An international resource Forum?
Hi,
My 1st post here.
Ive been wading through this site for a number of days, too bewildered to post. Im about to have a consultation at the hospital for possible recurrence, today. My emotions are all over the place.
Such a massive and wonderful resource this site is! There is of course info that affects, and is pertinent to, every woman dealing with BC. What I am finding, though, that unless youre American, some of the general advice on getting care/ whats available/ and generally the standard procedures of your whole Medical system, doesnt apply to us "outsiders". Now I know we are NOT outsiders, as when this beast hits anyone worldwide, we all share something the same, but Im still feeling a bit "lost" in here.
I wonder if there could be a seperate Forum/updatable resource, or something, where people could just connect AND put forward what they have to deal with in their countries, like getting treatment, and procedures, what things are available etc. This could also be a valuable resource and a stop off point for those who want to get an overall view of whats available medically, Worldwide.
Thanks, Musical
Comments
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Hi Musical, I am sorry you are going through this all over again.
Although I lived in the US on and off for 20 of the last 40 years, my cancer was discovered in Japan. Because of language difficulties, I decided to have my surgery and subsequent treatments in Singapore.
So, yes, count me in. Let's have an international forum.
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Sounds like a good idea.
TokyoSing, I know what you mean about language difficulty. Even though I've been living in Israel for about 27 years, my medical Hebrew is weak (well, that's not the vocabulary I needed before bc!). Fortunately, the docs I've used know English, and my med onc is also a transplanted American so that helps.
Leah
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Thanks TokyoSing for your kind thoughts
Yes I guess there would be a number of things that could be up for discussion that I havent thought of.
As far as my knowledge goes, in NZ we have a free system where everyone can go to get medical care. However the catch is that there are loooong waiting lists, and the system is stretched to the eyeballs.
Another neat thing I reckon would be a good idea, is the use of polls. Just one example Id be especially interested in how long people have to wait for treatments....say, from the 1st time you felt something wrong - to the initial doctors visit - to tests and what tests - to diagnosis - to Surgery - to Chemo -to Hormone Therapy - to RT .
Just my 2c
Cheers
Musical
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Hi Musical, Although Japan and Singapore both have socialized medicine, I did not have to wait long. In Japan, even for an "outsider", from the time my tumour was discovered in an ob-gyne's office to my subsequent biopsy and diagnosis was less than 2 weeks. But then, the surgeon could only schedule the mastectomy 4 weeks after that.
In Singapore, one also has the option of "going private". Since my husband's insurance covered most of the costs, I opted to go to a doctor "in the private sector" who had treated my sister 6 years ago. He was fantastic. I saw him on Tuesday (of course, I also had all my Japanese lab results with me). I spent the next 3 days going through more sonographs, scans, MRI's, even had a pap smear and a dental cleaning (just in case I had to have chemo). My surgery was on Saturday and in 2 weeks, after his physician wife took care of my rehabilitation - stretching, exercises, I was flying back to Tokyo.
My Oncotype Dx results arrived a week after I arrived in Tokyo, my doctor called me on the phone with the positive results. My next visit to Singapore, a month after my mastectomy, he started me on Arimidex.
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We also have socialized medicine here, and can have long waiting lists. However, when the sitution warrants it, things can move FAST.
I found the lump, went to my pcp who sent me for a mammo and U/S. That was on a Thursday. The breast screening clinic had me in for the mammo and U/S on Sunday, and as soon as the doc saw the mass on the U/S screen he did a core needle biopsy right then. Biopsy results took 1 week, and surgery was 3 weeksafter that. Chemo was slightly delayed due to a post-op infection so started 6 weeks lzteer, and rads was 8 weeks after chemo finished.
I'm now facing a prophy mast for the other side (extensive fam history) plus DIEP recon. I saw the PS for the first time in March and was told surgery would be in Sept or Oct. It will be July since I was fortunate enough to get someone's cancellation. I will also be having an ooph (fam history includes ovarian ca) and my gyn said it's usually a 6-8 week wait for that.
Throughout this whole bc journey I have felt very well-taken-care-of.
Leah
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TokyoSing and Leah_S , thankyou so much for your info. This is great. (Leah ...NEAT to see someone from Israel here, not that the reason is great but You know what I mean
.) Yes in NZ its seems to be Private Insurance or Waiting in the Public system. Sometimes its just as long to go private as apposed to "going public". Many people cant afford P Ins. With the Public Hospital System it largely depends on what it is and the urgency as to how quickly things move.
I dont have PI but we've paid our taxes just like anyone else. My "run" with the Public System was, to cut a looong story short an ORDEAL. IT TOOK 5 MONTHS FROM THE DATE I DISCOVERED THE LUMP TO SURGERY!!!!!!!!
(Mods, I could use an angry emoticon here please but cant find one) There were dramas and holdups galore and some were because I "fell into the 1% catagory" and others were needless mucking around (slack admin) at some stages, and I still havent got my head around it all, as some of it just "did my head in" at the time, and Im still fighting to see through the fog of it all. Fortunately I have an EXTREMELY supportive Hubby and also good support from family. I have to say though, there have been some absolutely wonderful people through it all but collectively the whole Medical System has a problem of the left hand not knowing what the right hand is doing administratively, and hence you can get anything from conflicting stories to botched appmt times.
On the one hand Ive just been told (yesterday) I have to wait 6 months for a Hysteroscopy, even though my Doc and Specialist want one now, and on the other hand this time for my Breast check it looks to be different!
Doc on Monday ...but I discovered the suspicious thickening or lump (???) on Friday AFTER 5pm. .... (yeah so whats new??? I discovered my 1st lump that way. ) What??? is this that 1% thing striking again?
Yesterday I had my consultation with the BS and they put Urgent on the form for me to have an US and possible biopsy. If I couldnt get in yesterday then Id be squeezed in somewhere today. Well someone cancelled and so had 2 trips to the Hosp. yesterday. I was really stoked with how things have moved this time. I really like my GP (General practitioner or Doctor) and he's really getting onto things for me. Results SHOULD be in mid next week for biopsy.
Leah Im looking at having the other side off too (is that what a prophy is?) . Hope all goes well for you and great that you got good treatment. Im not small and I find it is starting to give me neck aches and back aches and I find the Prosth. is just too uncomfortable to wear for anything over 2 hours. The straps/buckles irritate my shoulder blade. I too have a strong family history and my siss died from this mongrel of a disease just gone 5 years ago. I and my elderly mother were her caregivers and now all this. Very tough on my mum. We were both very close to her and not a day goes by that I dont miss her.
Musical
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Oh, Musical, I'm so sorry about your sister. I have 2 sisters, I love them dearly, so I can imagine the depth of your pain.
Yes, prophy is short for prohylactic mastectomy. I don't have the problems you do with the imbalance since I'm quite small (AA cup) but the thought of another cancer on that side.... I don't have to tell you.
I hope for b9 for you this time.
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One comment the US person told me was he thought it wasnt cancer and just fatty tissue. I have very dense breast tissue and its really hard to know. I remain VERY cautiously optomistic. The Prophy issue is really prevalent in my mind, because there seems to be a lot of plusses. If this time turns out to be nothing, and I act now, then they wont take any lymph nodes out (I take it). If I wait and get it back, theres potential for real dramas with Lymphoedema. I already have a bit on the R Side. I wear a sleeve.
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Dear Musical,
I am also hoping that the US is correct, and that it benign and doesn't need any further treatment. You know most surgeons now do sentinel node biopsies, excising only 1 node ( the sentinel) and if that's clear of cancer, then they do not need to take anymore out. There's no danger of lymphoedema.
I am so sorry about your sister. My younger sister was also diagnosed with DCIS 6 years ago. Thank God, she is well. Have you considered doing a BRC1&2 genetic test? Because our family seems to have 1 or 2 BC's per generation, my Dana Farber Oncologist has asked that I get tested. I am waiting for the results.
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Leah I forgot to thank you for your well wishes. (duh) TokyoSing thankyou for your response! Ive just recently heard about sentinel nodes but dont understand how it all works. When did that option become available to you? I had my Surgery on 28thJuly last year. Im going to mention it both for the sake of last year (not that I can do anything about it now) and for the future. I have an appt to see BS on the 12thMay.
Yes I am thinking very much about the genetic testing, and had the paper work given to me last year, but to be honest, I just havent been in the right "head space" to be able to cope with it. The feeling Im getting from the paperwork is that in NZ you have to be a "real special case" to get it, but that might be overstating it I dont know. We'll see. In the meantime, I hope yours comes back Negative : ).
Seems I have a few questions I need to settle with my team as another poster who know heaps more than I do has helped me understand and has kindly pointed out the stats for DCIS are in conflict with what my stats say. I'm going to have to find out why. Whether its a national thing or not Im not sure.
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Dear Musical,
Sentinel node biopsies have been around for years. My sister had one 6 years ago in Singapore. They inject a dye into the breast and by observing how the dye empties, they can determine which node is the "sentinel", the first "go-to" node. In my case, they took that node out at the beginning of my surgery and the lab examined it right away. Since it was cancer free, my doctor knew right there and then that the chances of the other nodes being infected was very small, less than 2 or 3 %. I am a professional musician and my arm was of utmost importance to me. I was really grateful I did not have to have more nodes excised.
Good luck on your next appointment.
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Oh What instrument/s do you play Tokyo? Hopefully you wont EVER have any drama with your arms. Thankyou for the info. Quite frankly my BS was quite amazed that there were no lymph nodes involved, with the size and the aggressiveness etc. Perhaps thats why they took 13. It will be yet another question I will ask.
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I have to warn you, there are some ladies who have developed LE even with only 1 or 2 nodes taken. The risk of LE is much lower with SNB but it's there.
In my case, the sentinal node had cancer, so a full ALND was done - 6 nodes positive. That's why I had chemo and rads. We threw everything at this beast.
Leah
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Dear Leah, thanks for the warning. My yoga teacher says she wears a sleeve in the plane when she travels. I am seeing my doctor this week. I shall ask him. Musical....I play the organ, those great big ones with thousands of pipes.
Good luck both of you...
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I also wear a sleeve when flying, and I am adamant about no bp or blood sticks on my at-risk arm.
Leah
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Hi,
After brushing up on some of my info, which I was unable to digest properly when I 1st read it (in one ear and out the other...syndrome) indeed I understand a lot more now. Yes we have been doing the Sentinel node thing for a while.
Leah, Im sorry to hear you had to throw everything at the beast, just like I did. I hope all things will turn out OK for you.
Tokyo, wow those huge pipe organs are AMAZING. Theyre very very "synthesizable" (my word) and I have some wonderful synth patches of all sorts of organs.
Learning to live with Lymphoedema is a hard call. I really feel for people who have to deal with this. Mine seems to be getting slowly better. Went to PT yesterday and after a measure up, overall the size is down, but Im keeping on with the little it of massaging I have to do.
Musical
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Hi Ladies, Germany calling !!! I'm an American living in Germany almost 22 years now.
I was diagnosed with IDC left side about 2 weeks ago. I have my appt. with the Surgeon tomorrow to discuss my Operation. As far as I know the Lumps are very small and the Sentinal node will be dyed and taken out for the lab to check out. If that Node shows ( during operation this will happen ) cancer cells , then 8 other nodes will be removed as well.
Nice to know theres a forum for us inties. Nice to meet you ladies.... wish all of you the best of Luck.
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Hello from across the pond.....or many ponds.....
In UK we also have socialised medicine and often long waiting lists; however, there are guidelines for serious things like bc.You must be seen by the hosital within 2 weeks of first visiting your GP and should get a firm dx within 2 weeks.Surgery should be within 4 weeks of dx.However, there are often regional variations to this, and many Health Authorities have their own interpretation of things.So it is not uncommon for people to have longer waits.I have heard of horror stories of people waiting for many months to start radiotherapy, for example.
Here you can 'go private' too, but not many people have private health insurance.
If you are treated at a large inner-city (teaching) hospital,your chances of getting up-to-date treatment are a lot better.I was lucky and got on a chemo trial, and thereby got taxotere at a time when it was not licensed here for use in early bc.
We have a licensing body called NICE (National Institute for Clinical Excellence) which often does not allow various cancer drugs to be prescribed - cost is a big factor.There is also a 'postcode lottery' whereby some health authorities will allow certain drugs to be prescribed, but not others.Not nice.
Monisch - I hope everything goes well with your surgery.Viel Glueck!
Sam
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Lovely to hear your replies ladies!
monisch, I wish you all the best for your op and hopefully you wont have to have more nodes out afterwards!
sam52, thanks for that, it sounds similar to NZ. At the end of the day it all comes down to the mighty dollar, and I think where health is concerned it shouldnt be like this, but I know things have to be paid for as well. WHat Im against is the fat cats who make more money than they should AND at the expense of peoples lives....and I dont think fat cats are just a product of my imagination either!
At the mo Im waiting on a date for my Prophy Mast., and Ive been told by my BS that he would like me in B4 6 weeks, but if someone else "more urgent" than me comes up, then my date will be put back.
Im really greatful to all your responses Ladies and gents (if you are watching, guys) as hopefully this will keep us abreast (soooorry no pun inteneded
) of the facts.Musical
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Hi everyone,
I'm in Israel (originally from NZ) so have something in common country-wise with a couple of you (and of course, there's the BC which I have in common with all of you :-)
I also felt things went a bit slowly here in the beginning - partly because of lack of info from drs (e.g. they gave me a referral for a biopsy as soon as the mammo/US results came in, but neglected to tell me to stop taking aspirin, so i had to delay the biopsy by a week). then i had to wait 3 weeks for a PET/CT appt. but as soon as those results came back, i saw the onc same day, and started chemo a week later. so it went from being sooo slooow to suddenly going too fast.
I have my 2nd round of AC on Monday (ACx4 2-weekly, then Taxolx12 weekly, then surgery, then rads, then tamoxifen). Long road ahead...
A couple of questions for international members:
- Did you have a MUGA scan? I wasn't offered one before i started chemo (only had an echo) and they seem to be standard in the USA
- Anyone done research on whether to get Taxol or Taxotere? In Israel, Taxol is the standard (because Taxotere is more expensive - they only give it to you if you have a bad reaction to the Taxol). My insurance will cover the switch to Taxotere if I want it - I can't work out which is better (if at all)
Take care everyone
Nicole
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Hi Nicole, nice to see you here. Whats a MUGA scan? How long have you been in Israel? Where Cancer is concerned I only have 1 motto, you cant act soon enough to deal with this monster! The more pro-active you can be the better. Its amazing how different things can be depending on where you are.
All the best and thanks for your input.
Musical
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Hi everyone -- Canadian popping into this international thread!
Just want to answer a couple of questions. A MUGA scan measures the flow of blood through the heart, using a radioactive dye and a gamma camera. Doesn't hurt a bit! It's prescribed here if you are going to be getting certain chemo, such as epirubicin, or immunotherapy (herceptin).
As for taxol vs taxotere: Some studies have been done showing weekly taxol is somewhat more effective that tri-weekly taxotere or taxol. One caveat about taxotere: up to 6% of patients experience permanent hair loss. Weekly taxol (over 12 weeks) seems to also have fewer SE's.
Best wishes to you all!
Linda
P.S. I had 3xFEC and 3xTaxotere. My hair did return, fortunately!
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Hi lindasa, Thanks for filling me in. I havent heard of those (MUGA) in NZ unless they are called something else or I simply just havent heard of them. Sometimes here, (depending largely on who you are dealing with) it pays to ask, or you just dont get told.
After the horrid reaction I had to the MRI dye recently, (urticaria or hive type itchy lumps) I'll be dubious about what they pump into me.
I'm SOOOO pleased your hair has returned. I cant even begin to imagine how cruel that would be if it didnt. Ive only just read about the Cool Caps, and I dont know how long this has been an option, but from the bit I read it sounds very successful and a wonderful thing. If I hadve known, I most definitely wouldve enquired here about it. My hair was about 2 feet (from the longest part at the top of my head) and thick and straight, and I can tell you it wasnt nice the day I had that shaved off. Now I have a mass of curls about 3 " long and it seems to be taking forever to grow. I must find out what is the "norm" for others .. heh, if theres anything normal about this bloom'n disease.
Cheers
Musical.
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Hi everyone,
thanks for the replies - I appreciate it. I have an appointment with the onc next week and will ask her what she thinks too.
Had my second round of AC yesterday and felt awful aftwerwards (including 5 attempts by 3 people to find a vein, and 2 burst veins), but this morning I woke up all OK :-)
A bit more info for internationals - I love freebies, but most of them seem limited to USA, and I haven't found anything local. So here is my list of USA freebies and services that you can also get while overseas:
1. www.franceluxe.com will provide a beautiful scarf or headwrap tochemo patients. if you are not in USA, you need to pay postage fees, or you can give them a USA address of a friend and they will ship it to them instead for you.
2. www.chemoangels.net provides a buddy service where they pair you up with someone who sends you weekly messages, cards, and small gifts to sheer you up while in treatment. you can be located anywhere.
3. www.thelydiaproject.org provides a handmade tote bag to patients anywhere in the world - they look lovely.
if anyone has any other ideas for cancer freebies, i'd love to hear them :-)
Latte
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Hello from Greece!
Good idea about this forum.
I went through it all last year and am now dealing with lymphedema which is a real pain. Most and the best info I have got has been from this site-it was a real comfort in the early days and I am always refering back to it especially now I have this lymphedema.
People in this country tend not to speak about cancer and I know no one personally .
The diagnosis and treatment went very quickly as I was able to pay. The chemotherapy drugs were paid by the insurance -they are very expensive-cold cap is available at a price(I didnt do that ) and the radiation I paid for as I couldnt face the cancer hospital as its too depressing.
There is a free health system but I wasnt risking it .
I think the protocol of treatment is the same all over the world and we have some very well educated oncologists but the nursing system leaves a lot to be desired.
Now I have 3monthly blood tests and yearly body scans and mammogram and of course the dreaded arimidex-all is paid for by the system.
Heres wishing all you international girls the best of luck and if anyone is over my way (Crete during the summer ) I would love to meet you .
Be Well
Anna
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Latte, Im so sorry you had a hard time with the veins and the chemo. My Siss had AC chemo and it was the PITS . I had FEC and it wasnt the best either, but at least I didnt pewk. My veins are also "evasive". Now heres something worth a try at least for blood tests anyway, which we all have to face on this roller coaster ride, and especially between chemos. Ask them if they do "finger pricks". At the time I was having chemo last year, my veins went from being pretty impossible after the 1st chemo, to totally impossible by the 4th chemo. After an hour of various "tricks" we tried again after lunch and nah, no go.
They had to go into my at risk arm !!! Yiiikes.... I would never have allowed this if I knew then what I now know about lymphoedema...... but for bloods, I was told by my head onc, that everything they needed to know could be got out of a finger prick. Wished they had told me that from the get go, and it wouldve saved quite a few dramas. To this day this is how Im getting my bloods done and it is SOOOO much kinder than being a flippin pin cushion all the time. The only thing for me is I have to travel to the hosp. to do it everytime I need blood's done. I dont care. Its waaaay worth it. Not everyone apparently can do the finger pricks. It doesnt look that hard to do though. Just a thought, and if anything can help with dealing with this monster we all have to face, then its good.
Oh and great idea listing the freebies.
annadou , really sorry to hear you are battling with the lymphoedema thing. Indeed there is a wonderful resource here and I've learnt quite a bit in the Lymphoedema forum and threads. Thanks for sharing your experiences and what's happening in Greece. I agree, sometimes the medical fraternity, in part at least, leaves a lot to be desired. I guess somethings are the same world-wide. You'll always get a nurse here and there whose bedside manner needs an overhaul.
Musical
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Nicole, I didn't hear about those freebies, but your idea of listing them is a good one.
Where are you having your treatments? I did my chemo at Shaarei Tzedek and was very pleased with them - all the onco day nurses are angels. Also, the doc who does the blood stick can get a vein on the first try every single time - for that alone it was worth going there! I'll be going back starting this Thurs once ever 4 weeks for Aredia since I was just put on that and Femara when bone mets were found .
I did taxol - 4 treatments every 2 weeks. I didn't like it but then again, what's to like about any chemo drug? My friend kept saying "Taxol taxes all". Boy was she right.
BTW, did you know that while you're in active treatment you're eligible for disability from Bituach Leumi? If you haven't applied, speak to the social worker at the hospital.
Best of lucki.
Leah
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Hello, all!
What a good idea this forum is! Haven't seen it until today. I'm in the U.S., but am often asked to find lymphedema resources in dozens of countries around the world. On a very practical level, locating well-trained therapists anywhere in the world can be done with this link to the Therapist Locator. At least three of the schools listed there are international and train therapists all over the world, so following the links will get you current listings of available therapists:
http://www.mylymphedema.com/therapist.htm
Current lymphedema treatment, called Complete Decongestive Therapy, was originally developed in Germany -- lymphedema treatment in Europe is way ahead of that in the U.S., and it has spread from Germany to Asia, Africa, the Middle East and (only recently) to parts of Latin America.The LymphedemaPeople website offers lymphedema information in a couple dozen languages, and also lists of lymphedema centers, doctors, researchers and organizations in many parts of the world:
http://www.LymphedemaPeople.comHope that helps -- those of us who are bc Sisters know only one world, for sure! Be well,
Binney -
Leah - Thanks for the info - I'm being treated at Assuta in Tel Aviv (I'm with Maccabi). It's nice and small, and I think the chemo is pretty much the same everywhere. Most of the nurses are nice too. I'm getting a port put in though - i decided -i still have 14 more scheduled treatments to go.
I have the forms for bituach leumi - I need to finish my sick days from work before I can apply though - thanks.
I had my second AC yesterday, felt awful afterwards, but woke up this morning and felt completely normal! I feel like I can enjoy this holiday at the moment :-) at least for as long as I feel like this.
Musical -The onc nurse told me to insist on finger pricks for the WBC blood tests, and I did the first one 2 days ago - it was a great idea and I'm glad they told me it was an option. Much better than a vein! Thanks for the tip.take care everyone
Latte
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Binney, nice to see you here : ).
I clicked on your links and found a Lymphoedema forum and WOW so much info!!! just like here at BC.O. What a wonderful resource the internet can be!
Latte Thats great you have found the FPs better. Apparently theyre not everyones cup of T though I cant think why if youve got munted veins through Chemo.
Musical
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