Topic: Pros and Cons of Tamoxifen

Forum: "Middle Age" 40-60(ish) Years Old With Breast Cancer — Meet others in this age-range who share similar life issues.

Posted on: Dec 28, 2017 07:51AM

Posted on: Dec 28, 2017 07:51AM

llwilson wrote:

I have read and read and read and would love to get someone's opinion on not taking to TAmoxifen. I'm 56, ER+, but my OncaType is 9 and I have just finished my radiation and feel great! I was low risk to begin with and the cancer was very contained. The side effects of Tamoxifen are absolutely terrifying for me. After finally surviving, being happy again, why would I torture my body to lower the risk of reoccurrence. I read someone say they'd rather lose their breasts than their hair. I feel like I finally have my life again, I can start getting the weight off and hiking again. All the possible side effects sounds like it will make life much worse. Looking for someone that is similar age group.

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Jan 5, 2018 10:30AM Faithonfire wrote:

Thanks pup mom and jaymeb

I am doing my best to stay strong and get through surgery and reconstruction on the 9th as I stay with my mom and big brother during my treatments as I use the same team of doctors that cured my mom of identical breast cancer 3 years ago.

I was diagnosed in June 2017, and my husband of 18 years did not believe it at first and believed our 3 teenagers ages 13, son 14 daughter and daughter 17 that I was cheating on him when the reality was I had many doctors appointments before I got the diagnosis of stage 3 invasive ductal carcinoma, because I am a braca 2 just like my mom.

The behavior shift was so dramatic for my family and happened before my diagnosis because I was literally dying and called a lazy crazy liar doing this all to get attention

I had a part time union job and 3 teenage schedules to keep on top of house chores and my husband staying at his recently abandoned friends house as many days in a row as possible during the week claiming to save us money as he avoided all domestic problems and blamed me for all failures because I was there and loved him enough to support him trying to help his pal learn to cope as I wasted away to 105 lbs at 5'7"! We opened our lives to help my husbands friend get over a bad breakup and he wound up convincing my family to ignore me and hate me for being sick so he could have his new playmates all to himself! Found out a little too late that his girlfriend had a permanent restraining order against him, and he is a virtual stalker! I did everything I could to be kind and supportive to this man out of respect for my husband and to be a good Christian as I always have been. I never have or would cheat on my husband so to be accused of that by people I love who only wanted to eliminate me from my own family was devastating!

So with no family support at home and teenagers that turned on me to try and end our marriage with rumors of infidelity, a severe diagnosis that required a LOT of heavy medications and me unable to stay vigilant enough to prevent theft,or trust with my care... I had no choice but to go stay with my mom and start treatments immediately because my cancer was so aggressive.

I hardly had time to grasp what was happening to me, and my whole world imploded while I watched helplessly as my worst nightmares came true! I could not wait for their social approval first or find a reliable team in my state to treat my cancer without their devotion to me surviving this and I was told I didn't even deserve a hug before I left!

I had ptsd for over a decade before this so I have put my family through a lot trying to deal with all that in cognitive behavioral therapy because it's the only medication free treatment option and it kept me safe in the worst situations so many times I was lucky to learn it before my diagnosis or I would never have made it through chemo even with an addiction specialist phd therapist working with me now! He is shocked at my family's reaction too but said my kids are unable to face the risk my diagnosis places on their futures so it is easier to blame me for moral failings that justify their reaction. I think it's safer to say they are pissed they have no new medicine to get their hands on and impress their new friends with emotionally abusing their sick mom! My oldest daughter started online dating a boy who had divorced parents and the idea to split our marriage up for our own good was met with the perfect storm of circumstances that allowed it to go this far. I have not had any emotional support from my husband since our anniversary he didn't visit me on, not a single pic of our home or tree or kids this Christmas, no New Years call to say I love you and now he won't even respond for weeks at a time and when he does it's hostile because I abandoned THEM! I don't want to have to get a divorce and I still won't be able to travel after surgery so I am stuck in limbo for now and have to keep praying that God will set things right for my family. I can't hold out much longer like this but if his parasite of a friend finally got arrested for violating his restraining order and bragging how easy it is to stalk others before I come home we might actually have a chance to save our family! The man I married is still inside there somewhere and i love him enough to try to save our relationship and family from society's soulless modern attitude to simply replace me with a younger model to destroy! They will face the reality that a disabled mother HAS rights and violating them will land them in a cage no matter how sick I am! That's the last thing I want for any of them but to prey upon your own family member for being too sick to stop it is something I have never seen until digital lives became more important than real ones these days! I just don't get the goal of it all and I never thought I would have to tell anyone I was bullied by my own kids because they were raised better than that! My biggest mistake was trusting my husband to have my back and help them understand what I was going through instead of throwing me under the buss to be the popular absentee parent as the kids watch over each other now that I can't. It will all work out in the end because I am not simply going to disappear and they will face me sooner than they think! Wish me luck and I will let you know how it goes after surgery! I keep thinking I will wake up in the hospital to everyone around my bed telling me they love me and want me to come home but I know if I wasn't even worth talking to on New Years they could all care less if I live through it at all.


Dx 6/25/2017, IDC, Both breasts, Stage IIIC, ER+, HER2- Chemotherapy 7/13/2017 Abraxane (albumin-bound or nab-paclitaxel), Cytoxan (cyclophosphamide), Doxil (doxorubicin), Methotrexate (Amethopterin, Mexate, Folex), Taxol (paclitaxel), Taxotere (docetaxel) Chemotherapy 9/1/2017 AC + T (Taxol) Surgery 1/8/2018 Lymph node removal: Left, Underarm/Axillary; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery 1/8/2018 Lymph node removal: Left, Sentinel, Underarm/Axillary; Mastectomy: Left, Right; Prophylactic mastectomy: Left, Right; Reconstruction (left): Nipple reconstruction, Tissue expander placement; Reconstruction (right): Nipple reconstruction, Tissue expander placement
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Jan 5, 2018 02:33PM edwards750 wrote:

Good advice jaymeb. I too am appalled at the stories I have read like this. I agree what about the marriage vows or were those just scripted wordsfor the occasion?

One of my X neighbors went through something similar with her husband. They ended up divorcing. Def for the best.

I can’t conceive of anyone family member esp reacting this way. It’s unfathomable and frankly unforgivable. It’s like we asked for it. Yea right. We chose to be inflicted with BC.

I hope counseling helps. My husband didn’t hover over me but he has been supportive and loving. I know he’s scared too. I’ve always been the strong independent one. Now the ball is in his court at least for me to lean on for a change.

I am 6 years out last August so I’m feeling guardingly optimistic. I did take Tamoxifen and while it wasn’t a walk in the park it wasn’t that bad either. I no longer take it. My MO said no need for me to. Early stage, small tumor and low Oncotype score. I did have 33 Rads treatments.

So try and keep the faith. I know it’s hard but you aren’t alone. You have us. We know exactly how you feel. Been there done that.

BC doesn’t define you so you will make it through the process. We are testaments to that.

Diane

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Jan 5, 2018 03:06PM Lisey wrote:

I think I'm the one who said I'd rather lose my breasts than my hair.. and my hair is about 50% thinner than it was a year ago. Is Tamoxifen to blame? I think yes, it's a side effect, even though Komen's site says it's not. My onc said about 25% of women have hair thinning. That said, I have NO OTHER issues with Tamoxifen, so I'm in a struggle about it. I'm going to keep taking it and trying to find other ways to contain the hair loss. Tamoxifen was symptom free for me until about 15 months in... I figure I have about 40 months to go. I'm chugging along feeling totally normal on Tamoxifen - minus my now much thinner hair. :) I recommend trying Tamoxifen before deciding.

Oncotype =20, ER 95%, PR 5%, ki67= 30%, Mammoprint = Low, Blueprint = Luminal A!!!! TEs= Iron Bra of Death - not worth all the complications for foobs that I'll never feel. Flat and fealess now. Dx 5/11/2016, IDC, Right, 1cm, Stage IA, Grade 2, 0/6 nodes, ER+/PR+, HER2- Surgery 6/1/2016 Lymph node removal: Sentinel Surgery 6/14/2016 Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery 7/6/2016 Mastectomy: Left, Right Hormonal Therapy 7/14/2016 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Jan 5, 2018 03:30PM Wonderfulmom wrote:

I have been taking Tamoxifen for 6 years. I have done well with it. I have read that it prevents my body from turning any remaining Estrogen into cancer. Studies have shown a significant survival benefit to taking it for 10 years instead of 5, so with my doctor’s approval I am taking it for 10 years instead of 5

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Jan 6, 2018 07:06PM DownNotOut wrote:

Faithonfire,

My thoughts and prayers are with you! It's hard to believe what is going on within your family but hang on & you are wise to focus on yourself and your health right now. As much as possible set those expectations of "normal" family interactions aside (like a New Years I love you) & get what you need from those who will give it freely, like your mom, brother, and us.

May God bless you in 2018, whatever that looks like for you, dear lady

DownNotOut Dx 11/2017, DCIS/IDC, Right, 1cm, Stage IA, Grade 2, 0/4 nodes, ER+/PR+, HER2- Surgery 11/15/2017 Lumpectomy: Right; Lymph node removal: Sentinel Radiation Therapy 1/31/2018 Whole breast: Breast Hormonal Therapy 3/17/2018 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Jan 7, 2018 05:15PM Faithonfire wrote:

thanks so much everyone!

I just can't find the words to express my sorrow and my family here and friends have been great trying to keep me strong. It means a lot to me to know I'm not the only one to face such betrayal from my own husband and kids!

It's downright malicious at this point and my husband refusing to return my calls or deal with what our son said to me yesterday, has left me no choice but to ask for help he refused to provide from school instead!

I am more hurt than scared that my husband would use this as the excuse for divorce as soon as he found out I had to loose my breasts!! I know our children had a large part to play in splitting us up and that is the hardest thing to forgive them for one day.

I will you all know how it went after I get out but they might keep me a few days in the hospital after surgery. Mom will be there for me always, I honestly can't imagine my life without her!

I know our kids will come around with the right therapy, it's making them go I depended on my husband for while I was away during my treatments that I am at a total loss!m

I got too sick to make him want to try so that justifies everything they do to me. That was unthinkable advice 6 months ago to ANY of us!

I just hope I wake up to a new reality with my new body! The reaction was fueled by spite and took advantage of my devotion to this day! I won't let that change my nature or hope for a better future


Dx 6/25/2017, IDC, Both breasts, Stage IIIC, ER+, HER2- Chemotherapy 7/13/2017 Abraxane (albumin-bound or nab-paclitaxel), Cytoxan (cyclophosphamide), Doxil (doxorubicin), Methotrexate (Amethopterin, Mexate, Folex), Taxol (paclitaxel), Taxotere (docetaxel) Chemotherapy 9/1/2017 AC + T (Taxol) Surgery 1/8/2018 Lymph node removal: Left, Underarm/Axillary; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery 1/8/2018 Lymph node removal: Left, Sentinel, Underarm/Axillary; Mastectomy: Left, Right; Prophylactic mastectomy: Left, Right; Reconstruction (left): Nipple reconstruction, Tissue expander placement; Reconstruction (right): Nipple reconstruction, Tissue expander placement
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Jan 7, 2018 10:23PM jaymeb wrote:

Faithonfire

I've been thinking of you, and praying. I'm just so shocked, and can't wrap my head around this one. You said that your husband had a friend, and how you tried to help him. Did you ever have a bad vibe about him before you found out was a jackass he is? What was your husband thinking? Like you, I like to give people the benefit of the doubt. Unfortunately, they can very much take advantage, and screw you over. In general, and especially with cancer, we need positive, and loving people in our life. We absolutely do not need negativity!!!!!! I'm so glad you have your Mom. My mother has been staying with me for almost a year. We do go back and forth to her home two hours away often. I'm on medical leave. I know she misses her house, as she is 73, and misses her own environment. I'm divorced with a 14 year old daughter, and share joint custody with her dad. I do have her mostly, as he travels more for work. We were married for 15 years, and I became unhappy. I think some of it was I felt so dependent on him, and always had to ask for money like a child. We were fighting all the time. So, I left. There was bitterness in the beginning, but for our daughter's sake, we finally came to an agreement. She was nine, and very impactful on her. What has helped her cope is how well her dad and I get along. A couple of years after our divorce, I wanted him back. I still do. He has moved on, but he said he would always be there for me, and he has never let me down, and very much a man of his word. Yes, he can still piss me off, and be an ass. I think all men can. When I was suspected of having breast cancer, he went with me to my biopsy. After I was diagnosed, he was there when I had surgery, and sat with me at my bedside working on his computer for work. He went through this early journey with me, and did not have to. I would give anything to get him back. I know for a fact if this happened while we were married, he would have stuck by me, no matter how I looked. Paul, my ex cannot understand why men would leave, or be horrible to their wives through such a serious disease. God, how I wish I could go back, but have to move forward. You will get through this. Thank god for your mom. I do wish Paul and I would have gotten counseling. That might have saved us. I just hate what situation you are in. I do hope, if possible, you two can save your marriage. I wish I would have. But I know there are situations where a marriage is so broken, it can't be salvaged. Do you communicate with your husband at all? Well, the most important thing now, is your health. You need positivity, and love. It might seem like it, but you're not alone.
Dx 2/15/2017, IDC, Left, 1cm, Stage IIA, Grade 2, ER+/PR+, HER2-, Dx 2/15/2017, IDC, Left, 1cm, Stage IIA, Grade 2, 1/13 nodes, ER+/PR+, HER2-, Surgery 3/29/2017 Lymph node removal: Underarm/Axillary; Mastectomy: Left Hormonal Therapy 4/21/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy 7/16/2017 Whole breast: Breast, Lymph nodes, Chest wall
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Jan 7, 2018 11:12PM jaymeb wrote:

Faithonfire

I've been thinking of you, and praying. I'm just so shocked, and can't wrap my head around this one. You said that your husband had a friend, and how you tried to help him. Did you ever have a bad vibe about him before you found out was a jackass he is? What was your husband thinking? Like you, I like to give people the benefit of the doubt. Unfortunately, they can very much take advantage, and screw you over. In general, and especially with cancer, we need positive, and loving people in our life. We absolutely do not need negativity!!!!!! I'm so glad you have your Mom. My mother has been staying with me for almost a year. We do go back and forth to her home two hours away often. I'm on medical leave. I know she misses her house, as she is 73, and misses her own environment. I'm divorced with a 14 year old daughter, and share joint custody with her dad. I do have her mostly, as he travels more for work. We were married for 15 years, and I became unhappy. I think some of it was I felt so dependent on him, and always had to ask for money like a child. We were fighting all the time. So, I left. There was bitterness in the beginning, but for our daughter's sake, we finally came to an agreement. She was nine, and very impactful on her. What has helped her cope is how well her dad and I get along. A couple of years after our divorce, I wanted him back. I still do. He has moved on, but he said he would always be there for me, and he has never let me down, and very much a man of his word. Yes, he can still piss me off, and be an ass. I think all men can. When I was suspected of having breast cancer, he went with me to my biopsy. After I was diagnosed, he was there when I had surgery, and sat with me at my bedside working on his computer for work. He went through this early journey with me, and did not have to. I would give anything to get him back. I know for a fact if this happened while we were married, he would have stuck by me, no matter how I looked. Paul, my ex cannot understand why men would leave, or be horrible to their wives through such a serious disease. God, how I wish I could go back, but have to move forward. You will get through this. Thank god for your mom. I do wish Paul and I would have gotten counseling. That might have saved us. I just hate what situation you are in. I do hope, if possible, you two can save your marriage. I wish I would have. But I know there are situations where a marriage is so broken, it can't be salvaged. Do you communicate with your husband at all? Well, the most important thing now, is your health. You need positivity, and love. It might seem like it, but you're not alone.

Dx 2/15/2017, IDC, Left, 1cm, Stage IIA, Grade 2, ER+/PR+, HER2-, Dx 2/15/2017, IDC, Left, 1cm, Stage IIA, Grade 2, 1/13 nodes, ER+/PR+, HER2-, Surgery 3/29/2017 Lymph node removal: Underarm/Axillary; Mastectomy: Left Hormonal Therapy 4/21/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy 7/16/2017 Whole breast: Breast, Lymph nodes, Chest wall
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Jan 7, 2018 11:14PM jaymeb wrote:

Oh no, I'm so sorry, don't know how this posted twice, must have hit something on keyboard.🤦♀️🤦♀️

Dx 2/15/2017, IDC, Left, 1cm, Stage IIA, Grade 2, ER+/PR+, HER2-, Dx 2/15/2017, IDC, Left, 1cm, Stage IIA, Grade 2, 1/13 nodes, ER+/PR+, HER2-, Surgery 3/29/2017 Lymph node removal: Underarm/Axillary; Mastectomy: Left Hormonal Therapy 4/21/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy 7/16/2017 Whole breast: Breast, Lymph nodes, Chest wall
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Jan 7, 2018 11:46PM Faithonfire wrote:

Dear Jaymeb,

I appreciate all the support it means so much to me!

And to answer a few questions I can't blame any one thing for our current situation it was more like the perfect storm that allowed things to go off the rails this bad.

Yes we knew my husbands friend for years as he had his kids and he helped him get better job with his company etc, then she leaves him suddenly and takes kids, furniture very harsh breakup so he is devastated and bitter so we have him spend time with our family to cheer him up. The beginninong was fun,we adopted him which worked for a while as my husband and I noticed some strange habits he had but slowly he played us against each other and I refused to flirt or lead him on so I wound up eliminated from my own family by a person that convinced them all I abandoned THEM so anything they do to me is justified!

Turns out this freak is an online stalker and controls more of our family than anyone cares to admit! When I told you my daughter turned her back on me for her graduation and wouldn't even hug me.. had HIM sitting in my seat with our kids and my mother brother and I on the other side of the auditorium where she would only flip us off! This was all about a week before I was diagnosed.

I was SO sure that once they knew it was real and beyond my control they would change their attitudes and just be there for me any way they could!

I was wrong and cry every day because I can't travel and that's the ONLY way things could have gone this far! I just fell for Satan in a Sunday hat leading my family down an online bully bonding tactic and it slowly cost me everything in my life I was trying to live for! The worst part was I was always kind to him and he used that to kick me when I'm down in the worst possible way because a permanent restraining order protects his baby mama!

It won't be so easy to pull off once people see me again and know the truth of how I spent my time, and the fact that they didn't visit me ONCE but I abandoned THEM!

I ran their entire world and my every reward was a do over that never happened! Not fulfilling a promise makes it a confirmed LIE right?

suddenly I'm unable to do anything right and my basic needs were being denied because I fail to deserve fair treatment until I EARN it! The sicker I got the easier it became to take advantage of my symptoms to flair up by specific abuse used to manifest predicted response to justify selfish behavior!

It's going to be put right soon so I just have to hang in there and KNOW lies can't change the truth about my integrity or how I have been spending my time. I love my husband and I know he loves me too he just can't escape the social pressure that is changing his personality because it's real easy to act big behind a tiny screen! Dragging people out to the reality of accountability for their online lives and the damage it can do if not stopped.

Thanks for keeping me strong and in the right perspective this is all so crazy but it really can happen that fast

I will do whatever it takes to be vindicated and finally treated with the love and respect I not only deserve, I now DEMAND to be a part of my future!

Dx 6/25/2017, IDC, Both breasts, Stage IIIC, ER+, HER2- Chemotherapy 7/13/2017 Abraxane (albumin-bound or nab-paclitaxel), Cytoxan (cyclophosphamide), Doxil (doxorubicin), Methotrexate (Amethopterin, Mexate, Folex), Taxol (paclitaxel), Taxotere (docetaxel) Chemotherapy 9/1/2017 AC + T (Taxol) Surgery 1/8/2018 Lymph node removal: Left, Underarm/Axillary; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery 1/8/2018 Lymph node removal: Left, Sentinel, Underarm/Axillary; Mastectomy: Left, Right; Prophylactic mastectomy: Left, Right; Reconstruction (left): Nipple reconstruction, Tissue expander placement; Reconstruction (right): Nipple reconstruction, Tissue expander placement

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