Australian Sisters
Comments
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Lovely shots of NZ Chrissy!
Wow, 11 years since your initial Dx. You are one of the well known, long timers here, I have been reading your wise counsel to members and newbies, ever since I got here. One hung low girl! LOL
You're welcome Lucy, yep the "surprise", is what we all fear with a DCIS Dx, I had a very long wait to get my final results, from the October call back, through to well into January because my surgery was right on Christmas and everything was closed for the break. I actually only found out when I did, because I got an infection in my incision and my Surgeon opened his office to see me. My pathology had been faxed through, so I was able to hear my results and get an explanation at that visit.
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Chrissy really lovely photos you make each photo so interesting . Lucy we have all been where you are and every now and again return to it . I had a friend over just finished 6 months of chemo with the Brac gene with 5 tumours 4 estrog positive and 1 triple negative all about 4 cm in total . They are throwing everything at her and she is starting to have panic attacks she is so stressed. I have encouraged her to come on this site for some friendship and hope. When she left yesterday I was quite flat
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Hi all
I haven't been on the computer for 3 days ( not like me). I have had an upset stomach, constipation which I normally never get, only after surgery that I've had it. I have been working everyday too !!! I started to feel better today and had my first proper meal since Monday night. I need to see my GP tomorrow to get another script for Tamoxifen so I will let him know .
One of my fingers has got really bad with arthritis just lately, my bone is sticking right out, I will have to see what I can do before it gets worse. I can't afford to stop work if I can't use my hands.
Glad to see that you all had a great time in NZ.
I haven't done any Christmas shopping yet so I have tomorrow off and may do a bit.
Carol
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Lucy - who was your surgeon? I went to the Wesley too. I'm one who had bilateral bc but opted to have lumpectomies - not at the same time but a year apart.
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Chrissy - great shots!
and eleven years! Wow! That's wonderful, and we expect you to be around for another 22 at least!Lucy, I am four years out from dx and sx now and am also a one hung low girl (great way of describing it Chrissy!) I also had ILC as a separate tumour from my IDC. I wanted both off, and like you my bs didn't agree with me lol. I'm used to only having one now. I wear my "foob" when I go out but when I'm at home I don't wear anything.
That fear that you have now will never really go away, but you'll think of it less and less as time goes on. It still crosses my mind from time to time, but I don't dwell on it anymore. I still come to this thread because so many of us have formed lasting friendships that are almost more than "just" friendship - we have become sisters.
I also try to help calm a newbie when I have the time on other threads and let them know that there really is life after bc.
Tammy - replied to your pm
can't wait to see you again.I've had a busy and very interesting weekend with the bit corporate shoot we've been doing, almost done now, just one more shoot to do. We start the pet with Santa photo sessions on Friday night too - that will be interesting lol.
Trish
xoxox
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Hello Trish, so true about forming great bonds with people here. I remember you calming me down 2 years ago too!
Good luck with the Santa and Pet pictures, I'll bet you'll have some funny stories to tell, with that type of shoot
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Hi Chrissy.. BaHaHa.. Yep...one hung low girl sums it up perfectly 😃 Great idea about sewing the elastic in the ordinary bras. When I went to buy the prosthesis I got it , a swimming one, a pair of swimmers to fit it in and 2 bras.. Ended up costing well over 800 dollars.. Luckily I could claim back 400.. But it's still a lot of dough.. Congrats on being 11 years out.. And here's toasting 🍷 you to many more!
Susie ..I have Dr Bennett ... Who do you have?
Trisha.. Just wondering...Did it take you long to get your shoulder movement fully back after your mascetomy ? I'm still struggling with mine, despite doing all the exercises... good luck with the kids and pets photos... I'm going with my daughter today to visit Santa 🎅 for the grand -baby' s photos.
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Ariom, Glad I could help calm you down, I had lots of people help me to calm down at the beginning, it's always nice to be told you aren't alone and you aren't going to die tomorrow lol.
Lucy, getting full range of movement back is different with everyone. It took a long time before I felt really comfortable with my range of movement. I still have days (now and then) where I have problems, but they are only minor. I didn't really take too much notice of when things got back to "normal". All I remember now was that it was pretty hard immediately afterward, and I kept doing the exercises, and eventually I wasn't thinking - I can't do that will have to get some help.
Sorry I can't be more specific, one thing that hasn't improved drastically is my memory lol - anyone else who had a mx able to remember?
Trish
xoxo
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Oh gosh Trish, I remember the night I found this site and this was the first thread I posted on, you girls were all fantastic, my biggest fear was that SNB. A couple of women had told me it was the worst experience of their lives and I believed them! Fortunately, you calmed me down and then, as it turned out, I didn't feel a thing!
With the range of motion, I got into massage really early on. It is something I have always done because I have Rheumatoid Arthritis, but it was really great for getting the range of movement back too. I did the physio exercises religiously, 4x a day for many months as well as the massage. I also had Mondors, so there were cords like branches, that were tight as well. It is different for everyone.
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Ahh ... yes - I remember the SNB lol. I was terrified too - more terrified of that than the actual mx! It's funny how some women find it terrible and some don't have a problem. I have a feeling that the way it's done here in Australia is different to o/s.
Trish
xoxo
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Trish, both the women who scared me witless were here in Australia. One was an ex co worker who had the same Dx as me a few years earlier, She asked me if I was having a SNB, I told her yes, and then she went on and on about it being like having broken glass injected and that it was the worst thing that ever happened to her and she was still traumatized by it. I was dumbfounded that she felt the need to tell me that, right at that time. I guess I should have avoided her after that, but she asked me, after my surgery, what kind of reconstruction I was having, when I told her I wasn't having any, she said "OMG, How can you bear to look at yourself!" not too often I am left speechless, but when I composed myself, I managed to tell her I had no problem looking at myself and neither does my Husband! It takes all types, I guess, but she's off the Christmas card list! LOL The other one was a woman in my BC support group, who gave me a full description of her worst ever experience, the dreaded SNB, just a few days before my surgery.
I must say, I did get a certain amount of pleasure afterward, being able to say to them both, "Gee, I don't know what happened with you, but I didn't feel a thing!" LOL
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She would be off my Christmas card list too!! And as for the second lady - well some people are just drama queens, I like to avoid those sorts of people too
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Chrissy, congrats on 11 years!
Carol, I hope you're feeling better now....
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Yes Lucy people move on or never come to forums in the first place. When I was diagnosed there were no forums!! It was very hard trying to get info....no way to get up to date stuff except from Drs. I have quite a few friends diagnosed around the same time as me or a few years later.....you meet them or friends put you in touch with them. I have 3 children and as they progressed through school so many other mums were diagnosed, through primary and secondary. I have so many GOOD stories. These ladies didn't have the internet so have never joined forums since.
I agree it does give an unbalanced view and even those actively involved in forums move on when they feel they have no need for them. It seems like you have a really good prognosis and I hope as time goes by you stick around here to help the newbies through.
jezza xx
PS Did you enjoy your wine??...lol
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Lucy - I now have Melinda Cook - did have Neil Wetzig who was a total arsehole - pardon the swearing but there is no other word to describe him. Melinda is absolutely lovely.
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Hi allI went to the Doctor's , I had an x-ray, new one just opened near Gp's so got it in 5 minutes. I have really bad constipation and have had a suppository which has started to work all ready, The Doctor gave me tomorrow off work as I don't think it will be good to have diarreah at work lol. I hope that this isn't the start of IBS or something, I feel sorry for people with bowel etc problems.
Carol
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Oh Carol - hope your tummy troubles clear up (((hugs))) I have IBS and it isn't any fun. I'm starting to get it under control though, which is good.
All is good here - finally finished the big corporate shoot and files sent to client, so able to breathe a sigh of relief ... now just have to get two bride's books done and ordered and all the pet photography done and processed, and then ... it'll be Christmas!
Trishxoxox
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Jezza.. I'd never thought about the fact that the people diagnosed 20 years ago never were on the forums.. Explains why they never think to pop in occasionally.. It would really lift everyone's spirits if they did.. It's great that you are here.. Certainly makes me feel good when I read you have 22 years under your belt.. and I'm sure it has bought comfort to lots of other women here too.. It's also good to hear that you know of lots of other GOOD stories too.. Yes.. I did enjoy the wine..😃 I haven't had any for so long that one glass 🍷 went straight to my head !! 😃 I wish you lived near by.. I'm sure we could enjoy a glass together.!!
Susie.. It would of felt so awful having a doctor you couldnt stand !! It's bad enough when you've got a good one.. Glad you like the one you have now..
Carol ..Hope you are feeling better now ..
Trish ..You certainly sound busy !! Do you get time off over Christmas ..?
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Hi allTrish I think that I have finally got rid of the constipation. I was really sleepy all day today and then actually had a proper meal for tea. My stomach ache has finally gone as well. I'll have to see how I go , hopefully this is just a one off.
Carol
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ugh.. At my GP's suggestion I have a counselling session booked with the Cancer Council for Monday afternoon.. I'm up and down emotionally.. Some days really good..others I feel so bad I can hardly get out of bed.. Also sometimes when I'm at the shops I get a feeling come over me that I just HAVE to go home.. Has anyone else been ?
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Hmm.....I guess the thing that does tend to play on my mind is that Australia doesn't routinely do the oncotype testing.. Seems strange.. I know our cancer survival stats are up there with other countries that have it....but..why don't we have it.?. Especially seeing they say that overall oncotyping saves the government money by reducing the cases of women having chemo when it's not necessary..I asked my BS about it i when I saw him last.... He said I have no need to worry as a tumor of my size and pathology would not of needed chemo....... He is a well respected Dr...But how does he know .... We always read here stories of the Wolf in sheep's clothing!
Sorry.. I shouldn't come on here being depressing...
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Lucy many docs in the US do not do onc type tests as they are not totally reliae. Also over there, there is a tendency to over treat and over test because of the fear of being sued. Also if insurance is paying then you test everything and that can be more invasive and over use of X-rays can cause extra risk.
Your doc is quite right. I just on 8 years out and have totally defied stats - i haven't listed my total path report. And I will have you know I am confident that I will be around for a very long time and intend to grow old disgracefully.
PM me if you want to chat.
Big hugs
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I bet years down the track that oncotype testing proves to have flaws. Lucy your diagnosis meets the standards for no chemo. Now if you had been HER2 like myself - then you would have had more aggressive treatment. Trust your doctors
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Alyson a quick question ? Are you still on hormone treatment ? Do u think that has helped? Lucy you become very up and down when you are first diagnosed. You have so many choices and decisions to make. You have to put up with your own grief and feelings PLUS every time you tell a person you relive the whole damn thing again!! Counselling is very good it helps sort out the anger grief and confusion. Aussie there have been a lot of strange bugs going around. We have had very hot humid weather and that seems to bring UTI's and gastro
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Lucy, counselling is very good at helping to get you into a better place and understand everything that has happened to you. I struggled for around two years. I'd done all the treatment, and it seemed to go on forever (I had to have Herceptin for 12 months). Then I was on an AI that really didn't like me lol. Once I switched to a better one for me, life got a whole lot better. My point is - you are still coming to terms with the whole dx, the surgery and how your life has been turned upside down. It takes a while to get over all that. I think we all really do have PTSD after a bc dx and we have to work our own way through it all.
I'm on the other side now - of course I still have occasions when I worry about what will happen in the future, but I've accepted it's out of my hands. If it comes back then I'll worry about it then. If it doesn't then I won't have wasted time worrying about something that never happened. That works for me, you have to find what works for you - but accept that it won't happen overnight.
As for oncotype testing - as the others have said, the US is a different ballgame. You have received the standard of care for your size and type of tumour. If I hadn't been HER2+ I probably wouldn't have received chemo, that was what tipped me off the fence my onc and the tumour board had me on until the rest of the path report came in.
It's fairly obvious from grade, size and lymph involvement how aggressive a tumour is - oncotype really just confirms all that.
Trust your docs xox
Trish
xoxo
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Lucy...I totally get what you are going through. I was told it was 50/50 as to whether I had chemo or not (my tumour was small but grade 3). I really liked my breast surgeon and after chatting to him I decided against chemo. About 5-6 months later I was still wondering if I'd done the right thing and asked to be referred to an onc. She said she would have given me chemo but it was too late now! I have been told since that she treats cancers very aggressively and not everyone agrees with her.
Chemo is not pleasant and can sometimes have side effects even later in life.As my surgeon says mostly it is absolutely the best way to treat cancer depending on size and type and node involvement, sometimes there is no alternative but if your medical team have weighed up your results including your path results I would trust them. If it helps at all 2 of my friends diagnosed just after me didn't have chemo...both had mastectomies. One was and still is married to a highly regarded gyno-obstetrician and I'm sure they would have taken everything into consideration.
What you are feeling is perfectly normal...I was the same....crying at the drop of a hat....couldn't help it. Don't worry about being depressing....you have questions and need to discuss things and this is the perfect place to do it.
jezza
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Hi Alyson, Delvzy, Susie and Trisha.... . Thanks so much for your replies.. Your answers about the oncotyping have really helped me to put it in perspective..
Starting to worry about my memory as well .. Find myself forgetting things all the time.. :-(
Alyson.. Oh yes.. HaHa.. To grow old disgracefully would be my dream too 😃
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Jessa... Hi.. Just saw your reply.. Thanks.. I guess we are all different.. and lucky to have our dx now rather than 50 years ago..Also thanks for sharing your experience..and that of your friends too.. It does make me feel a lot better to hear those stories.
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Hi Lucy, don't worry too much about your memory losses at the moment as they will be caused for the most part by stress and you certainly are under a load of stress right now. We all go through it and the memory does get better when we start relaxing a little.
A lot of the medications that we are given to treat the BC can also effect the memory. Most of these 'memory losses' are more like lapses rather than losses as within the space of two minutes in a conversation you will remember the word, item etc and then when you want to repeat the word it's gone..........all very frustrating I know but try not to worry too much about it.
Take it easy if you can.
Love n hugs. Chrissy
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Thanks Chrissy.. What really made me worry about my memory is I've been waiting for important papers I have to fill out to arrive in the mail.. I've been checking the mail box every day for them .. started to think that Australian Post had lost it.. delivered it to the wrong house.. blah-blah.. then.. at 2am a couple of nights ago I woke up , and had a "light bulb " moment.. I remembered the letter had actually arrived a week ago.. I'd gotten it out of the mailbox at the very same time as a visitor pulled up in the drive way.... and put it in a drawer in the office desk as I walked past to read after they left... Oh dear.... Hubby is laughing about it... and I guess I'd laugh if he'd done the same thing... But...
I guess it's a good thing that I did remember in the end... Even if did take me a week. HaHa 😃
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