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Topic: Anyone have a recurrence?

Forum: Alternative Medicine —

This forum is a safe, judgement-free place to discuss Alternative medicine. Alternative medicine refers to treatments that are used INSTEAD of standard, evidence-based treatment. Breastcancer.org does NOT recommend or endorse alternative medicine.

Posted on: Apr 29, 2018 07:33AM

vampeyes wrote:

Hello all,

I am looking for women who have opted out of HR to see if anyone has had a recurrence. I am currently taking Tamoxifen, but I am not liking the SE's or the scares that come from the SE's. Blood clots in my lungs that could kill me??? YIKES!!! Is Tamoxifen worth that??? I am scared right now and contemplating a trip to the ER to make sure all is good.

Cheryl

P.S. Some girls and I worked on a Breast Cancer Questionnaire, we have been currious about side effects and reccurence. If you are interested in filling it out, no emails, no names are collected. You can see the results yourself after you take it as well.

Diagnosed at 41. Oncotype 21 Dx 9/20/2017, IDC, Left, 1cm, Grade 2, 0/3 nodes, ER+/PR+, HER2- (FISH) Surgery 10/18/2017 Lumpectomy: Left Surgery 11/15/2017 Lumpectomy: Left Radiation Therapy 1/29/2018 Whole-breast: Breast Hormonal Therapy 3/1/2018 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Apr 29, 2018 08:35AM dtad wrote:

Hi there. I opted out of anti hormone therapy from the start. I'm 3 years NED. I do take supplements, exercise and lost 30 pounds since diagnosis. Good luck to all...

Dx 3/20/2015, IDC, Left, 1cm, Stage IA, Grade 2, ER+/PR+, HER2- Dx 4/10/2015, ILC, 1cm, Stage IA, Grade 2, ER+/PR+, HER2- Surgery 5/21/2015 Lymph node removal: Sentinel; Mastectomy: Left, Right; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
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May 22, 2018 10:07AM AnaMaria34 wrote:

Hi. I did have a recurrence. It showed up 8 months after the original diagnosis, so I don't know that Tamoxifen would have stopped it to begin with. Being that I wouldn't have been able to be on Tamoxifen for all that long while I waited for my surgeries.

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May 22, 2018 10:51AM edwards750 wrote:

It’s a tough call. I took Arimidex initially until I was DX with borderline osteoporosis and Arimidex attacks the bones so my MO switched me to Tamoxifen. I took it for 4 years. I had joint pain and difficulty concentrating sometimes but other than that nothing unmanageable. I know other women were not as fortunate. When it affects your QOL though maybe it’s time to rethink taking it.

I have a friend whose daughter decided not to take it. She is a few years out from her DX. So far, so good.

Frankly I was afraid not to. To me it was a kind of extra insurance policy to ward off a recurrence. No guarantees of course but after my surgery and radiation I felt like I needed some kind of preventive type tablet.

To each her own though. There are women who opted out and are NED years after their DX and doing fine. It’s a roll of the dice. Your call -just don’t second guess yourself or look back and wonder what if...

Diane

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May 23, 2018 09:14AM - edited May 23, 2018 09:15AM by dtad

Edwards...completely agree! We all have to make our own informed decisions and not look back!

Dx 3/20/2015, IDC, Left, 1cm, Stage IA, Grade 2, ER+/PR+, HER2- Dx 4/10/2015, ILC, 1cm, Stage IA, Grade 2, ER+/PR+, HER2- Surgery 5/21/2015 Lymph node removal: Sentinel; Mastectomy: Left, Right; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
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May 24, 2018 12:01PM bluepearl wrote:

If you are afraid of blood clots with tamoxifen (after 5 years is the risker time) then take a NOAC....new oral anticoagulant..ie...blood thinner. I am for irregular heartbeat but at the same time, it protects against tamoxifen clots....lung emboli and deep vein thrombosis.

Dx 1/6/2011, IDC, 1cm, Stage I, Grade 1, 0/7 nodes, ER+/PR+, HER2- Surgery 2/11/2011 Lymph node removal: Left, Underarm/Axillary; Mastectomy: Left Dx 2/2013, IDC, <1cm, Stage I, Grade 3, 0/3 nodes, ER+/PR+, HER2- Surgery 3/9/2013 Lymph node removal: Right, Sentinel; Mastectomy: Right Hormonal Therapy 3/17/2013
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May 24, 2018 03:25PM dlb823 wrote:

I refused an A/I after trying one for a very short time and having a very severe SE, and went the natural route instead. 6 years out I had a metastatic recurrence. I don't blame my recurrence on not doing an A/I, but the ironic thing was, after I was dx'd w/bone mets, my first line of tx as a different A/I, which turned out to be a very easy drug for me. These are decisions we each have to make for ourselves based on our dx's, personal risk factors, etc., and there's still somewhat of a crapshoot element to it all because no one can tell us with absolute certainty what causes bc, when metastasis begins (could be different for each of us), or which meds will absolutely prevent it or work for us after it happens. I would also say, don't compare yourself to or follow what others do. Their bodies, disease and future risk might be entirely different than yours.

Deanna "The soul would have no rainbow if the eyes had no tears" Native American proverb Dx 2/1/2008, 1cm, Stage IIA, Grade 3, 1/16 nodes, ER+/PR+, HER2- Dx 1/3/2014, Stage IV
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May 25, 2018 05:41AM vampeyes wrote:

Thanks ladies for your response. Currently I am trying a different brand of Tamoxifen in hopes the SE's will be better. only day 3 so time will tell.

Diagnosed at 41. Oncotype 21 Dx 9/20/2017, IDC, Left, 1cm, Grade 2, 0/3 nodes, ER+/PR+, HER2- (FISH) Surgery 10/18/2017 Lumpectomy: Left Surgery 11/15/2017 Lumpectomy: Left Radiation Therapy 1/29/2018 Whole-breast: Breast Hormonal Therapy 3/1/2018 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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May 26, 2018 04:23AM Momine wrote:

Vampeyes, statistically, hormone blockers cut your residual recurrence risk (after standard treatment) in half. How great your benefit will be depends on how great your risk is.

Dx 6/1/2011, ILC, 5cm, Stage IIIB, Grade 2, 7/23 nodes, ER+/PR+, HER2- Chemotherapy 6/20/2011 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxotere (docetaxel) Surgery 9/13/2011 Mastectomy: Left, Right Radiation Therapy 1/9/2012 Surgery 3/8/2012 Prophylactic ovary removal Hormonal Therapy 4/1/2012 Femara (letrozole)
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May 27, 2018 12:32AM Blinkie wrote:

vampeyes - After treatment for DCIS I was offered tamoxifen and did not take it. Nine years later another diagnosis. I went through surgery and radiation on the other side (for invasive ductal carcinoma) and was offered anastrozole. I've taken it for two years. I plan on continuing unless it starts causing problems that make my daily life too miserable. So far, it's okay.

I don't regret not taking the tamoxifen. In a previous post Diane (edwards750) said it well: "Your call -just don't second guess yourself or look back and wonder what if..."

Dx 3/2007, DCIS, Right, 1cm, Stage 0, Grade 3, ER+/PR- Dx 5/2016, DCIS/IDC, Left, <1cm, Stage IA, Grade 1, ER+/PR-, HER2- Hormonal Therapy 9/1/2016 Arimidex (anastrozole) Radiation Therapy Breast Surgery Lumpectomy: Left Radiation Therapy Breast, Lymph nodes Surgery Lumpectomy: Right
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May 27, 2018 01:22AM - edited May 27, 2018 01:24AM by GreenEyes81

I refused the first time, 6 months later I had a new lump. One doctor feels that Tomixfan would have stoped it...another doctor feels no one will ever know. With the 2nd dx...I will start taking it in a few months. I told my doctor if it turns me in to a crazy lady, I WILL stop. lol


Dx 7/21/2017, DCIS/IDC, Right, 1cm, Stage IA, Grade 2, 0/4 nodes, ER+/PR+, HER2- Surgery 8/9/2017 Lymph node removal: Sentinel; Mastectomy: Right Dx 4/18/2018, DCIS/IDC, Right, Stage IA, Grade 1, 0/1 nodes, ER+/PR+, HER2- Surgery 5/2/2018 Radiation Therapy 5/27/2018 Whole-breast: Breast, Lymph nodes, Chest wall
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May 27, 2018 06:39AM vampeyes wrote:

I appreciate you ladies for chiming in. I went to see a natualpath and he told me if it was his mother he would tell her to take it and he would throw everything at it to help with the SE's. So far the SE's are not bad with this new Tamoxifen, fingers crossed it contiunes this way. :)

Diagnosed at 41. Oncotype 21 Dx 9/20/2017, IDC, Left, 1cm, Grade 2, 0/3 nodes, ER+/PR+, HER2- (FISH) Surgery 10/18/2017 Lumpectomy: Left Surgery 11/15/2017 Lumpectomy: Left Radiation Therapy 1/29/2018 Whole-breast: Breast Hormonal Therapy 3/1/2018 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Jun 15, 2018 02:19PM Crosbyfan1987 wrote:

I am also thinking of saying no to letrozole.

Dx 1/31/2018, IDC, Left, 1cm, Stage IA, Grade 2, ER+/PR+, HER2- Surgery 3/13/2018 Lumpectomy; Lymph node removal: Sentinel
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Jun 15, 2018 03:28PM nonomimi5 wrote:

I agree with the naturalpath - I would do the hormonal therapy and try different brands/meds out there until you find the better med, and throw in whatever you can to help with the SE. I will be starting hormone therapy early July

DX at 53. Surgery at 54. Oncotype 17 Dx 3/23/2018, DCIS/IDC/IDC: Tubular, Right, 2cm, Stage IIA, Grade 2, 0/3 nodes, ER+/PR+, HER2- (IHC) Surgery 4/30/2018 Lumpectomy; Lymph node removal Radiation Therapy 5/29/2018 Breast Hormonal Therapy 7/1/2018 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Jun 15, 2018 08:10PM - edited Jun 15, 2018 08:10PM by vampeyes

I am staying on the Tamoxifen, so far the new prescription seems to be ok. I am also on Tumeric, a few other supplements and looking into starting the Keto diet. This scares me, it's a BIG, no HUGE change! Shocked

Diagnosed at 41. Oncotype 21 Dx 9/20/2017, IDC, Left, 1cm, Grade 2, 0/3 nodes, ER+/PR+, HER2- (FISH) Surgery 10/18/2017 Lumpectomy: Left Surgery 11/15/2017 Lumpectomy: Left Radiation Therapy 1/29/2018 Whole-breast: Breast Hormonal Therapy 3/1/2018 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Jun 15, 2018 08:17PM Fiddler wrote:

Vampeyes, I would do some research about the keto diet. Someone recommended it to me and I told a friend who said it is dangerous and affects your metabolism. I also have kidney problems so I tend to stay away from supplements and crazy diets...but if I were you, would want to research it anyway.

Alana Dx 6/24/2016, IDC, Left, 3cm, Stage IIA, Grade 3, 0/2 nodes, ER-/PR-, HER2+ Surgery 8/7/2016 Lumpectomy: Left; Lymph node removal: Sentinel Chemotherapy 9/25/2016 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Targeted Therapy 10/16/2016 Herceptin (trastuzumab) Radiation Therapy 12/26/2016 Whole-breast: Breast
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Jun 15, 2018 08:43PM vampeyes wrote:

Thanks Fiddler, been reading about it so much my head hurts. lol

Diagnosed at 41. Oncotype 21 Dx 9/20/2017, IDC, Left, 1cm, Grade 2, 0/3 nodes, ER+/PR+, HER2- (FISH) Surgery 10/18/2017 Lumpectomy: Left Surgery 11/15/2017 Lumpectomy: Left Radiation Therapy 1/29/2018 Whole-breast: Breast Hormonal Therapy 3/1/2018 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Jun 15, 2018 08:50PM Meow13 wrote:

When I said no to chemo, my oncologist pushed AI drugs. No permanent sides effects, you probably won't have any side effects. BS, I do have permanent side effects those drugs took a toll on my body. When you are 1st diagnosed you know very little snd tend to do what doctor says because hey you have cancer. I just hope it was helping me, but guess what no way to know.

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Jun 15, 2018 09:20PM mittmott wrote:

I had a lump, it was lcis, pre cancer they put me on tamaxofin.. I had some runs from it. Came off it. Next year new lump.. Turned out to be nothing, but I got scared .. Took the tamaxofin for a year. Third year third lump, this time stage 1 cancer. Lumpectomy and rads... Onc took me off everything. She said if such a small cancer could still break through even on tamaxofin, then it wasn't working for me. She said the tam... should have stopped it. I went 6 years had a recurrence same breast. Decided on a double mast, couldn't do lump/radiation on same brease again anyway. They still never put me back on anything.stage 1 again... It's been 10.5 years now. I'm ok.

Dx 9/2000, IDC, <1cm, Stage I, Grade 3, 0/10 nodes, ER+/PR+, HER2- Surgery 9/8/2000 Lumpectomy: Left Dx 9/2006, IDC, <1cm, Stage I, Grade 3 Surgery 9/1/2006 Lymph node removal: Left; Mastectomy: Left, Right; Reconstruction (left): Latissimus dorsi flap, Tissue expander placement; Reconstruction (right): Latissimus dorsi flap, Tissue expander placement
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Jun 17, 2018 12:27AM dlb823 wrote:

Re. a keto diet... what’s actually recommended is a therapeutic keto diet -/ not the high proteinhigh fat version of keto. I suggest reading The Metabolic Approach To Cancer by Dr. Nasha Winters If you’re thinking about incorporating keto.

Deanna "The soul would have no rainbow if the eyes had no tears" Native American proverb Dx 2/1/2008, 1cm, Stage IIA, Grade 3, 1/16 nodes, ER+/PR+, HER2- Dx 1/3/2014, Stage IV
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Jun 17, 2018 07:15AM vampeyes wrote:

Thanks Deanna, I will be looking that book up to read as well. Currently I am reading Keto for Cancer, but it's high fat, low protein and low carb. It's such a change from what we were raised to believe! All the eggs they say to eat, holy hannah!

Diagnosed at 41. Oncotype 21 Dx 9/20/2017, IDC, Left, 1cm, Grade 2, 0/3 nodes, ER+/PR+, HER2- (FISH) Surgery 10/18/2017 Lumpectomy: Left Surgery 11/15/2017 Lumpectomy: Left Radiation Therapy 1/29/2018 Whole-breast: Breast Hormonal Therapy 3/1/2018 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Jul 22, 2018 11:56PM Onejeno wrote:

I was initially diagnosed in 2006, had surgery and chemo, was all clear in 2007 and put on Tamoxofin. I found the side effects crazy, bone pain, fatigue, I was a single mom with three young active sons, couldn't do it. Went off meds about 6 months post chemo. Lived just fine, got better, no fatigue, no pain, all good. fast forward to 2016, got my "cure" of 10 years cancer free, felt wonderful. Feb 2017 it returned. 10 years later. Had to redo all the chemo, radiation, surgeries, etc. Refused Tamoxofin this time, wasn't going to deal with it. Went on Aromasin, have had zero side effects and so far so good, no signs of cancer returning (again) I have been on aromasin for almost a year now, will most likely be on it for the next 5 anyway. I found the effects of tam were not worth the "possible" benefits of it.

Dx 10/19/2006, IDC/IBC, Both breasts, 3cm, Stage IB, ER+, HER2+ Surgery 5/31/2007 Mastectomy: Left, Right; Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Dx 2/15/2017, ILC/IBC, Both breasts, 5cm, Stage IIIC, ER+, HER2+ Chemotherapy Carboplatin (Paraplatin), Taxotere (docetaxel) Surgery Reconstruction (left); Reconstruction (right) Surgery Lymph node removal: Underarm/Axillary Hormonal Therapy Femara (letrozole) Radiation Therapy Whole-breast: Breast, Lymph nodes, Chest wall Surgery Lumpectomy
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Jul 30, 2018 10:08AM JoE777 wrote:

2012Took one year of femara one year of aromasin then stopped because of side effects. This time last year began occasion pain in left hip and back. February this year diagnosed with metastatic breast cancer in sacrum and iliac joint. Back on femara in combo with kisqali and monthly infusion of zometo. Out of the wheelchair and back walking.

Dx 2/2012, IDC, Left, 2cm, Stage IIA, metastasized to bone, Grade 1, 0/1 nodes, ER+/PR+, HER2- Surgery 4/3/2012 Lumpectomy: Left; Lymph node removal: Sentinel Hormonal Therapy 1/7/2018 Femara (letrozole) Dx 2/2018, IDC, Stage IV, metastasized to bone/lungs, Grade 1, ER+/PR+, HER2- Hormonal Therapy Aromasin (exemestane), Femara (letrozole) Radiation Therapy Whole-breast: Breast, Lymph nodes Chemotherapy Other Radiation Therapy External: Bone Targeted Therapy Kisqali

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