Australian Sisters
Comments
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Hi Midnight - I'm pretty sure that what Kate has said is right. Metastasis is where the cancer from the primary tumour (in the breast) has travelled to other parts of the body. There doesn't have to be a recurrance in the breast first - most women won't have the breast any more anyway - as it had been removed by mastectomy. That's why they give us the chemo etc - to mop up any stray cells that are floating around our body after the mastectomy and stop it metastasising elsewhere in the body. Breast cancer usually spreads to the liver, bones, brains and lungs (if it's going to spread that is).
Kate - my boys are rough collies, and they like to play tug-o-war lol. We used to have a mad irish setter and we got him when he was 11 months old. He was free to a good home, and we should have taken the clue from that lol. He was an extremely challenging dog to own. If he'd been a child he would have been diagnosed with ADD (or whatever they call it these days). He was so hyperactive he was given a drug that had just been approved for animal use (thank God) to calm him down. He was on it for about 2 years before he calmed enough for us to put up with him lol. I remember I went to bed with a migraine one day and I woke up a couple of hours later and came out and he'd dragged an armchair out of the loungeroom into the family room and pretty much chewed all the material and padding off it - and left the bare bones. I was speechless lol. It was a really beautiful (and expensive) chair. He destroyed pretty much most of that lounge and we replaced it with one from the Salvos until we got him under control - that one was mostly timber with just cushions for seats and the back (very basic) but he managed to chew through most of the timber arms.
He did get better as he got older and we didn't loose any more furniture to him, but he was a character. Had to have him put to sleep at the age of 11 with bowel cancer. Poor old guy, even as challenging as he was he was very lovable, drove me absolutely bonkers at times, but loveable. He's been gone for 3 years now and I still miss him. Next time you are on facebook - have a look in my pics - there's a picture of him.
Trish
xoxo
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ok thanks for that Ladies, i never had myself positive lymph nodes, well they did a sentinel node biopsy and it came back negitive and i never did chemo either as they said, it was 7% of good it would do compared to the s/effects i would have to endure, as long as i did the radiation and the tamoxifen, but after reading that other lady in the states and i know they have a different system, breast cancer is Breast cancer and we all are capable of having mets. i have founds out so much on this sight with you ladies that i should of asked or been made aware of and i did not ask things. but i am clear and thats the main thing, something is doing its job lol.
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Midnight - all I know is if you are worried could see your Onc and ask him if you can have a scan to check for mets.
Trish and Kate - you both made me laugh with your stories. I couldn't work out why our phone kept not working, eventually the technician told us the cat was eating through the wires when it rang.
Jenn - sorry to hear you are having a crap time. Just remember you are brave and exceptional to go through all of this.
My nipple hurts already and I got bus sick on the way. Really not looking forward to bus travel for the next 22 sessions although I will remember to take travel tablets next week. Kylie x
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Hi Midnight - you may have told us this before - but if you are HER2+ why did you not get chemo? Are you getting Herceptin? You usually don't have Herceptin without chemo.
Kylie - you poor thing - travel sickness on top of rads ((((hugs)))) Make sure you don't read on the bus - that won't help if you are getting sick. There are also some wrist bands that have a little ball bearing inside them that works like accupressure that can help with car/bus sickness and while I don't have a problem a friends son did very badly and these things worked really well for him.
Trish
xoxo
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Oh Kylie, I bet that trip is starting to feel old to you already. Is your son with you?
Jenn, it will be good to have a in-depth chat with your Onc on Friday re the oomph options. I feel so bad that you are having a rough time with rads, emotionally and physically. You're not superwoman so don't feel bad that your very human fears and frustrations are sometimes overwhelming your otherwise normal nature. These is an exceptionally difficult time for you and I think you have managed very well with what you have been dealing with.
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Trish I will try and find one of those bands, I had forgotten about them. I thought I would be able to read on the bus, but unfortunately I cant.
Kate - Dom starts school hols next week, I am hoping DH can take him to work sometimes, but otherwise he is stuck with me. I still haven't convinced him to stay with anyone else.
I had to get the ice off the car window this morning. I wish I had rads in warmer weather, it takes me 10 minutes to get all the layers off and back on again.
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Hi Midnight in answer to you question about metastasis; if the cancer comes back in your breast that is called a recurrence but if it appears any where else in the body it is called metastasis and you immediately become stage IV.
Some people have symptoms of the cancer metastasising to other parts of the body and some don't. My mets are to bone and I had massive pain prior to diagnosis but that is not necessarily the case. There are a lot of women who's mets have been found by accident or by their periodic scans.
Liver mets can give symptoms as in some pain or the function tests are abnormal and that's what triggers further investigation.
Lung mets usually present with a persistent cough that has no other cause but again sometimes there is no symptoms.
Brain mets can present by balance issues, memory issues, really bad headache, and personality changes. Having said that, they can also be there without symptoms; it just depends where in the brain they are.
This whole disease really is a crap shoot and just because you were dx'd with it does not mean that after your treatment it will come back. You may be one of the lucky ones who live another 40 years with no sign of it. My SIL is a 30 survivor and her treatment was BMX only.........no chemo, no rads and no Tamoxifen as it wasn't around then. She is still cancer free.
Learn about it as knowledge is power but please don't stress about it as that just takes the joy out of living. Deal with things as they come and not before as they may never happen.
Love n hugs. Chrissy
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Excellent post Chrissy
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oh ok i havent heard that chrissy!!! in a public hospital i would doubt that is the case. I would like to be working for a while before i have any recon done. my money is slowly running out..
August 16th is the d-day so maybe i will have a job by then....*crosses fingers*
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Kylie, I got those wrist bands at a pharmacy, to ward off nausea during chemo. The daily travel must be really hard to do given the distance.
Jenn, I think of you often. It's very unfortunate that you have had so many problems during treatment. I would be very disheartened too if I had had your experiences. Fortunately I had very few problems but treatment was emotionally taxing nonetheless. Also, I was very fortunate not to have to work.
After rads, you deserve something very special, maybe a nice trip to Paris :-) .
About removal of ovaries, as I said before there is a lot of information on this site and I think it's a difficult decision. I suggest read all you can on both sides of the argument.
Hi to everyone else.0 -
Racy - did you have a good holiday overseas?
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Fantastic. Can't wait to go again next year :-).
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Speaking of Bone cancer ladies, did any body see the piece on the news tonight about a lady with Bone cancer drinking mothers milk?
Apparently, she drinks 400ml per day and says that it is working to keep it (BC) at bay.
My DH immediately jumped up like he'd discovered the secret of life and was about to suggest/order me to start drinking it too.
All I could offer in defence was the other woman had Bone cancer as opposed to Breast cancer mets in the bones and doing that would probably not be good for
women with Breast cancer and............I don't care the outcome, I am NOT going to drink another womans breast milk.
Any one know more about this?
I got my new Colostomy reversal date yesterday and I have one month left as a 'bag' lady.
When I got out of hospital in December, I Googled colostomy and got lists of bag-makers brand names, so I gave up looking, as I didn't have much knowledge and I think I
was a bit loopy from the surgery and stress back then.
Googled 'Colostomy forums' the other night and oh-my, I am now a better educated ostomist, but a slightly more frightened one than I was beforehand.
So, I have gone from being a cock-eyed optimist to a cock-eyed ostomist. (Not my term, one of the user names on other forum)
At long last, I now know what they mean by 'a little bit of knowledge can be a dangerous thing.'
Never mind, this too shall pass.
Sheila.
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Hi Shiela, I hadn't heard about the woman drinking human breast milk but I'm with you on the no thank you bit.......lol.
Yay.....finally a date for your reversal and not too far distant at that. I'm guessing you are both excited and concerned all at once but I'm sure all will go well for you. You won't know yourself once the bag is gone.
As they say, it's best not use Dr Google unless you are prepared for the answers you get and not all knowledge is power.......lol.
Love n hugs. Chrissy
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Darn it. I wrote a really long reply, then I think I must have used up my wifi allocation before it was sent, because it's disappeared into cyberspace. So forgive me if it pops up and repeats everything I'm about to say.
Really I wanted to say a big chin up to Jennt28. With respect to your pain from radiation, it may get better. i also had pain on my first go. In fact I actually posted a question on it, but nobody replied, so I figured it was only me. However, it hasn't hurt since. Are the clips that were left in metal? If so, I presume the radiologist would work around them???
With respects to your lungs. the body is built with a lot of redundancy. That's why you can get by fine with only one kidney. And whilst 8% (which is the percentage that really matters) may seem like a lot to you, don't forget that that is only the area that will receive radiation. It doesn't mean that all of that 8% will lose function. There may only be a 10% reduction in function, of that 8%, if you follow my drift. Also, there are some things you can do to help protect your lungs. For example, I've read that flaxseed can help protect the lungs from radiation damage.
Don't get sucked into Dr Google. He just lurvessssssssss getting us worked up. I've had just about every disease going when i look at the symptoms. Googling should come with a health warning. I've also had a number of false scares since this whole breast cancer thing. I spent one week freaked out because a CT scan showed spots on my ribs, only for another one a week later to be fine, with the diagnosis just being bruising from my surgeries.
I totally understand the stress with juggling a job and treatments, plus trying to support your mum. My mum has breast cancer with mets and it's difficult trying to support her from half way around the world. I'll also be going to see her as soon as I get a window of opportunity in all of this treament.
Mel: yep it was a BCN group, so I presume the one you were referring to, as there's only one for young women listed. I can't remember the exact age range, but it is listed on the website. Nice to know the other group works for you. I must get my act together to go to one whilst I'm in the big smoke.
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Hi Sheila - yay! Only a month to go :-). I think I may have mentioned this, but my brother had bowel cancer (his dx came a month after my bc dx) and had surgery and a bag. He was one of the lucky ones, it was caught super early and he came through the op with flying colours. The thing that surprised everyone was how short a time he had his bag. It was only 2 months. He had it removed around March last year - or Feb - can't remember exactly, and he recovered from that op fairly well and now is going really well.
I should say that he was 66 when he had his op, so not a "young fella" lol but he was very fit - has been a car mechanic all his life, so very active and reasonably well toned, especially for a man his age. He says his "insides" aren't quite what they were prior to surgery and the bag, but he's pretty good. He had to stay fairly close to a loo for quite some time afterwards, and still finds there are things he can't eat but on the whole he's going well.
I hope you find the same experience - I'll be keeping my fingers crossed for you. I know it will be much better than having to cope with the bag, that would be pretty awful at times I'm sure.
And drinking breast milk? Oh my! Well if it helps some, I guess it's a good thing, but for bc ladies - especially er+ ones, probably not such a great idea lol.
Trish
xoxox
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They offered me chemo, but said, it was only 7% chance of doing much good compared to the s/e i would endure and as far as hercptin is concerened, i did not realise it was in the country as they were battling it out in court and apparently it has been since 2008 free funding for a year. but i am going to look on my pathology report and find out exactly what it says, so i know where i am with it all and then i can understand where and what i was at.
Thanks Chrissy, yes that is a good answer for me and all you girls are good help. i am now going to live a good life as every minute wasted on worry, is another one i will never have.
i will start with doing some house work as the tv sky man coming at one to do upgrade my sky tv, with my sky hdi, apparently you can pause live tv, well it will a challenge, am not techincal, its free insatlation and free for six months. take care girls.
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RE: 'The breast milk cure', at the end of the segment they quickly said that she was also receiving chemo..........
Thanks Chrissy for the fantastic explanation.
Sheila great about reversal. Hug. x
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Midnight, you really need to sort out your her2 status. If you are and you haven't been offered Herceptin, you have an extremely high risk of your cancer coming back. If you are then it's criminal that your onc didn't offer it to you. But it's not too late to start - I think you have up to 12 months. You will have to do chemo with it though, but will reduce your chance of recurrence by 50%
You'll like the sky tv - we have austar and yes you can pause tv, it's easy.
Trish
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Not sure if you are all getting sick of my sagas, but I had another one today...
Since my skin is so sensitive (I found my breast lump because I felt it hurting where all the docs said they were shocked I could feel it) and after 3 days I can clearly feel the exact area that I'm being "hit" I got concerned this morning when I could feel the field is going down the inside of my arm about 1/3rd of the way to my elbow! I know my axilla is targeted but not that much of my arm!
I think I told you guys that on my first day the tech whipped out tape and taped my arm back to "get it out of the way"? On the second day I said I would not allow them to do that again because of the risk of lymphodema from my arm being effectively tourniquetted and the tech got "huffy" and said "well, if you want it that way". Silly me had assumed they would make sure when placing me that the arm would be out of the way...
Yesterday during set-up I mentioned to the (different) techs that the arm rest felt like it was in a different place like for a shorter person and my arm felt like it was scrunched up. They didn't seem concerned and I trusted them...
With my arm hurting today, I emailed my RO and said that from my observation my arm seems to be getting hit and I was wondering why. She phoned me and tried to explain that I needed to let the techs tape it or I would have to accept that some of my arm may get hit! Well, did I politely stand up to that! I stated I was not prepared to compromise on either the tape or the arm being hit and I was sure there was some way they could ensure that it wasn't getting hit since other people didn't seem to have that problem.
Anyway, the RO came to the set up today. When I arrived the tech told me "we have moved the arm rest for you". The RO came in and checked and put a pen mark for me so I can see where the field finishes and that my arm is not being hit so much (still a bit further than I like but she assures me that is standard axilla height).
Such an easy "fix" to move the armrest for me... I think it was just pure laziness. They are a very busy centre, their patients are usually shorter, older and frailer than me (I'm tall and healthy and have a full, but not too full, figure) and they just like to leave the board in a standard "one size fits all" configuration that didn't fit me.
I am now wondering if the RO had assumed the techs had already tried to move my arm out of the field by moving the armrest. She was certainly aware of me having said no to taping my arm...
So, trust is not something I'm high on right now. Careful vigilence is what I'm working with... Jenn0 -
Jenn, I for one welcome all venting, where else can we do it with people who've been through similar experiences? I know it helps to normalise things to be in such a supportive environment.
I think my arms were up during rads but I'm not sure. There's a straight line through my armpit where the underarm hairs grow on one side and not the other, so I have to half-shave on that side. So I doubt there would be too many stray beams zapping your arms. You'll see when you get redness too that the borders are all very clear. I hope that helps.
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Hi Joy. My RO confirmed to me that for the past 2 days my arm was hit... Because they are covering my axilla with beams my whole underarm is being done but they should have moved my arm out of the field and they didn't...
Jenn0 -
Strange, my arm was never bound and I needed my axilla zapped. Something sounds wrong. Maybe someone else can confirm where their arm was placed.
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Jenn, good on you for being assertive, though you shouldn't have to be.
I was thinking yesterday it is hard to believe it's only six months or so since you and Kate joined this site and even less for Kylie. It's been a long six months!
I hope you all and your hair can move on very soon.0 -
Jenn - I remember my arm was up and behind my head but they weren't targeting the axilla. They did tape my boob the second time as the cancer was on the underside. Never heard of an arm being taped. Stick up for yourself girl!!
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Baby pic - finally dowloaded some software to fix the red eye
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Hi all, just popping in to see what folks are up too.
Hope all are well and good on you Jenn.
Big hugs
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Jenn you can always vent here, we are not the people who would ever get sick of hearing what you are going through, we want to support you.
I can't help you though, as I didn't have rads.
Just keep sticking up for yourself!
Trish
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Jenn we are all our own advocates when it comes to this and if you think something is not right, you did what was needed and spoke up............good on you!
Vent here anytime you want as we all know how you feel.
Sue again I'll say that little boy is just gorgeous! I could cuddle him for ages.....lol.
Aly how are you doing? Are you over the trip yet and getting back into routine?
Racy are we going to see some of your pics from your trip? I sure hope so!
Love n hugs. Chrissy
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If I hadn't discovered a Stoma forum 3 days ago, I wouldn't have any idea of what to expect Trisha with what they call the 'Takedown.'
Dr Vanrooyen, my surgeon, said it would be 3 months before it was done and it has stretched out to 6........probably because we are in
a rural area. I am now aware of the need for toilet closeness and adult pilchers, thanks to the other forum, so am madly working on my 'Keegles' to make sure the bowels
have a head/bum start....but Trisha, it wouldn't have crossed my mind if you hadn't mentioned it, otherwise.
I am 65, so we will have to wait and see how good my surgeon is at undoing his own work.
Sheila.
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