TRIPLE POSITIVE GROUP

coachvicky

Oh Kattie ... I am so very sorry. I did not see anything negative in your post. I just had the experience I had with all this pink stuff.

Again, I apologize.

Vicky

Kattis894

No, you did not offend me at all, just happy I was able to contribute financially in a large way to women undergoing chemo since Cherry thought very few Swedish people did that, I wish I could just have a cure for all of us but no such luck yet...the pink ribbons and other products can be annoying, reminding one of all this but thinking it is still a good way to remind people to check themselves, not skip the mammograms etc especially those not yet effected. I think most people connect cancer with death, maybe that is why the color pink was chosen, the fact treatment has improved so much is not as known but still to have picked the color black would have scared people even more...:) Hope is important for all of us going threw this.

coachvicky

Kattis, I understand better.

Funny thing is before BC I always wore pink. I even had a pair of pink jeans and shoes (until my dog Baxter got the shoes).

Now, It is a hard color to put on, I always found pink uplifting.

Vicky

T-Sue

Thank you for sharing your perspectives on Pinktober everyone. Vicky, I love your stories of support. I agree that many of our friends and family see the ribbons as a way to show support other than bringing over a casserole. It also true that the people who don't step up are disappointing. I try to think that perhaps they just couldn't face the trama of my situation or they we're just not true friends anyway.

Cherry-sw

Kattis, the last thing I wanted was to sound as this ungrateful foreigner who is spreading false rumours about the country where she lives, and yet I did. I am not a native Swede. I am sure I am completely wrong about Swedes contributing because people do not speak about it at all, I confirm that bragging is absolutely the last quality Swedish people possess,it is considered to be such a bad taste, so may be no one ever has mentioned any contributions to me. I have not done any systematical donatio for bc myself

Cherry

Cherry-sw

coachvicky, you have amazing friends, the one who red the book, this is a true ona for sure. I chose no to tell everybody but I told has disappointed me except for my manager, he had surprised me and I do not know why I am surprised, he was always like this, this is just this feeling I have that I am not worth much at this point.

Cherry

Kattis894

You are worth everything Cherry...and you will make it threw..your hair will grow back even thicker than before and your skin will look more radiant..my favourite phrase from my onc is still "you will hopefully just see this year in a (year) few years from now"

Hugs

Cherry-sw

Kattis, I spent several hours yesterday reading Swedish national care program for bc, the latest one from 2014, 303 pages to be exactly. Weekly Taxol is mentioned as a complementary treatment and the best regimen in terms of survival for aggressive bc is considered to be dose dense anthracycline plus taxane. Not even docetaxel is that effective. Four dose dense docetaxel three weeks apart is equal to weekly paklitaxel in terms of survival, Chapter 13. The following chapter is about targeted terapies for Her2 positive and it says once again that anthracycline + taxane is the best regimen that has less recurrence rate. Nothing about weekly Taxol as a standard of care. Cherry

Cherry-sw

Tresjolie, you will get through it, just remember you two did nothing wrong, you just went through a lot that can break anybody. Coming from someone who is considering either divource or conselling every other day, and there is no sex issue because this is completely gone, I am considered sick, who wants to have any psysical contact with a sick person, my looks do not help either, neither me being sad and grumpy

Dannajae

I don't think I've posted since my birthday on 9/20, only significant because it was the same day the Contura mammosite was inserted. My surgeon had used the term Savy so I researched everything on the Savy, but when I got to his office, I found out it was the Contura. He used Savy like someone would use Kleenex for all tissues. Totally threw me off. The next weird thing was how many people in the room: the surgeon, nurse, and two representatives from the mammosite company! At least one was actually a clinician, though, but it was still strange. The clinician talked my surgeon through the procedure, and I love my surgeon but this was uncomfortable. He typically used Savy but thought the new Contura would be better. I can tell you that I would think long and hard about doing brachytherapy again (god forbid). It was incredibly painful because the ultrasound showed a nice pocket where my tumor had been but there was a lot of unexpected tissue instead of fluid and it took quite a while to place it. I cried the whole time and squeezed the nurse's poor hand. I haven't been crying a lot, but I felt like my tears during this procedure were for more than just the pain. They were all about "why me?" as well. I was glad my treatment was 5 days instead of 4-6 weeks, but it was invasive, uncomfortable, and I don't know if I'd make the same choice.

Two days ago I had the power port placed, and today it is red, burning and itchy. I'm so afraid of infection because I had Cellulitis after my lumpectomy. I've been on a regimen of antibiotics for the past week, though. Could I still get an infection? So unhappy. Sorry I don't comment much, I work a lot, but I appreciate reading your stories.

Dannajae

Thanks, HapB! To be on the safe side, I'm going in to the dr tomorrow morning just so they can look at it. It's below the port, so it might be an allergic reaction to something they used

BJI

Danna- Sorry to hear about your Contura experience. Mine was just the opposite. During my lumpectomy, surgeon placed a balloon catheter filled with saline. A week later I went in and they slid the balloon catheter out and slid the contura in. Only local anesthetic, very little discomfort. Started my 5 day radiation the next week. Never had any discomfort, the last day they removed it, with a deep breath and exhale it was gone, only felt a little pressure. My whole experience was positive. My surgeon was great and had placed contura many times. Would highly recommend it.

Cherry-sw

BJI, I saw you did weekly Taxol, was your tumor larger than 1cm

Dannajae

BJI -- I think the problem was that they didn't put it in for two months after my lumpectomy. I had Cellulitis and then genetics testing. Everything dragged out

Kattis894

Cherry, but the report is from 2014..I think they know more each year that pass..it seems science is moving pretty fast...I am confident in my medical team so not questioning my treatment at this point, though I think the monitoring and aftercare could be a bit better...reading up a bit on the latest neratinib and today noticed another study on this site :

http://www.breastcancer.org/research-news/verzenio...

so things are happening fast...good things...we have a lot of options...I do admire your dedication to learn about your situation and interesting to read your posts.

Cherry-sw

Kattis, it is our Nationellt vårdprogram bröstcancer, it has no more recent edition and it contains all recommendations and what those are based on. I will talk to my oncologist on Tuesday, I need to get some answers, I have some trust issues, even though they are the only people who can help me they cannot understand what I am going through and I feel that all of them are getting annoyed when I ask a lot of questions

BJI

Cherry-sw - my tumor was 1.6, finished up Taxol August 16th, doing Herceptin every 3 weeks til May.

Danna - Yes, I could see that as being a problem. Everything moved pretty fast for me, biopsy April 6, lumpectomy April 29, radiation May 8-12, port placed May 30, Taxol/Herceptin started May 31. Had no issues with surgery or radiation. Minor SE from chemo, actually think herceptin only is more fatigue, and I did start Arimidex September 14th. Have had 2 echos, both normal, have my first mammo in November (6 month). I opted to not ring the bell in August after chemo, waiting til May when done with Herceptin.

ElaineTherese

BJI,

I never rang the bell, after chemo or the last Herceptin. Some Stage IV patients aren't fond of the bell; it reminds them that they will never be finished with treatment.

Kattis894

I have noticed our healthcare system, much like in Canada, also being annoyed at a lot of questions...I just continue to ask. You can also use the 1177.com and log on and mail questions, ask for your journal etc (sorry this info is a bit specific for our region) and you can change your doctor within the same clinic without giving a "why". I have. I have also not followed their recommendations for direct reconstruction which I am still happy I did not etc. Stand your ground Cherry, I know it is hard but it is your right. Same time we are getting very good care and the latest in medicin including perjeta for those who need it but of course have our national guidelines so interesting to compare different treatments for different countries. If one is better than the other is a different questions.

PoseyGirl

that's an interesting question, Hapb.

I'm pretty happy with the set up here in Canada and feel fairly confident that we are receiving high standard of care. However, I do know that we are behind the States in terms of certain treatments being approved. Because we have that coverage, approving a drug becomes a huge financial burden for the taxpayers. So anything approved will have to show fairly substantial gains. That's why I believe it will be a frosty day in hell before I could get Nerlynx here (but maybe I will be wrong!). Canadians also feel that the wait times for things are too long.

I believe in universal healthcare. It is upsetting to think that people are not getting medical attention because they can't afford it.

I'm not very insightful on this topic, I know . But I'd really like to hear what others say

Kattis894

I am beyond happy with the system here in Scandinavia, even though it has some flaws, private insurance is not something we need to think about. Everyone is insured regardless or work situations etc and receive the care they need. We have had some political problems in the past years creating some waiting lists for operations, underpaid nurses etc but there is ways to still work around that. Some people state "you have to be well to be sick" and somewhere that might be some truth in that, saying all this we all receive state of the art medical service and the latest approved medications. Disability as well during time away from work. Taxes might seem high living over here but I think we get a lot for it and I am one that prefers paying taxes to equal out the system some. We still have rich and poor areas but that should not, in my opinion, be noticeable in healthcare, school systems, elderly care etc. As a society we need to take care of each other regardless from financial background, those that make more can pay more, period, well that is my opinion. I was lucky to have excellent health insurance and disability insurance while living in the US and that cost me a lot too meanwhile some people around me did not. I would have received the best care in the US but That is simply not fair when some do not. A lot of politicians here want to make the system similar to the US and that boggles my mind. I am both an American citizen and Swedish so know both systems quite well. The US has been struggling changing the healthcare system for such a long time so I am always wondering why some think we should go the private route even over here, knowing it does not work for everybody. I am sick and tired of us humans just watching out for ourselves, just wanting more and more, instead of being satisfied we all collectively have our basic needs taken care off. Well that was my political speech....:) and I am not a politician...:) In some countries there is for instance no herceptin available at all and people just...well pass away...so I think about that and how well we live in our rich countries most likely on the costs of others. I hate it.

coachvicky

KB870.

You can get Arimidex directly from the manufacturer for a USD $1.00 a day. I don't know if that is what you will take but wanted to share this info in case it is.

Vicky

Cherry-sw

Hi, I will second every word of Kattis', Scandinavian model of health care is a true implementation of socialistic approach, the real deal when it comes to the core values of socialism. It should notbe compared or mixed with those of countries that like Soviet claimed they built socialistic societets, they did not, they were in the best scenario totalitarian, and then we always have some African or Asian atrocious examples. The most important is the mentality here, it is seeing everybody as equials and desire to help those less fortunate. A socium that realizes that it will be so better off if each and one is taken care of even when they do not have means.

Frankly speaking I do not understand how it is possible that some people in US, a lot of them, do not have health insurance, what happens to them when they get sick? What happens to their children? Dental care is expensive in Sweden, and it is not subsidized in the same way as a conventional health care but still it is and for the children it is free, until the age of 18. For the health care we pay 150 EUR for a year from the date of first visit. So I was diagnosed in the end of June, paid until the total amount up to 150 EUR (even less) and will not pay anything until the end of June next year. Valid for everybody, if you do not speak the language, an interpreter will be provided free of charge. Prescription filled medications are not included but for those there is its own discount system, I do not remember the exact maximum amount but when you reach it you get everything for free for the rest of the year. We also have progressive tax system. Last government lost to the current one because they wanted to make some cuts on health care and general unemployment and sick insurance. When media started to publish interviews with cancer patients who complained about their sick insurance being cut and they were forcera to go back to work, I told my husband that they will not be elected for yet another period.

Of course, there are some flaws, stressed hospital personnel, longer waiting times, a standard of care that is not questionable, feeling that we are getting less. Like blood tests for tumor markers for example, they do not do it here, but when I red the national guidelines where was an explanation that those were unreliable. It could always be better but it is so much better than in Russia where they claim that they have free health care but it is never free, even if you want free stuff the hospital has a reservation for the shortage of supplies and it is a rule to show your 'gratitude' to all members of medical team after the treatment, the amounts are 'agreed upon' in advance. The reason behind it the low governmental wages as they claim but the system is corrupted that I believe if Russian doctors would start get paid as their Swedish colleagues the direct contributions from the patients will not stop. This is why the profession is still very desirable and the doctors are so better off financially whilepaying symbolic taxes. I am so glad I am out of there and live where I live

I would probably say that health insurance and weapon legislation are two reasons why I wouldn't move to US if I were considering to move elsewhere. But I always thought that I might end up in Canada or NZ. Not like anyone wants me there either, just making an example

Cherry

Cherry-sw

HapB, 80% of Swedish doctors are employed by various states, called Landsting, probably could be compared to your states but with the same legislation I think. Here is the link: https://en.m.wikipedia.org/wiki/County_councils_of_Sweden

20% belong to research and private practices. It is always desirable though to have experience from larger hospitals that belong to Landstng that are run by elected authorities of respective counties, so they are not run by the government that represents the majority of the parlament but theycomply to the legislation the parlament stipulates.

coachvicky

Cherry,

I bet you make a great neighbor in the USA.

Vicky

Cherry-sw

coachvicky, I apologize if I sounded offensive, but gun laws, health insurance and fast food are the only disadvantages I can name, otherwise love the country, history, literature, once again the variety of cuisine or different cuisines. I was the only one back in university who red The Last Mohican including the teacher who was a native American and thought that Uncan and Cora died like they did in the movie, but it was the opposite I told her, in the book, they lived. I did not tell her in front of the class but when she wanted discuss our presentation and looked at me and said but they died and I said no, he chose then to mention it infront of the class. To her defence, we were actually discussing another book by the Canadian author called Green Grass Running Water but it was all about intertextuality because the story refered to both Moby Dick and Falcon Eye. Yepp, I am a book worm, red all Jack London, all Theodore Draiser, all Phenimore Cooper.

Coachvicky, if I were your neghbor I would had never had a gun in my home but meatballs for sure and I know how to make a lox

Cherry

Kattis894

Crap, I just got a call back from hospital...another check...I guess I should be happy they are checking but why every 3 months? I thought I would be fine for longer...still having a bit of a lingering headache but giving work the blame for that...I hope they find absolutely nothing and do not want to investigate anything further...I can not shake the worry in any form or way...I need to have more medication against anxiety that is for sure...I hate, really hate this. Leave me alone cancer please. I can´t take it!

DizzyGirl

I just wanted to pop on and thank everyone on their info and input regarding surveillance and tumor markers. I haven't decided what I am going to do at this point. I won't finish Herceptin until February so I have some time. One of my BC friends sees another MO here in town and I will see what he does for surveillance.

DizzyGirl

Cherry-sw

Kattis, I understand you completely, I want the aftercare to be better but in terms of optionslike better and more secure diagnostics but on the other hand who wants them to find anything?

You can ask for conselling at your rehab, they can also involve a psychiatrist, the have several mild drugs to offer, they can also rum some tests. I got my anti-depressive when I hit the bottom, I am tired and gaining weight but I am not feeling this enormous anxiety anymore. Kramar,

Cherry

Cherry-sw

HapB, missed your question about the tuition fee. The efucation is Sweden is tuition-free for the residents, you even receive a scolarship, not much money, around 300 EUR I belive and you can take a loan from the government, a special institution, during your studies that will pay for the living like rent, food and other expenses, this is optional but a lot of students take it because the interest is very low and you have to pay back very little if you do not work.

Cherry