Topic: Pros and Cons of Tamoxifen

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Jan 10, 2018 08:09AM jaymeb wrote:

Ladies

I mentioned this on the stage 2 sisters forum. Have any of you heard that any woman with stage1-3 breast cancer has a 30% chance of distant reoccurance, just not sure the timeline? I don't get it, as the survival rate for stage 1 is almost 100%, Stage 2 93%, and Stage 3 73%. These stats are probably even a little higher due to such advancements with breast cancer. It's so strange, I see women with stage 1, no lymph nodes, do recommended treatments, and still have a reoccurance. Then I see Stage 3 with many lymph nodes positive, all treatments done, and no reoccurrence. It just does not make sense. What a crapshoot this is. It sucks. Then again, some websites are more credible than others.🙄

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Jan 10, 2018 11:45AM pupmom wrote:

jaymed, yes I did have radiation, 33 treatments I believe. Radiation is standard of care when one has a lumpectomy. I found it very easy. Toward the end my breast skin did get itchy and red, but never extremely bad.

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Jan 11, 2018 02:23PM Lisey wrote:

Jaymeb, you are misreading the stats. When you quote: the survival rate for stage 1 is almost 100%, Stage 2 93%, and Stage 3 73% - That is for the first 5 years, not the life of the patient. Even stage 1 ladies find their stats drop as time goes on. Here is a graph to help show recurrance at 5 years ONLY, but you can see the direction of the stats.. and they keep going. Luminal B, especially is at a steeper curve for dropping. Don't confuse the 5 year stats with lifetime stats. Yes, 30% of us will recur within our lifetimes.. frankly that doesn't bother me so long as I can postpone the recurrance until immunotherapy has it all controlled, like diabetes.

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Jan 13, 2018 10:46AM jaymeb wrote:

Faithonfire

Glad to hear your surgery was a success. As you know, it will take time to heal. Isn't it fun to get all those ballons, and cards? Shows you how many people care. How's it going with the drain tubes? Since, I just had one breast removed, I had two drains. I can't imagine 4. You'll get used to it, and those things will be out before you know it. Are you doing them yourself? Mom helped, but my daughter, and her friend liked draining those tubes, like it was some kind of science project!!!🙄🙄. Twice a day. Are yours drained two, or more a day? Not going to mention your family, you know you can always vent, and we'll be there for you. Concentrate on getting better, and let your loved ones help. Are you sleeping ok? What pain medicine did the docs prescribe? Ckeck in with us when you're up to it. Prayers for you🙏🙏🙏🙏

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Jan 13, 2018 10:56AM jaymeb wrote:

Faithonfire

Are you having reconstruction? Do you have expanders in?

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Jan 13, 2018 03:15PM Faithonfire wrote:

morning everyone!

I am a little loopy from all the pain meds still but finally got everything under control yesterday I got in to palliative care office and increased the extended release morphine and still have breakthrough fast acting doses for spikes too now adjusted for post surgery doses for now.

I stopped in to my plastic surgeons office next and had her fix my giant ace bandage and duct tape chest wrap that slid down my back a bit and was yanking on my 4 drain tubes stitched in place!!

It was the one thing I couldn't manage myself or reach because I'm wrapped up so well nobody but my dr is getting in there this wensday for a first look and 2 drains out.! I was glad we went with 4 because it released pressure evenly and wasnt as bad as I thought it would be with pain once we got me settled in my wrap. I don't even know where my scars are exactly but I have a pretty good guess they went straight across middle and I've had some wicked nightmares from it!

My nipple bank on c scars look great! They are attaching well and I feel my body connecting to them under the outer stitches going around wrapped tissue in soaked bundles about 4"tall so they will be checked soon but not this first time I don't know for sure yet. I'm one of the first ones done in my state so LOTS of excitement rushing around me and extra visits to take a quick peek it was funny!

I was told I have had optimal output on my 4 drains and one is still empty from surgery but tube is working fine and other one has dumped twice on that side and looks great so it was expected the side without most cancer in it to drain less. When output is under 25cc for 3 days or more they are ready to come out!

I do most of my own self care with everything because having ptsd and major body trauma is kind of a unique situation for me so I am best left alone in a quiet room as long as I check in texting several times a day.

The only person I would actually let help me with drains being that nasty is my husband and I haven't heard from him since he hung up on me in the hospital Tuesday!! What a guy right? I don't even remember the conversation but after everything I just went through, THAT is the only thing that still makes me cry! I did not hear a single word from any of our kids either the entire time so I am just praying for some divine intervention until I can help them! They seem to learn best by example so I just hope my husband is finally held accountable for his undeniable neglect of the needs of his family! There is just no excuse to promote preying upon the weak and I hope they get to see that happen before I return!

I managed to pick up 5 lbs already so that's a good start, and I just try to sleep as much as I can around my pill schedule so I can heal as fast as possible.

I was diagnosed at 105 lbs and picked up 27 at my top point on chemo. I worked hard for it trying to gain mass for reconstruction surgery but the stress just strips it away as fast as I can get it to stick! It's frustrating to endure but very impressive from a clinical standpoint that I'm so squishy for being so small I am told. I just hope it does more good for others one day as it did damage to me. Strangest part is they can't understand how I healed that way and what that means to the genetics work we are doing.

I feel like a little worm on a big hook these days and I can't wait to be filled in on the details that's got everyone so excited!

I'll save the doctor shaming on the pain meds and the hospital standard policy vs cancer center policy that uses that hospital across the street to put a smiling FACE on the patient that suffers as a result of adminitistrative policy FAILURE that causes ME pain as a direct result of things beyond my control! They wanted to send me home same day after 8 hr surgery!! HA! Teamsters hear that and they will hit the roof!! I have better insurance than most doctors working there thanks to the company that destroyed our marriage faster than it drained its own pension fund!

24 hr minimum is medical timeframe for patient after 6 hrs under in surgery vs insurance trying to treat and street this like a cosmetic procedure!!! I hate indignant soulless greed and take great pleasure in hanging a few policy raiding pirates in the wind for the rest to take notice of before they decide how to bend their ethics for the almighty paycheck!

My therapist phd is teaming up with all my cancer advocate nurses and charity groups and old family friends with a reputation for immediate policy changes on local AND state levels to review how my case was handeled from start to finish NOW, so even though I wont be there they will never put another patient through what I had to endure!

I can rest up with a smile knowing my part of the battle is over and all those fighting for my rights have the best case possible because of how I chose to walk through it. I know I did my best and changed a lot of lives while I had the chance because nobody deserves to be abandoned for being sick!

I just can't wait to be well enough to show what happens when patients change the healthcare industry built to SERVE us. I am not ashamed to tell them all how that made me feel, so they can FIX it for the next patient that might not be able to

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Jan 14, 2018 03:47PM Lisey wrote:

Faith, I notice your post was directed at me with a 'There are several options that I didnt' qualify for that might interest you now"...


I would NEVER risk my healthy back or stomach or butt muscle / tissue for something superficial. Especially with the odds of failure that they accompany, and the additional scars to my body. For what? Lumps I can't feel and serve no purpose other than to give the impression of breasts when people look at me? Nah, I am as God made me, thanks. Just me, flat, healthy, and no additional scars on healthy parts of my body. (I aint sacrificing my ass or back.. no way!) Here I am... To me, Flat is accepting myself as perfect and Good just as God intended. And Honestly, I think I look great flat.

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Jan 15, 2018 12:30AM Faithonfire wrote:

liszy,

I am sorry if my comment offended you in any way I ment no disrespect to your decision and was only thinking that the options you were offered for reconstruction might not have met your expectations or level of acceptable risk to your future health.

I did not know you felt so strongly about being natural in a different context than I understood it in the conversation about reconstruction and why I chose the option I did was to preserve as much of my original form and tissue as possible.

I don't expect you to be able to understand why I could never survive living flat against my will after all I have survived.

It is a choice as fundamental to me as when to stop treatments and enjoy whatever time is left in peace instead of pain. It is never a choice I could imagine making for anyone else, but I believe every patient deserves to decide the fate of her own body with the most accurate information and respect.

I don't care if another soul EVER sees or touches them again, it is a fundimental part of my identity that I would rather die attached to than be discarded and denied their value for whatever additional time that buys me.

I have spent the last 17 years transforming my body in the most unbelievable ways just to have my children and it was an honor I was willing to give my life for EVERY time!

I was misdiagnosed enough to almost make me give up seeking a diagnosis entirely because the implication of my moral failings of any kind was more profitable than admitting ignorance passed off as industry standard treatment policy at the time!

To see the faces of the lives that level of ignorance almost killed changes the conversations doctors are having with women my age STILL doing all the tests possible to protect myself and still facing statements like these presented as indisputable facts until the true research exposes lies like these!

Breast calcifications won't turn in to invasive ductal carcinoma I was told as each biopsy came back benign, and the braca 2 genetic test was not considered medically relevant enough to cover by my mothers insurance 3 years ago EITHER!

I decided to change corrupt policy standards instead and march anyone preventing advancements in industry standard treatments back for profit accountable in a much more public manner to promote transparency for patients and policy makers alike.

When we know better we can DO better, and it takes more courage than you can imagine to stand up and say I was taken advantage of because of my diagnosis and it is no shame of mine to demand my rights be honored with dignity while I am seeking treatment from start to finish.

I am only trying to share as much of that strength as I can with anyone who is facing similar challenges and I would never pass judgement on someone for having different medical goals or priorities than I do.

IM sorry if you mistook my enduring strength as aggression or unkind to you in any way that is the last thing I wanted to make anyone here feel.

It's not as easy to live through without anyone supporting your emotional reactions to the physical fallout this diagnosis is so notorious for.

Since I didn't have any choice about loosing my hair or dying if I refused, I will fight to my last breath to save as many pieces of myself left as possible!I demand actual scientific answers for the parts I was already forced to sacrifice without any explanation at all except because THEY don't know or care as long as the profits roll in without convictions for every life lost to such industry ignorance preventing new drugs from ever getting approved let alone actually CURE us.

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Jan 15, 2018 07:08AM jaymeb wrote:

Lisey

Is that you in the picture with the blue dress? I assuming so. You look great!!!! Who is the young man? You are comfortable in your own skin, and I respect you for it. As I said earlier, I can't wait to get this damn expander out in a month. I pray I have the results I desire, but like you, I hate pain. If the implant causes discomfort, and affects my quality of life, hell yeah, I would have it taken out!!!!!

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Jan 15, 2018 09:53AM Faithonfire wrote:

hi jaymeb,

By all means it can't go far enough in my opinion! if you ever see or hear of this level of disrespect done to a spouse... socially shame the CRAP out of them at every opportunity! What relationship could possibly succeed that level of vile beginning as preying upon a diagnosis for gain or pure spite! It's been 5 days in a row since he hung up on me and not a single response since a conversation I can't remember making me cry so much my nurses all sent him bad vibes together so I hope his luck in taking advantage of the fact I love him finally ran out!

I am not afraid to confront the situation head on using as many resources as are needed to get them ALL the therapy care they have OBVIOUSLY not been getting as court ordered during my chemo and straighten out my husbands current priorities since the last time he committed perjury in court and my rights were upheld that could significantly rearrange our entire living environments until significant progress is achieved with our marriage and documented at school for my daughters skipping days at a time since one got her drivers lisence a few months ago during my chemo.

I see a therapist weekly so we are working on the best strategy to expose the entire situation to their therapy process with documented facts that could have some serious impact on their reputations or futures for refusing private help and how it all spun out of control so quickly the sicker I became

until we found the breast cancer in my armpit under the prominent muscle. It wasn't like a normal tumor which is why it requires extensive structure studies in oncology and genetic departments with regards to my stats during my entire treatment and expedited diagnostics. My specific mutation and exposure allergy history has shown amazing potential to adapt during the actual treatments to the side effects. I grew hair back after I lost it taking the same drug and I can't wait to hear why and how one day!

I'm afraid my husband has lost his grip on reality if he thinks I will endure being abandoned and ignored in silence. It's a sad socially brutal thug mentality of a sick juvenile that has swept over my family like a plague. The rumors were enough to cause my husband to believe I was unfaithful which is as unthinkable as abandoning my family as they denied I was even dying of cancer at that time!

It forces me to act by asking for the help he denies and tells me nothing about our kids or our marriage at all!

Now I disrupt the unhealthy status quo by being the bad person to dare return cancer free to demand proper care and supervision that no longer absolves anything they EVER do instead of own their behavior and face the concequences are real just like my cancer was. I love them enough to do this and trust me tough love sucks!

I have seen too many entire families wiped out by turning on a sick member for profit that it is not as much a regional problem as a larger social problem of men using a disposable attitude to women that love them enough to marry and have children with as long as HIS selfish needs are met FIRST at all times!

We have officially crossed the limit of Hunan decency with the silent act applied up to 9 days straight to have to call in ALL debts he could never afford before he refused to respond at all now after blaming me being sick for making him react that way!

It's sad but true some guys need this fact explained to them that treating women unfairly is the hallmark of a person to avoid being social within any setting like a leper or racist with visual disapproval of their revolting ideology until sincere and lasting change is demonstrated consistently.

He was not that brainwashed when I married him I swear, and I hate myself for still loving him but I will not allow that fact to cloud my judgement in how best to get them the help they need to heal in time.

Wish me luck and patience as I am still sicker than I have ever been in my life a week out of reconstruction therapy and struggling to keep myself together because even now I can still smile and say I have lived through worse and have the documented physical stats to prove it!

It's not my physical beauty that turns so many heads these days and that's what makes it important enough to share what we learn in reports about how I am healing this time.

Thanks for keeping a smile on my face thinking about my husband being treated like a man who wont honor his own word SHOULD be in public! What I want most is the revelation to sink in to him that the worse he treats me the greater he shames only himself.

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Jan 15, 2018 02:36PM pupmom wrote:

I had reconstruction after a lumpectomy, and it worked great! Best wishes to all, whatever their decisions about reconstruction are.

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Jan 19, 2018 06:24AM jaymeb wrote:

Faithonfire

Been thinking of you, how are you doing? Do you feel better each day? I know physically you'll be fine. Not sure mentally, with your husband and kids. Are you staying at your mother's? Do you still have your drain tubes? I know you are going through tremendous stress, but look out for you. Have you heard anything at all from your husband, or children?

I ran into an a friend the other day who is divorced. I met her 11 years ago at the pool where we would take our daughters swimming when they were little. We were stay at home moms. One day we were talking, and found out her husband was my dentist. Small world. Well several years went by, ran into her, and she told me her husband just packed his crap, and left her for another woman 15 years younger. Asshole, and he is still my dentist.

Now back to the other day, it had been three years since I had seen her, and we got into a deep discussion for over an hour. I was horrified with her story. The ex is from Russia and got to America with a scholarship for ice hockey. Not sure how they met, but she taught him English, and helped him through dental school. They were married 22 years with beautiful twin daughters, and another beautiful daughter. Well, the daughters got mad at her accusing their mother for kicking their dad out!!! Apparently, he made their mother look bad, so the girls took his side!!!!! She told me he didn't want to pay alimony, got lawyers involved, and he only has to pay for three years. That's bullshit!!! She also told me he never payed child support on time, and he cancelled her insurance before she had major knee surgery!!!!! He's a millionaire, with a 500,000.00 house, and a 80,000.00 car. She was in tears telling me all this. I was disgusted. He doesn't want to give her anything, and had plenty of money!!!! She also helped him build his clients, which contributed to his wealth. He has no problem spending on the girlfriend. On top of that, right after he left her, he started bringing the girlfriend to their church!!!! Robin had to find another to go to. He hangs up on her if she calls to talk about the daughters, which the twins are 18 now, the other is 13. She has tried to go to his house to just talk, and reach an understanding. He won't let her in, and threatens to call the police. She is about broke, and he has it all!!!! She said her daughters want to be with him more due to all the material possessions. Unbelievable!!!! She keeps beating herself up wondering what she did wrong!!!! I told her absolutely nothing just being a good wife, and mother. She cannot get over him. Just kept crying, I felt so helpless, what could I have said? I just listened. I told her I don't want him as my dentist anymore, but she told me I don't have too. He is a good dentist, but I cannot be comfortable, and I might cause a scene. I know there are always two sides, however I know she was telling the truth. What I cannot get my head around is how can a man be such a devil to the mother of his children, and have a conscience??? Very, very selfish. I just don't have that problem with my ex, and I left the marriage. He has always been there for me, and never let me down. Sure, he can be an ass, but he puts our daughter first, and he was right by my side through my journey with breast cancer. Always pays on time for child support, and he will give more. It so astounds me how men can be so horrible to wives who were selfless, and loved, and was committed to every step of the way. Well, karma is a bitch, and will bite you in the ass!!!

Faith, sorry for the long text, I just needed to get that out. I was making a point of how horrible, spineless, selfish, and cowards men can be. I'm not sure what your future holds, but know you're not alone. It is ok to think of only you.👍👍❤️❤️

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Jan 19, 2018 10:44AM jaymeb wrote:

pupmom

I was looking at your info, and noticed you had two lymph nodes positive. I had one positive node. Were you able to skip chemo? Did you have the onco dx test? I know you had radiation, I did also. Like you, I did fine. One more question, are you taking hormone therapy? Sorry I'm asking so many questions.

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Jan 19, 2018 06:08PM Faithonfire wrote:

hi jaymeb, pupmom and all

I've been laying low since I got out of surgery last wed. I was doing great and very hopeful right after surgery until my husband hung up on me in the hospital for a conversation I can't remember and hasn't responded since! That was his pathetic attempt to be there for me while I was in the hospital!!

Things haven't been the same in our family since about a month before my official diagnosis when I was told he was cheating on me, I was accused of cheating on him (kids love boyfriends idea to push divorce and improve their own lives at 13,14,and 17) and he started staying at his junkie friends empty house 5 out of 7 days a week leaving us with no money and communication being so vile he encouraged kids to bully bond with friend and him by hurting me to cause a mental breakdown using my ptsd symptoms to hide true fact that I was really dying of cancer and not lazy or crazy for insisting on proper care! I refused to live a lie under chemical restraints to exploit either! I had been cyberstalked for years and just found out after I left the true extent of it too, and I can't handle dealing with that if we don't stay married.

They all have this idiotic notion that if they all tell the same lie then my truth will be ignored because who would take my word over theirs? The tape recorder of their own words for the right audience HA!! The documented facts speak for themselves I am afraid and I will no longer be shamed to keep silent and allow this to continue! I am sick of him thinking there is nothing I can do to stop him from behaving this way so I am starting to reach out to my kids schools and fill them in on the truth because my children NOW hate my guts and curse at me any time I try to speak to them because I ABANDONED them all!! Funny how loyal they used to be when we all weren't sure if daddy was ever coming home so I would go to charity food banks to keep them fed but I am a horrible selfish mother that deserves their hatred for not living up to unrealistic expectations!

Monkey see monkey do so the more women that fall victim to this cheap male solution of replacing relationships instead of honoring themselves or their spouses without stigma need to be called out as social scum they are and warn others about past relationships before it's too late to escape the same fate!

I was using the same team of docs that CURED my moms breast cancer 3 years ago but because I stayed with her and didn't stop chemo to come home to put their needs first like I always have means I deserve to die with them cursing my name now. It makes NO sense to any sane person who has heard it save my therapist who thinks it's drugs and I know it must be stopped before things get any worse for them! I can't help worrying and feeling so helpless being this far away and still unable to travel that I am starting to ask for help getting things under control before I visit or call my lawyer back and really put my foot down if he has become nothing more than a junkie thug to his WIFE of 17 years! I'm not disposable and very tenacious so I will let him hang with his own words if he tries to divorce me for being sick! Then we talk audits over not a penny paid since I started treatments! He will pay in time what he lacks in cash or favors like my unfulfilled promises that turned out to be lies the day I was too sick to make him want to try anymore! What a waste of a man to live thinking that way!!

I just started feeling better after getting one set of drains yanked the other day so only 2 drains left in, one on each side and I am sure I will be fine physically as soon as the tubes stitched in my damn sides will stop getting pinched tugged or yanked by EVERYTHING it just never stops driving me nuts!! That bothers me more than the scars straight across instead of underneath breasts but skin was stronger there and it's better for healing overall with my nipple grafts. Still a bit worried about them being viable so I get checked again this week along with more volume in expanders to fill me back up after I put some more weight on since being in hospital. I just can't seem to keep any on when i am so stressed which has been every time my husband knows I am weakest but it's documented now at least.

I am staying focused on my own health and healing until I hear some good news on the home front for once as I am sure their lie about what happened to me will embarrass THEM much more than me as soon as anyone gets a look at the new me in light of the facts!!

That day is getting closer and I am proud to stand up to this nature of mental torture and put a face on a domestic issue that destroys so many lives!

Turning on a family member for recieving a diagnosis that has such stigma that it justifies treating the inconveniently sick as less than human is more common in east coast because of society's attitude of women being disposable and less than human the moment they stop silently serving and protests not receiving critically needed care!

I swear it defies sanity that anyone would encourage treating a spouse this way in my condition and will get away with it as a minor or adult! I only have to stay smiling and know things will all work out with a little divine intervention!!

I took the hardest step yesterday and called and spoke to school office so I am still waiting to hear back about what to do next. My therapist reccomends drug tests to start and I agree!! I think that one of them getting arrested for it might be the only way to save them from a much worse fate at this point, who knows but pray for us!

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Jan 19, 2018 10:01PM Faithonfire wrote:

hi Barkley,

thanks for the encouragement and advice. I am a big believer in the power of prayer and have experienced it myself in a more traditional Christian manner but I have spent most of my life studying religions of all kinds just to see the similarities these messages of hope and faith provide in so many unique ways.

Best of luck to all those seeking peace any way it reaches you!

It's good to hear some do beat the odds of living in a disposable social society that leads our core values astray by desensitizing ourselves to such revolting injustices instead of rejecting them emphatically on every level