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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.

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Posted on: Dec 28, 2017 10:51AM

Posted on: Dec 28, 2017 10:51AM

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 02:57AM 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-, 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 4/22/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy 7/17/2017 Whole breast: Breast, Lymph nodes, Chest wall
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Jan 10, 2018 03:09AM 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-, 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 4/22/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy 7/17/2017 Whole breast: Breast, Lymph nodes, Chest wall
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Jan 10, 2018 03:15AM 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-, 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 4/22/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy 7/17/2017 Whole breast: Breast, Lymph nodes, Chest wall
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Jan 10, 2018 06:45AM 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, Right, 1cm, Stage IIA, Grade 1, 2/21 nodes, ER+/PR+, HER2-
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Jan 11, 2018 12:14AM 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) Surgery 1/9/2018 Lymph node removal: Left, Underarm/Axillary; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery 1/9/2018 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 11, 2018 09:23AM 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 7/14/2016 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Jan 13, 2018 05:32AM 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-, 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 4/22/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy 7/17/2017 Whole breast: Breast, Lymph nodes, Chest wall
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Jan 13, 2018 05:46AM 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-, 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 4/22/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy 7/17/2017 Whole breast: Breast, Lymph nodes, Chest wall
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Jan 13, 2018 05:55AM 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-, 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 4/22/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy 7/17/2017 Whole breast: Breast, Lymph nodes, Chest wall
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Jan 13, 2018 05:56AM 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-, 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 4/22/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy 7/17/2017 Whole breast: Breast, Lymph nodes, Chest wall

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