all get very anxious and come here for support. But really, please believe that breast cancer treatment is very wide ranging these days and the treatment is not always as you might imagine.

Do you have work/children to distract you?

Lozwil, welcome back but how frustrating for you. I think you need to speak to leslie she is the gastro expert and is usually around. She is also young. But in the meantime I think it's perfectly reasonable to speak to your GP again. I have two young nieces with bowel cancer, it's a stupid dr who dismisses it because of age, keep pushing.

Morning everyone, new and old!

*Lozwil, nice to hear from you, your GP is probably right and nothing to worry about, although you must really want to get it sorted after all this time. It might just be worth waiting for the appointment you have booked in already, as even if your GP referred you, you probably will have to wait more than the two weeks for an ultrasound. Best of luck and best wishes with your dad as well.

I'm just back from seeing the surgeon. He is supposed to be excellent, but his bedside manner is very odd, it's as if the nurses are just pulling the strings from behind, I'm sure he had no idea who I am. Anyway, the upshot is I'm able to have a WLE as have had a good response to chemo, and full auxillary clearance. They said they could do it as day surgery if I wished. Has anyone had this operation and can advise whether I'm likely to feel ready to go home the same day with drains in as I have no idea how I'm going to feel after?

Hello Dina and sorry you are having to go theough this. This thread is very helpful and the idea is we support each other as well as we can. I guess we are all not happy with the way cancer is being paraded on tv and elsewhere as if we who actually have the disease are not here. As for family and friends, so e really dont know what to say or do, but there will always be someone who is more eager to help and listen and to be there ..so seek out that someone whom you really trust and maybe they would even be willing to go with you for your appointment? I too found my lump myself and it was a small hard one that i knew i had to get checked out. I hope yours is not malignant,but even if it is there is so much development in the area of treating breast cancer, you would be amazed. Bvause you had a brush with cancer before, i can understand how anxious you are. Nobody wants to revisit such an experience. Please feel free to come here and talk, think out loud, complain, off load, ask..anything. We have different cases and stages and experiences, so there is always someone here who is bound to be able to respond with some real useful info or advice.
Lozwil, hello again. Hope Leslie can respond.
Waving to everybody else.

Hi fresta. I stayed two nights. The drains are a nuisance, but doable. Mine stayed in for about 9 days I think. In general you will feel good with the painkillers, but your arm and arm pit will feel funny( numb and sore) .They probably wont discharge you if you are not up to it right? May I stress that as .i had full axillary clearance, that you carry out the stretching exercises they will tell you about. I can not stress the importance of these exercises enough. Do you have a date for your surgery?

Hi fresta, that's good news about the operation, I had that but not the full auxiliary clearance just SNB. I don't think I've heard of anyone coming out immediately with drains but I'm no expert. I was a day patient and was desperate to get home but felt pretty rotten. I live ten minutes from the hospital but was so glad it wasn't a longer journey after the anaesthetic. I guess it will depend partly on where you are on the list and recovery time. I would echo royals advise about the exercises.

Hi royal, how are the rads going this week?

Hi mrs, thanks for asking. Actually things have improved! I asked about that cramping pain I had last week and was assured it was not the radiation itself. I guess it is the nerves responding to the rads in the affected arm ( the one where I had the axillary clearance) as well as the awkward position during the treatment. I have so far no skin reaction but am using lotion twice a day anyways.
How are things your way?

Not too bad thanks, I had a positive appt with the surgeon on Friday. It was my almost two year check up. He went off to book me in for a mammogram and I got the appt through the next day, it's in April. That's the scary one. I've got a bit of rib pain still, SE of rads, it comes and goes. I think I need to buy some nonwired bras as they aren't helping.

DH flew out to California yesterday with work for the week so if I were accompanying him things would be a lot better!!!

Thanks for the advice Royal, my arm is still numb from SLNB so am used to that , but will definitely follow advice regarding stretching. There were lots of women at the breast clinic today wearing lymphedema sleeves which is my biggest fear. I am hoping there was a lymphedema clinic or something and that it is not that common, but I do find it a real worry.

It's so busy today! Hello everyone. My iPad is playing up so typing takes a while, so please excuse me not replying to everyone/short replies.

Aussie welcome, and sorry about your sister. Definitely stick to recommended websites as there are lots of crazy cancer theories and out of date stats out there. Your sister is more than welcome to join us if she'd find it helpful :)

Dina welcome. We often remind people that 9 out of 10 breast lumps are not cancer. So there's a good chance you won't be stuck here for long :)

lozwil sorry you are still waiting for investigations. Have you had any test results at all? It's a long time to have been waiting for answers. Sorry, I can't remember exactly what was going on, are you having many bowel symptoms? (Don't worry if you don't want to say!) I'm not an expert, but I've had bowel cancer and I love reading medical journals and textbooks. You could speak to your GP, it's always worth asking. But I suspect they may want to wait and let the gastroenterologist decide what tests are necessary.

I'm sorry your dad is under investigation too. I hope it's not cancer. Will he be having the same surgery either way? If you want to say what surgery it is, I might be able to advise. I've had a pan-proctocolectomy, which is removal of the colon and rectum. I can direct you to some good bowel cancer/surger resources if that would help :)

royal is the cramping better this week? Good that it's nothing to worry about and fingers crossed your skin continues to be OK.

fresta good news about the surgery. I was joking with a friend recently that some doctors should only do the medical side of things and have a "spokesperson" with good bedside manner to present the information to patients.

happy good news about surgery. Fingers crossed for your results. I hope you recover quickly I started saying "had" rather than "have" cancer as soon as the fucker was removed. I had chemo afterwards, so it was a bit odd saying "I had cancer" when I was still having treatment for it. But I wanted to put the experience behind me, and I didn't want that to be my identity. Everyone chooses differently. Some people say you can never say "had" as there's always a (hopefully small) chance it will come back. I disagree with that. Touch wood, there's no active cancer in my body, so as far as I'm concerned I had cancer and now it is gone, hopefully forever. It's also confusing not being able to distinguish between people who have had cancer at some point in their lives and are now relatively OK, and people who actually have cancer now. Between a third and half of us will be diagnosed with cancer at some point so it would be confusing if everyone said they had cancer

mrsrhod impressed with your gym going, how are you? Glad surgeon went OK, good luck for your mammogram.

Mysilly hope your immune system is less affected this time

I'm sure I've missed people, so sending you all love and hope you're having a good Tuesday :)

Good heavens. It took me half an hour to type that so didn't see your latest post mrsrhod good you've got an appointment. I think my next CT is in April so we can be results buddies! :) very jealous of California, too bad you couldn't tag along. It would be lovely to feel some proper, warm sunshine

Mrs let us all hope your mammogram goes well too.
Thanks you leslie. I am much better now.
fresta, yes lymphodoema is a major concern and unfortunately having the rads now incraeses my chances even further
I think there is definitely more awareness about lymphodoema now which means we know more about how to try and avoid it but in the end there are many ways to make it less of trouble if it does develop. The exercises do help reduce the risk.