Australian Sisters
Comments
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Lol Sue! I know what you mean. My house gets a luck and a promise until someone is coming and then it gets the business !.......lol.
It's getting closer and I'm already thinking on what to pack .....lol......I even went out and bought some new shoes as I didn't own any summer ones. I've been wearing them in the house for a few hours each day so they won't make my feet sore when I get there.
Love n hugs! Chrissy0 -
Chrissy - it gives me a lot of pleasure to look at the freshly washed floors - no guarrantee what they'll look like by the time you get here
I need new summer sandals - might have to take you out to the DFO before the others arrive.
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DFO? You mean I should bring a reasonable supply of spending money?!....... Oh okay......sounds good to me....... I can always find something I 'really need'........hahahaha!
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Actually I might take you grocery shopping
If we're meeting Saturday, then I'll need to do the shopping before that.0 -
Grocery shopping is good.......we all need to eat!.....lol. What ever you need to do is just fine with me, you lead and I'll follow......lol.
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Lovely little conversation happening between Chrissy & Suzie......sounds like lots of fun & lots of shopping.....& a nice relaxing time in Suzie's spotlessly clean house....:)
Hope you all have a blast....
Karen x0 -
Home again . I always love sunday mornings at church . I can relate to the cleaning and Yes Peter does the same thing !lol They don't see the cleaning necessities the same way we do ,do they ? Although they do try or is it they are trying ??? Still working that one out ! Must say though I think the cleaning fairy has gone on holidays .She has by passed Gatton ! Thanks for the encouragement . I think my last post was the pain talking . I have never been a big medication taker and it is frustrating to adjust to regular pain maintenance .I am grateful for the knowledge I am in good hands and will feel more confident when I have a clearer knowledge of exactly where I am at with cancer .Where in Brisbane are you Susie Q?@ Kate .My mind is boggling at the concept of 75little darlings all in the same place at the same time ! Lol Better you than me ! Do you enjoy photography ?Thanks Chrissy for your lovely words . Bye for now from Gorgeous Gatton .
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Sue and Lynda, are you coming to Georges at Eagle St on 7th at 6 pm?
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Racy - I didn't know that's where we were going.
Vanstrada - I'm in the inner northside of Brissy. Racy and Lyndal both live here too.
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Kazzie - only the floors are spotless
I'd need a month to spring clean everything.0 -
I'll be comng with Kate and Trisha Racy. We will walk down from the apartment we are staying in.
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Chrissy and I will be there - I hadn't been reading the get together thread
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Goodness everyone has been busy.
Welcome Vanstrada, sorry to hear you have a second setback but this is a wonderful place for support.
As the others said, your surgeons and onc are the best for advice. I used to write a list and leave a space to write the answers as the doc gave them. Otherwise I would walk out and forget what he had said.
Kate, the photos sound fun. I hope he is not a grumpy Santa.
Midnight I hope you get everything sorted. The big steel producers are all shutting down here for a month over Christmas. They have said the economy doesn't make it worth producing - pretty scary. At least I will have DH home for a change.
Hello to everyone, wishing you big hugs x
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Thanks kylie . Hopefully will know more after tomorrow's cat scan .
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Just under 6 weeks ago I was told after a biopsy I have Breast cancer . My initial reaction was ok what happens now ? Within a week I was meeting the surgeon that would changing my life forever . He told me and I didn't take it as a promise or a guarantee ,but I did have confidence in him that what he was telling me was a good thing . He said surgery will remove all the cancer and I would be fine and Chemo was not a concern . as I believed in him I took that on board and went on with the flow .Less than a month later and I had the surgery . Left breast off as directed and 2 positive nodes identified . Ok no biggy I had been aware I have cancer did all the research and worked on recovery for me .Suddenly strangers start calling me I am part of your team and you have to have this test and another test and scans etc ! What ?? I am part of ateam ???? Who is on my team and what does it all mean . 2 weeks after surgery finalley get told results . They are talking so fast I can't absorb it all at once . Head is spinning what was that he said ???? Registrar who is all knowledgable and works with the specialist tells us one thing (another surgery I have to have ) then another specialist comes in looks at my report .Oh I work with your specialist and know all about you > Hello you may know all about me but you don't know me and I have no idea who you are !He says oh no way Not necessary for another surgery . Alternative treatment Hormones Radiotherapy or even Chemo ! Now we are totally confused and they breezily fly off saying see you in 3 months ! What just happened and what are we supposed to do with all that information ?Then strangers calling up you need tests etc . What are the tests for ? For your cancer ! My cancer was supposed to be all gone with my left breast. Then today I get a phone call you need to make a appointment for this test you have to have within this month! What test and what is it for ? For your prelude to Chemotherapy ! Chemo ?? What chemo ? Chemo less than 6 weeks ago wasn't even on the table ! Now supposedly I have a oncologist who again I haven't even met yet and he is organising my life ! Who on earth am I supposed to be talking to ???? I am going up to the hospital tomorrow after my cat scan ,who is the best person to talk to ??? Things seem to be happening faster than I can keep up with ! Thanks for letting me vent . Confused in Gatton ! lol
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Hi Vanstrada
It can be quite confusing. Your surgeon should never have told you that you would just need surgery and it would be all over. Breast cancer just isn't that simple. The fact that you have 2 positive lymph nodes means that your cancer had started to spread, and that's a warning sign that chemo and rads may be needed.
Also - it takes time to do the pathology on your tumour to find out if it is HER2+. Usually more than a week. If it is HER2+ then chemo is defenite as you will need Herceptin and in Australia you cannot get Herceptin on its own - it must be administered with chemo.
I'm not sure what tests they are asking for, you will need to ask what the tests are specifically for. When you go to the Hospital it would be good if you can talk to an oncologist who can explain what your final pathology was.
Make sure you take someone with you who can write everything down.
You will need to ask:
- What was the final pathology? Was the tumour HER2+? What was the ER and PR receptors.
- What will the impact be of 2 positive lymph nodes? Does that mean you will have to have an axillary clearance? (that is where they take more lymph nodes from under your arm to see if the cancer has spread further) If they intend to do that, then you will be at greater risk of lymphoedema.
- Did they do a sentinal node biopsy? If they did you would have been injected with a special radioactive dye just prior to your surgery so that they could find the "first" nodes in your breast, they are the most likely to have been invaded with cancer if it had started to spread. If they did - why did they only take 2? or did they take more and there were only 2 that were positive. If that's the case, and say they took 6 and only 2 were positive, then you may not necessarily need an axillary clearance.
- How big was the tumour in the final pathology - and did they get good margins? That means that there was enough tissue around the tumour so that they are confident they "got it all".
- If they are saying chemo is needed then what sort will you have?
That's all I can think of for now - others may have something to add.
Good luck and get a copy of your path report (you are entitled to it), and let us know how you go.
Trish
xoxox
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Vanstrada, Trisha is totally right. I was told I would just need a lumpectomy and radiation, but when my hormone status test results came through as being HER2+ that changed everything and suddenly I was being booked in for chemo.
Do you have a friend or relative that can go with your for your appointments and take notes and be your back up to recalling converstations with your Drs? I know I would have been lost without my SIL who listened reallyl intently right from the get-go to all the nitty gritty details. Heck I was so bad at actively listening that I didn't even hear my GP tell me I had cancer, so I came out after the appointment with loads of test request saying, well IF I have cancer... and my SIL put her hand on my shoulder and corrected me with, Kate you DO have breast cancer - that is why you are going to have all those tests. So it really does help to have someone with you. There are breast care nurses too, which I am hoping you have been put in touch with. You should have been assigned to one. They sit in on the multidisiplinary meetings (all the Drs involved in your care, BS, Oncologist, Radiologist etc) so your Breast Cancer Nurse will have all the information at hand regarding treatments etc. She would be a good person to contact and have a face to face meeting with (remember to take someone else with you) and write down all your questions before you meet with her.
Sorry you are at this terrible stage where everything appears to be happening at hyper-speed and you are just going along for the ride. I remember thinking at the same time of dx, that I was a helpless passenger on a bus, sitting there with the world whizzing by but absolutely no idea where the bus was going and when it was going to stop. Things should calm down once you begin your active treatment and you will know what you are facing.
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Hi Vanstrada
The other girls have given you excellent information & advice.....:)
I too was told at the beginning of all this that I would 'probably' need a lumpectomy & radiation, however, as the other girls said, once the path report came through it changed the treatment plan......mastectomy & chemo.
Yes, you are entitled to you pathology report (I have all of my results from pathology & scans.....always ask for a copy) & another option is go & see your GP. GP's have access to the pathology results online & he or she should also be able to answer a lot of your questions for you......my GP is my lifeline & I don't know what I would do without her!!
You will then be in a better position when you go to your appointment with the oncologist.....& don't forget, you can always get a second opinion if you're not happy with the first one.
Good luck & I hope your confusion is somewhat eased soon.....we all feel that way in the beginning..
(((Hugs))) Karen x0 -
Hi Vanstrada, Can you find out if your hospital has a breast care nurse that you can talk to? A lot of centres have nurses in that job to help patients....
Jenn0 -
Ive sent a pm to Vanstrada.
Sorry I havent been posting much lately, absolutely flat out at work and with (yuck) paperwork, but I am reading every day. Had my annual blood tests this morning and see the BS on Wednesday to hopefully get the official all clear for another year.
Cant wait till the Brissie get together (and a couple of days off work haha)
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Hi Vanstrada, from someone living in Maryborough. I have had to travel to Bris to see my Onc and rads treatment for the last four years.
At my first app't in Nov '08, I was introduced to Michael, my Cancer Care Co-ordinator. He is a qualified nurse but he is my liason between the medical system and myself. Anything that causes me problems healthwise, or in the system itself, Michael is my 'go-to' man......I email, text message or ring him at any time and he has explained or sorted it out within minutes........Monday to Thursday - 8am-5pm at least.
I wonder if you are attending Toowoomba Hospital whether they have the same set-up...........but maybe someone forgot to mention it to you? I hope so for you, as it is so reassuring to know that someone is there to sort things out/explain things for/to you.
I would ask at your hospital if there is such a person available for you or, if not, where your breast care nurse is.
Sheila.
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Phew . Have taken quite a few deep breaths ironed out the frustrations and did contact my Breast care nurse who was blissfully unaware that I was having a meltdown ! Lol . But now she knows more facts she is seeing me tomorrow before my ct scan and she will help me understand more . In my defence I am still struggling with PTSD from surviving Grantham and the counselling I was getting for that has stopped recently . Part of the PTSD is I have no memory retention ,literally in one ear aand out the other ! On top of that I am extremely hearing challenged which can't be fixed by hearing aids so if you are talking and i can't see your face I lose the conversation,and to add to my woes last Wednesday for the appointment quite honestly I was in agony with the drain problems and all I really heard was we are taking out the drain ! marion my nurse is organising counselling through the hospital for me and she will make sure she can be with me . My husband Peter does come in with me so I am not on my own but it does feel like I am back in the water at Grantham with all that muck coming at me and I am screaming for help !Then on Wednesday Peter has to have a skin cancer removed and last year similiar he was diagnosed with melanoma ,in fact we can compare chest scars !lol . Feels like another tsunami in my life at the moment .! Thank you all so much for your advice and kind words . I do realise it is really early days for me and I will learn more coping skills as I go along . Good night and may your dreams be pleasant ones !
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hi all
got appointment with my surgeon to talk about possible implications of a positive genetic test for cowdens.
also going to talk about possibly removing the other breast and reconstruction but that may not happen until next year by the time the results come back. tossing up between expanders and tissue recon which im told is a longer recovery time. will let you know what he says.
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Hi Vanstrada.
Wow you've had a hell of a time. I was lucky that my surgeon had a great bedside manner, but my lifeline was initially a good breast care nurse and then a fantastic oncologist.
I agree with everything the other girls have said. You will find that you will eventually primarily have contact with one professional at a time, although seeing many. Surgeon during the surgery phase and healing, oncologist for chemo, and radiation oncologist during radiotherapy, usually in that order, The fact they are in a team should be a good thing, although you have been bombarded very badly so far. It means that they share the knowledge about you and bounce ideas off each other. There are usually a number of each type of specialist in the team, but you can always seek external opinions at any time.
Regarding pathology reports, I would also ask about the grade. Grade 1 is very slow growing, 2 a bit faster, and 3 is fast growing and aggressive. Mine was grade 3 so we hit it with all the big guns from the start.
You will also want to know whether it is hormone positive (estrogen and progesterone) which will allow you to have targeted therapies in addition to regular chemo. Also whether it is HER2 positive which also gives you access to the great targeted drug herceptin which has minimal side effects. If your cancer is not positive to any of these, it will be called triple negative. I am TN and so I only have chemo options left. There are threads on this site for all these subgroups.
Lymph nodes. If you only had a couple of under arm nodes removed, and there was cancer in both of them, they will want to do an axillary clearance to get all the effected ones out and to see how far it has spread. They will cut below your underarm and you will have a drip in for a week. If you have had the axillary clearance, you need to know how many nodes were taken and how many had cancer in them. I had 16 out of 18 with the bugger in them, but my sister only had 3 out of about 20.
In terms of tests, and I've had a few, here is what I know.
A CT (Cat) scan, usually covering your chest, abdomen and pelvis, will show whether the cancer has spread to any vital organs like liver and lungs.
A bone scan head to toe, will show whether it is anywhere in your bones.
A PET scan is a great all-over scan that shows any sign of intense activity in the body, but Medicare doesn't provide for them so you may not get one of those. You will probably have a CT and bone scan at the start and then after treatment finishes a couple of times.
You will have blood tests that show one of the cancer markers, CA-15. When these are high it's a worry, low is good, but they are so notoriously unreliable that oncologists only use them as a flag to do other scans.
The oncologist will also use your blood tests to check your white blood cell count and liver function to be sure you are strong enough to handle chemo at that moment.
If you need to do a heart ultrasound (forgotten the name) again they are checking that your body can handle chemo or herceptin.
All of these tests and pathology information are used to classify your cancer;
Grade 1-3
Stage 1,2,3,4 a,b c according to the size of your tumour, and how far it has spread
er/pr/her2 status to decide if targeted therapies are an option
Specific pathology of the tumour (way too technical for me to ever understand) to decide the best combination of chemotherapy for you to have.
When my sister was diagnosed, I told her it was like getting on a train. After you have done your research, got your head around it all as much as possible, you just get on that train and take it through about a year of various treatments and tests. It is very scary but it does get better.
Sorry for ther long post....are you still there?...but this is something I know a lot about, and I have always felt better when I have known what was happening. Please feel free to ask us all anything.
With best wishes,
Angela
Ps; Trisha-Anne, Chrissy-b, I think the combination of all these ladies' feedback is so good, that maybe we should keep it for when the next new Aussie girls join us, and unfortunately they will. What do you think?0 -
Thank you Angela . That was really helpful and I do feel a little less apprehensive . The Bone scan I had on Friday and a CT scan I am having tomorrow .The cardiac ultrasound is the one I heard about just today and they are booking that in within the month .Ironically when I first met my surgeon the initial interview was marvelous and I had heaps of confidence in him and what he said . But I haven't seen him since my operation and I am surrounded by strangers . But i do have enormous confidence in my Breast care nurse but lacked the confidence to contact her and she helped me realise that I still am dealing with a load of things instead of being able to focus on just one thing .Now i understand her role in my life I will be able to touch base with her more . Hoping to help you all understand me a bit better . The Grantham disaster we survived is so similiar to this its not funny . And one of the wosre parts was there were so many reassurances that we had all these resources available to us to help us recover . When we needed them there was nobody ! To a certain degree I felt the same thing was happening now which was not true . . But I have learnt alot from Grantham and reaching out to this site and talking to Marion more are great steps in my recovery ! A work in progress ! Thanks again .
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Hi Vanstrada, you can also phone the Kim Walters Choices service in Brisbane to talk, get advice and counselling if you need it. These services are free and well worth getting in touch.
You can also get free counselling, and advice I think, by calling the Cancer Council.
I'm not familiar with the way services are organised at your hospital so can't offer advice on navigating the system but it is good that you have found your breast care nurse.0 -
Vanstrada, can you add these two questions to ask your surgeon, and oncologist and nurse about that extra surgery?
1. If I don't have the extra surgery taking out more nodes and there are still some cancer cells under my arm, will they be taken care of by chemotherapy and/or radiation?
2. If I do have another surgery to take out more nodes will I then need less treatment and what are the potential risks to me from having more nodes taken out?
regards Jenn0 -
Thanks Jenn. Good questions to focus on .
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Excellent post Angela and explained so well. Definitely a keeper for future reference.
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Wow girls what fantastic info you have all given. I totally agree with Angela it would be great if this info was easily available to all the newbies. Our system is so different from other countries and you covered everything so well.
Gosh to have had that info and list of questions would have been priceless. I had read all the BCNA books and studied BC online but I didn't know what questions to ask about how it impacted on me personally. I know I would have made some very different decisions if I had known more about what was going on.
If anyone knows a way to make info easily accessible to everyone without having to read thousands of pages of discussions would be great. x
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