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All TopicsForum: "Middle Age" 40-60(ish) Years Old With Breast Cancer → Topic: Pros and Cons of Tamoxifen

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 09:51AM

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 10, 2018 01:57AM jaymeb wrote:

pupmom

I do see we have the same stats. That is encouraging you have been cancer free for 6 1/2 years. That helps me feel more relieved, especially since we had the exact onco score. Not all my info is at the bottom. I've tried to add. Can't seem to add additional info. Now, I had 28 radiation treatments, and got two opinions for that. It was suggested due to a positive lymph node mostly. As you know, that helps with only local reoccurance, and has nothing to do with the survival rate. Did you do radiation?
Dx 2/15/2017, IDC, Left, 1cm, Stage IIA, Grade 2, ER+/PR+, HER2- (FISH) Surgery 3/29/2017 Lymph node removal: Underarm/Axillary; Mastectomy: Left Hormonal Therapy 4/22/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Jan 10, 2018 02:09AM 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.🙄

Dx 2/15/2017, IDC, Left, 1cm, Stage IIA, Grade 2, ER+/PR+, HER2- (FISH) Surgery 3/29/2017 Lymph node removal: Underarm/Axillary; Mastectomy: Left Hormonal Therapy 4/22/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Jan 10, 2018 02:15AM jaymeb wrote:

Faithonfire


Have you had surgery yet? If not, when? I'm hopeful that somehow your family will reunite. Again, you just have to concentrate on you, and getting better. Please keep me posted. Hugs, and prayers.🙏🙏

Dx 2/15/2017, IDC, Left, 1cm, Stage IIA, Grade 2, ER+/PR+, HER2- (FISH) Surgery 3/29/2017 Lymph node removal: Underarm/Axillary; Mastectomy: Left Hormonal Therapy 4/22/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Jan 10, 2018 05:45AM 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.

Life is what happens while we're making other plans. Dx 10/18/2011, IDC, 1cm, Stage IIA, Grade 1, 2/21 nodes, ER+/PR+, HER2-
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Jan 10, 2018 11:14PM Faithonfire wrote:

Hi jaymeb, pupmum and all

I just got home from the hospital a few hours ago and am now all settled in my bed surrounded by flowers and balloons and a space heater keeping me cozy so I stay put!

They took great care of me starting with very grumpy ride in at 430 am because I was fasting as Mom had to have her mcdonalds fix!!

Once they got me in and hooked up I got to try some neat new toys to help keep me from shivering called bear paws... it's a gown tie in back with plastic pockets for warm air flowing through knee length gown and calf compression massage leggings to prevent clots and keep me hooked up for 5 hr surgery. it was a true spa experience! I loved it and didn't remember anything about my trip down the hall or saying goodbye until I woke up back in my room with my 4 drains pinned to my gown but chest fully bound and port GONE FOREVER YAY!!! All who saw that before and after could see why I am so happy now that the circle bruise it caused is healing a pretty purple over a month since it was last used!! Point made so they were all very good for The pain management and used older drugs dilaudid instead of fentanyl that makes me snarky. Nurses were fighting for me I was having a blast and man you can't believe how huge my grafts are wrapped with the utmost care she is great at using all the extra space above c-scars And it is attaching well!

involved wraps cover my entire chest and 4 drains show optimal outputs so far! My breast organs and tumors with pins all went to lab along with 3 sentinel lymph nodes on left side so I'm pretty sure they got a fantastic response and awaiting final results in reports but my doc did not see anything with what she took and for her to stop in to see me before her office this morning was funnier than our conversation I don't remember after surgery! It's official now we got the best possible results and tons of studies interested in data!!

I am very happy with all that and I cant argue with success even if the chemotherapy was extremly harsh on my mentally that I am still actively seeking ANY alternative to tamoxafin for future cancer needs of ANY kind.

I'm pooped but need to eat more before drifting off again so I will fill you in on the family and friends stuff later

just wanted you all to know everyone took great care of me just like we knew they would and I'm now safe with Mom and can't wait to get a look at what size I will be once the swelling goes down a bit more but the extra set of drains was a very smart move and it's not as bad as it looks because it releases the pressure evenly and it's more muscle ache sore in pecs on top than sharp pain on sides as long as I keep my arms down which is much harder than it sounds on morphine with hot flashes ick! Wish me luck and lots of uninterrupted sleep!,yay a dark room too woo hoo


Dx 6/25/2017, IDC, Both breasts, Stage IIIC, ER+, HER2- Chemotherapy 7/14/2017 Abraxane (albumin-bound or nab-paclitaxel), Cytoxan (cyclophosphamide), Doxil (doxorubicin), Methotrexate (Amethopterin, Mexate, Folex), Taxol (paclitaxel), Taxotere (docetaxel) Chemotherapy 9/2/2017 AC + T (Taxol)
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Jan 11, 2018 08:23AM 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.


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 7/7/2016 Mastectomy: Left, Right Hormonal Therapy 7/15/2016 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Jan 13, 2018 04:32AM jaymeb wrote:

Linsey

Thank you for sharing those stats. I do find myself getting wrapped up, and worried about all this. I've heard of Luminal B, but to be honest, I really don't know what that means. Also, what is Basal?
Dx 2/15/2017, IDC, Left, 1cm, Stage IIA, Grade 2, ER+/PR+, HER2- (FISH) Surgery 3/29/2017 Lymph node removal: Underarm/Axillary; Mastectomy: Left Hormonal Therapy 4/22/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Jan 13, 2018 04:46AM 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🙏🙏🙏🙏
Dx 2/15/2017, IDC, Left, 1cm, Stage IIA, Grade 2, ER+/PR+, HER2- (FISH) Surgery 3/29/2017 Lymph node removal: Underarm/Axillary; Mastectomy: Left Hormonal Therapy 4/22/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Jan 13, 2018 04:55AM jaymeb wrote:

Oh, Lisey



If I'm reading right, you had tissue expanders? That's funny, iron bra of death, and true. I still have my tissue expander in, and yes, it's a pain in the ass!!! I wake up every morning with pain, and soreness. Tramadol helps. What was your experience with yours to take them out? I admire your attitude to be flat, and fearless. I can't wait to get this thing out next month, and the silicone put in. I pray the results will be a success

Dx 2/15/2017, IDC, Left, 1cm, Stage IIA, Grade 2, ER+/PR+, HER2- (FISH) Surgery 3/29/2017 Lymph node removal: Underarm/Axillary; Mastectomy: Left Hormonal Therapy 4/22/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Jan 13, 2018 04:56AM jaymeb wrote:

Faithonfire

Are you having reconstruction? Do you have expanders in?
Dx 2/15/2017, IDC, Left, 1cm, Stage IIA, Grade 2, ER+/PR+, HER2- (FISH) Surgery 3/29/2017 Lymph node removal: Underarm/Axillary; Mastectomy: Left Hormonal Therapy 4/22/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Jan 13, 2018 09:01AM Lisey wrote:

HI Jayme, Basal = Triple Negative. Luminal B is typically designated as low PR+ and high KI. I fit those descriptions, but the mammaprint says I'm Luminal A, so I was able to skip Chemo. Luminal B's don't do as well on hormonals as Luminal A's do, thus chemo can help.

Get the F'ers out (tissue expanders) was amazing. I suddenly felt like 'me' again without these alien spikey turtle shells inside my muscles. I don't handle pain well, and no one thought to see if I'd be a good fit for implants. I realize now having alien bodies inside my muscles like that was a bad fit mentally. I actually think I look better than when I had huge boobs (DD's), so I'm good with being flat. Plus my muscles aren't complaining anymore and I have my full strength back.

I hope you are comfortable with the implants, but if you aren't - you can always demand they remove them. Some women feel they are stuck with their decision, that is not the case. Even if one decides to be flat, they can always get implants again later on.

On the stats... just remember that science is figuring this stuff out and in a few years, we'll have cancer vaccines! I"m very hopeful of my chances so long as I don't recur within 5 years.

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 7/7/2016 Mastectomy: Left, Right Hormonal Therapy 7/15/2016 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Jan 13, 2018 09:15AM 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

Dx 6/25/2017, IDC, Both breasts, Stage IIIC, ER+, HER2- Chemotherapy 7/14/2017 Abraxane (albumin-bound or nab-paclitaxel), Cytoxan (cyclophosphamide), Doxil (doxorubicin), Methotrexate (Amethopterin, Mexate, Folex), Taxol (paclitaxel), Taxotere (docetaxel) Chemotherapy 9/2/2017 AC + T (Taxol)
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Jan 13, 2018 08:38PM Faithonfire wrote:

Dear liszy,

I greatly admire your decision to go flat and I am glad to hear it helped you heal faster but still leaves the option open in the future if the technology improves in a way to achieve reconstruction without implants that might sound better to you.

I did most of my research on braca2 gene and can't find anything on my mutation because I'm a mystery still. Funny but less than helpful in making informed decisions!

Of all current reconstruction options available in the United States I found the most advanced one that suited my goals mostly but I lacked enough mass to fill it myself so we went with tissue expanders over top of pec muscles inside skin left after removing entire organ structure intact of both breasts for full dissection in pathology with 3 sentynl lymphs showing nothing inside and got to keep other 2 on left along with my own nipple tissue cancer free banked and stitched above my c section scars for graft back in place with permanent implants and some fat injected around side skin of implants to even it out so I will put as much of me back as I had before kids. No clue what size that will be but I had lots of deflated skin from severe weight loss so I didn't drain as much as normal women do.

I think I am a podcast now for the operation too it was 8 hrs in total and now up for reviews for my final reports. The professionals share new procedures via internet and that's how my doctors found the skin saving double mastectomy option for me from a new practice in Arizona that just won a Gracie award for her pioneering work!

There are several options that I didn't qualify for that might interest you now and they mainly use some muscle from your back or abdomen and fill your skin with a flap of whatever else they can use to reconstruct without any implants and as much of you as they can attach for lumpectomy to full double reconstruction.

The scars are a little more pronounced and there is a second recovery site to handle so there is always pain with surgery but tolerable with proper management and some risks involved but it's usually the second option used for reconstruction if cancer remains encapsulated and skin is in good shape like mine was.

To be honest the worst part for me was having ptsd, I just finish the most brutal chemo I've ever experienced and THEN run in to a few less than kind plastic surgeons that mistake cancer for stupidity and try using moral indignation to justify surgical choices based on outdated statistics and more invasive and expensive treatments than nessicary because I just don't know any better! So one by one they will NOW march before the state medical ethics review board and find out what a proper shaming is from their PEERS that treated me properly with dignity and respect and see administrative policy change about outside referrals in the blink of my tear filled eye!

I know I'm not perfect and not always the easiest to work with because I demand accurate information that directly impacts my care now and in the future!

I had some ignorant old fart that just switched to cancer reconstructions from basic plastic surgery and tried to shame me as a bad mother for risking my LIFE for my vanity after refusing to wake up flat for a YEAR and being there for my daughters when they get diagnosed! I had to hold Mom back from belting this guy in his office so I told my therapist about it and he has quite a long list of people who will set that straight in short order!

Being a rape survivor before I got married and going on to have a marriage with 3 kids is amazing in its own right that years of therapy made my life possible... but to be told I am too vain to survive while keeping my entire body intact really made me loose it on this Snyde jerk so I told him even the man who tried to END my life had more humanity than to cut my breasts off and deny their value!! I told gimbal to go slam HIS in a car door then wait a YEAR to replace it FIRST!

I know I went a tad too far on that but to call a bald cancer patient in chemo VAIN for fighting to keep my genitalia I felt he needed a little perspective on the gender he chooses to treat that way for profit!

I am a far cry from a stripper looking for bigger tips or a sex object because I choose to remain as God made me! It's just hard to see that people really don't care about taking advantage of patients for profit as long as they aren't exposed as the social predators they have become until they realize who they just did that to happens to be a woman with integrity and a lot of friends all watching over me

Dx 6/25/2017, IDC, Both breasts, Stage IIIC, ER+, HER2- Chemotherapy 7/14/2017 Abraxane (albumin-bound or nab-paclitaxel), Cytoxan (cyclophosphamide), Doxil (doxorubicin), Methotrexate (Amethopterin, Mexate, Folex), Taxol (paclitaxel), Taxotere (docetaxel) Chemotherapy 9/2/2017 AC + T (Taxol)
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Jan 14, 2018 09:47AM 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.

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 7/7/2016 Mastectomy: Left, Right Hormonal Therapy 7/15/2016 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Jan 14, 2018 11:31AM pupmom wrote:

Oh, I would! Cause I'm that vain!

Life is what happens while we're making other plans. Dx 10/18/2011, IDC, 1cm, Stage IIA, Grade 1, 2/21 nodes, ER+/PR+, HER2-
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Jan 14, 2018 06:30PM 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.

Dx 6/25/2017, IDC, Both breasts, Stage IIIC, ER+, HER2- Chemotherapy 7/14/2017 Abraxane (albumin-bound or nab-paclitaxel), Cytoxan (cyclophosphamide), Doxil (doxorubicin), Methotrexate (Amethopterin, Mexate, Folex), Taxol (paclitaxel), Taxotere (docetaxel) Chemotherapy 9/2/2017 AC + T (Taxol)
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Jan 14, 2018 08:12PM Lisey wrote:

Faith, I feel for you and what is going on with your family and past. No one should be forced to do ANYTHING against their will. If you want to keep your breasts, and that is a feeling you hold strongly to, absolutely keep them.

Since your comment was directed at me, I responded just letting you know I'm exactly as God intended. I feel 100% whole. I feel I am no less of a woman and still very feminine without my real (DD) breasts or new muscle/skin flaps that are made to look like breasts. All of it is very personal and up to the individual, but for me, Vanity DID play a role in my decision. I don't want more scars. i don't want to mess with my God-given Booty or back muscles unless they are diseased. Why would I sacrifice them since they are healthy and whole? I like how I look and why would I mess with that? So when you said 'there are other options you could consider' trust me.. I've researched all of it and none of it rings true for me.

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 7/7/2016 Mastectomy: Left, Right Hormonal Therapy 7/15/2016 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Jan 15, 2018 01:08AM 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!!!!!

Dx 2/15/2017, IDC, Left, 1cm, Stage IIA, Grade 2, ER+/PR+, HER2- (FISH) Surgery 3/29/2017 Lymph node removal: Underarm/Axillary; Mastectomy: Left Hormonal Therapy 4/22/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Jan 15, 2018 01:46AM jaymeb wrote:

Hi Faithonfire

I'm glad you are recuperating from surgery. Sorry to say this, but I would like to slap that husband of yours for hanging up on you while in the hospital awaiting major surgery!!!!! I hope I didn't overstep saying that, but that pissed me off when I read it. If I read right, did you have benign biopsies before getting diagnosed with breast cancer? My first biopsy was benign, saying it was a papilloma. That God my breast surgeon insisted on another biopsy, as he could not believe it was benign. I didn't believe it was benign either. I KNEW I had breast cancer. Do you know how your instincts just take over, and that nagging feeling doesn't go away? Well, the second biopsy was malignant, and I was somewhat relieved, and not surprised. It hit me later though, and I cried and cried. What pissed me off is how did the pathologists get it wrong???? Usually, it's checked throughly by two pathologists!!! And I thought doctors don't make many mistakes. How stupid of me. Now if my surgeon trusted the first biopsy, lord only knows how much more advanced the cancer would have been? I just had a mammogram last week on the "healthy breast". Now, my breast is extremely dense, making it harder to find suspicious tumors. Although it's a 3D, and still don't fully trust just mammograms, hence, I'm thinking of having the other breast removed. But, then, there's the insurance companies, and what a pain in the ass it can be to deal with them!!!! When I went for my mammogram over a week ago, I had to call my insurance company to make sure they would cover it, as it was done in February of last year. Apparently, some insurance companies require that it's exactly on the date of one year, or a little after to cover it. What the hell??? Well, thank goodness my insurance pays for the calendar year. What I'm wondering, with a history of breast cancer with all of us, why wouldn't insurance companies cover for twice a year??? I will never understand the medical community!!! Ughhhh
Dx 2/15/2017, IDC, Left, 1cm, Stage IIA, Grade 2, ER+/PR+, HER2- (FISH) Surgery 3/29/2017 Lymph node removal: Underarm/Axillary; Mastectomy: Left Hormonal Therapy 4/22/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Jan 15, 2018 03:53AM 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.

Dx 6/25/2017, IDC, Both breasts, Stage IIIC, ER+, HER2- Chemotherapy 7/14/2017 Abraxane (albumin-bound or nab-paclitaxel), Cytoxan (cyclophosphamide), Doxil (doxorubicin), Methotrexate (Amethopterin, Mexate, Folex), Taxol (paclitaxel), Taxotere (docetaxel) Chemotherapy 9/2/2017 AC + T (Taxol)
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Jan 15, 2018 08:08AM Lisey wrote:

JaymeB, Thank you! That's my son and we were going to a mother / son Mascarade Ball at his school. (He's 10)

I too had very dense large breasts. I wore a bra 24/7 because I would be in pain if I didn't after a few hours, even in bed. I used to love my breasts when I was younger, but they just were too big when I had children. They didn't fit my frame, I looked like a porn star and they hurt! And the biggest thing was the mammogram failed me. I could feel the lump, but when I went in, they said I was normal. I had to demand an ultrasound and force the technician to focus on the palpable lump to see anything - and even then the tumor was hiding behind a cyst.

That cemented the mastectomy decision for me. If mammograms failed dense breasts like mine, I'd be a ticking time bomb if I kept them.

I hope you do well with the transition to implants and I'm glad to know you know your options if they don't work for you. All the best to you!

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 7/7/2016 Mastectomy: Left, Right Hormonal Therapy 7/15/2016 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Jan 15, 2018 08:36AM pupmom wrote:

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

Life is what happens while we're making other plans. Dx 10/18/2011, IDC, 1cm, Stage IIA, Grade 1, 2/21 nodes, ER+/PR+, HER2-
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Jan 18, 2018 11:24PM jaymeb wrote:

Hi Lisey

I thought that is your son, but I didn't want to assume. Do you have more children? I just have one, a 15 year old daughter. I wanted a boy as well, but that didn't work out. I'm divorced, but luckily my ex and I get along well, and put Reece first. She is what keeps me going.

It's hard to imagine you being a double D on your small frame, but I'm sure you didn't look like a "porn star". That was funny. You know, I was always a B cup, and wanted bigger boobs so bad. Well, after I gave birth, then a C cup. So, I went from perky B's to saggy C's. I couldn't afford a breast lift, so had to deal with it. Then I missed my perky B's. Well, be careful what you wish for.

I have friends with very large breasts, and some had a reduction. I would hear that it gave them back problems, and not fun. That changed me from being so envious. I also had a friend who had implants, shipped from California!!!!! Dial a boob. Lol. She got double D's, and not happy with them. She never needed it in the first place.🙄🙄🙄.

I just got a letter from my recent mammogram on my right "healthy breast". Apparently, all is good, and was stated I have extreme dense breasts. I still don't trust it, and especially when I read about other women that a mammogram has missed breast cancer. It's sad when we have to demand further testing, and dealing with insurance. I would think any woman that had breast cancer should get more in depth tests, no questions asked. Doubt it will ever happen. Sighhhhh.
Dx 2/15/2017, IDC, Left, 1cm, Stage IIA, Grade 2, ER+/PR+, HER2- (FISH) Surgery 3/29/2017 Lymph node removal: Underarm/Axillary; Mastectomy: Left Hormonal Therapy 4/22/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Jan 19, 2018 12:24AM 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.👍👍❤️❤️
Dx 2/15/2017, IDC, Left, 1cm, Stage IIA, Grade 2, ER+/PR+, HER2- (FISH) Surgery 3/29/2017 Lymph node removal: Underarm/Axillary; Mastectomy: Left Hormonal Therapy 4/22/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Jan 19, 2018 12:29AM jaymeb wrote:

Faithonfire

Just to let you know, there is still good men out there.
Dx 2/15/2017, IDC, Left, 1cm, Stage IIA, Grade 2, ER+/PR+, HER2- (FISH) Surgery 3/29/2017 Lymph node removal: Underarm/Axillary; Mastectomy: Left Hormonal Therapy 4/22/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Jan 19, 2018 04:44AM 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.
Dx 2/15/2017, IDC, Left, 1cm, Stage IIA, Grade 2, ER+/PR+, HER2- (FISH) Surgery 3/29/2017 Lymph node removal: Underarm/Axillary; Mastectomy: Left Hormonal Therapy 4/22/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Jan 19, 2018 06:14AM pupmom wrote:

Jaymed, I did not have chemo due to a low Onco Dx score of 14. The rule is that you can have the test done with up to 3 positive nodes. I have been on hormonal therapy for over 6 years now. I'm on the 10 year plan and am ok with that. SEs for me are now minimal. I don't mind questions! Hope you are doing well with your treatments!

Life is what happens while we're making other plans. Dx 10/18/2011, IDC, 1cm, Stage IIA, Grade 1, 2/21 nodes, ER+/PR+, HER2-
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Jan 19, 2018 12:08PM 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!


Dx 6/25/2017, IDC, Both breasts, Stage IIIC, ER+, HER2- Chemotherapy 7/14/2017 Abraxane (albumin-bound or nab-paclitaxel), Cytoxan (cyclophosphamide), Doxil (doxorubicin), Methotrexate (Amethopterin, Mexate, Folex), Taxol (paclitaxel), Taxotere (docetaxel) Chemotherapy 9/2/2017 AC + T (Taxol)
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Jan 19, 2018 12:45PM Lisey wrote:

HI Faith, that sounds like some crazy drama you are neck deep in. I would try my best to let all that go and focus on healing, not revenge or fighting to keep a man who doesn't want to stay. Totally not worth it. The harder you grasp, the more they will fight you and run away. I had a troubled son who was very difficult, I finally had to let go and 'Let God" so to speak. I couldn't continue to battle and I had to detach. It was probably the best ting I could have done.

Sometimes it takes years to heal relationships, and they will never heal by force, or anger or fighting... But by acceptance. if your children are not at a place to accept you, for your health, you'll need to let go of the expectation they should. Focus on your own body and healing and leave the rest to time and God for healing.

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 7/7/2016 Mastectomy: Left, Right Hormonal Therapy 7/15/2016 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Jan 19, 2018 04:01PM 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

Dx 6/25/2017, IDC, Both breasts, Stage IIIC, ER+, HER2- Chemotherapy 7/14/2017 Abraxane (albumin-bound or nab-paclitaxel), Cytoxan (cyclophosphamide), Doxil (doxorubicin), Methotrexate (Amethopterin, Mexate, Folex), Taxol (paclitaxel), Taxotere (docetaxel) Chemotherapy 9/2/2017 AC + T (Taxol)

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