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Topic: thinking of quitting

Forum: Hormonal Therapy - Before, During, and After —

Risks and benefits, side effects, and costs of anti-estrogen medications. Note: Please remember that there are good experiences and bad with ALL treatments and this is a safe place to share YOUR experience, not to be influenced or influence others.

Posted on: Jul 15, 2020 03:53PM

erin_t wrote:

I'm 44. Have been doing lupron plus femara for a year. I can't take the insomnia / depression anymore.

I was stage IIb, ER+ PR- HER2- and my oncotype was 24 or 25. I did chemo, radiation, axillary node dissection. I'm done. I can't live like this anymore.

According to this: http://www.lifemath.net/cancer/breastcancer/therapy/ the difference between hormone therapy and not is 5%. Can this be true? Am I suffering this much for a 5% reduced risk?

Dx 11/13/2018, IDC, Right, 2cm, Stage IIB, Grade 2, 14/2 nodes, ER+/PR-, HER2- (FISH) Surgery 12/9/2018 Lumpectomy: Right Chemotherapy 1/23/2019 AC + T (Taxol) Hormonal Therapy 3/20/2019 Femara (letrozole) Surgery 7/18/2019 Lymph node removal: Underarm/Axillary Radiation Therapy 8/13/2019 Whole-breast: Breast, Lymph nodes
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Jul 15, 2020 05:21PM Salamandra wrote:

It is possible - your personal risk impact depends on a lot of factors.

Have you spoken with your oncologist? There are many other hormonal options. Like the birth control pill, one may make you crazy and the other one is like a sugar pill, and for your sister it could be the exact opposite.

Dx at 39. 1.8cm. Oncotype 9. Dx 9/19/2018, IDC, Right, 1cm, Stage IA, Grade 2, 0/3 nodes, ER+/PR+, HER2- (FISH) Surgery 10/17/2018 Lumpectomy; Lymph node removal: Sentinel Hormonal Therapy 11/1/2018 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy 12/2/2018 Whole-breast: Breast Hormonal Therapy 12/18/2019 Fareston (toremifene)
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Jul 15, 2020 07:05PM erin_t wrote:

I called. He hasn't called back yet.

I'm exhausted. I can't be a good mother like this. I do nothing but cry. It's been a year. Countless antidepressants tried. I'm better now but this can't go on. Constantly looking for help with caring for my daughter because i don't have the strength to look after her on my own for any length of time. Barely getting through every day. Barely.

Dx 11/13/2018, IDC, Right, 2cm, Stage IIB, Grade 2, 14/2 nodes, ER+/PR-, HER2- (FISH) Surgery 12/9/2018 Lumpectomy: Right Chemotherapy 1/23/2019 AC + T (Taxol) Hormonal Therapy 3/20/2019 Femara (letrozole) Surgery 7/18/2019 Lymph node removal: Underarm/Axillary Radiation Therapy 8/13/2019 Whole-breast: Breast, Lymph nodes
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Jul 16, 2020 10:18AM farmerlucy wrote:

Erin- the middle ground of just Tamoxifen might be sooo much easier than suppressing your ovaries and the AI. Definitely worth a try. I struggled through four years of varying hormone suppressors.

I’ve written letters to my onco and then faxed them. That seems to get their attention because there is a paper trail. Explain your fragile emotional state. See what your recurrence risk is on Tam vs what you’re doing. Tam acts in a difference way that the AI. Worth a try?

Dx at 51 after a preventive mx that wasn't. Oncotype dx 3. 3D tattoos from Vinnie! PTSD?? You are not alone! Surgery 2/21/2012 Prophylactic mastectomy; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Dx 2/24/2012, IDC, Right, 1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- (FISH) Surgery 3/11/2012 Lymph node removal: Sentinel Surgery 7/22/2012 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Hormonal Therapy 4/10/2013 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 4/14/2015 Prophylactic ovary removal
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Jul 18, 2020 08:48PM - edited Jul 18, 2020 08:49PM by Jinx27

Erin_t

As a younger woman (31) I understand exactly where your coming from. Having our ovaries suppressed and taking aromatase inhibitors makes us feel 5x our age, depressed along with a slew of other side effects. How many positive nodes did you have? This combined with your age and cancer type is probably why they want you do continue.

Im on year 5 and I want to give up too. I used the same calculator as you my numbers are a bit different, according to the numbers, I have a higher risk of recurrence without the meds.

Sometimes Dr's can lower your dose or switch meds, talk it out with your oncologist. I hope it goes well.

Dx 9/8/2015, DCIS/IDC, Both breasts, 4cm, Stage IIB, Grade 3, 3/36 nodes, ER+/PR+, HER2- Surgery 11/17/2015 Reconstruction (left): Free TRAM flap; Reconstruction (right): Free TRAM flap Chemotherapy 1/1/2016 AC + T (Taxol) Hormonal Therapy 8/29/2016 Arimidex (anastrozole)
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Jul 20, 2020 03:53PM VioletKali wrote:

((hugs))

I AM A QUITTER. I was on an AI and OS for 6 months and called it quits. I admit that I value quality of life, palliative care, and not suffering, moreso than many. I am a Nurse and value quality of life over quantity. I was diagnosed at age 31, just 3 weeks shy of my 32nd Bday.I quit chemo too.

*I* do not believe that the % are enough to warrant the side effects I experienced. I have read the data, and it isn't worth it to *me*.

I admit that I am a member of Dignitas International, and will not allow myself to suffer if I were to have metastatic cancer that failed to respond to treatment that did not decrease my quality of life.

My tumor was 1.7cm, 10% of it was noted to be DCIS. No family history of cancer at all. Discontinued Chemo d/t uncontrollable side effects which caused hospitalizations, blood transfusions, and poor quality of life. I am doing well! Dx 6/19/2014, DCIS, Stage 0 Dx 6/19/2014, IDC, 1cm, Stage IA, Grade 3, 0/10 nodes, ER+/PR+, HER2+ Surgery 8/18/2014 Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Targeted Therapy 9/15/2014 Herceptin (trastuzumab) Chemotherapy 9/15/2014 Carboplatin (Paraplatin), Taxotere (docetaxel)
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Jul 20, 2020 05:32PM ThreeTree wrote:

Jinx27 - Not to distract too much from the actual point of this thread, I do want to say that as an older woman, these AI's make us feel 5X our age and depressed to, along with many other side effects. It's not just a youth thing by any means. Granted a younger woman might have to put up with some of this longer over a lifetime. I do understand what you are saying, but think it is important that we all make it well known how badly these treatments make all of us feel, so that word might get out to researchers and any other powers that be to do their best to get better stuff out there. I have frankly been shocked at how "low level" the available treatments really are.

Good luck to you!

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Jul 21, 2020 04:42PM erin_t wrote:

thank you everyone. Please anyone who has thought of quitting or has quit continue to respond. I just wanted to say I am listening.

I stopped taking the femara/letrozole five days ago and I am going to stop the ovarian suppression (lupron). I have an oncologist appointment on Friday, in 3 days. I will tell him this and that I will consider tamoxifen. But I want to take a break from all this for a month or something, just to see what my baseline is like now. I have had a lot of stress in my life the past couple of years, with the cancer and getting divorced, but I know for a fact I went insane right after my first lupron shot 489 days ago. It's been 12 days since my last shot.

Erin

Dx 11/13/2018, IDC, Right, 2cm, Stage IIB, Grade 2, 14/2 nodes, ER+/PR-, HER2- (FISH) Surgery 12/9/2018 Lumpectomy: Right Chemotherapy 1/23/2019 AC + T (Taxol) Hormonal Therapy 3/20/2019 Femara (letrozole) Surgery 7/18/2019 Lymph node removal: Underarm/Axillary Radiation Therapy 8/13/2019 Whole-breast: Breast, Lymph nodes
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Jul 21, 2020 04:43PM erin_t wrote:

Also ThreeTree I totally agree with you. All they have is brute force. And I suppose I should be grateful for it but I'm not.

Dx 11/13/2018, IDC, Right, 2cm, Stage IIB, Grade 2, 14/2 nodes, ER+/PR-, HER2- (FISH) Surgery 12/9/2018 Lumpectomy: Right Chemotherapy 1/23/2019 AC + T (Taxol) Hormonal Therapy 3/20/2019 Femara (letrozole) Surgery 7/18/2019 Lymph node removal: Underarm/Axillary Radiation Therapy 8/13/2019 Whole-breast: Breast, Lymph nodes
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Jul 21, 2020 07:25PM Salamandra wrote:

Hi Erin,

I hope your oncologist is supportive and helpful.

With my oncologist, I found it helpful to hammer home the point that my likely alternative if tamoxifen didn't work out was quitting, not trying OS/AI. She became a lot more creative/open about troubleshooting after that. I ended up on an alternate SERM not usually offered to premenopausal women, that thank goodness did not give me the issues that tamoxifen did.

Good luck!

Dx at 39. 1.8cm. Oncotype 9. Dx 9/19/2018, IDC, Right, 1cm, Stage IA, Grade 2, 0/3 nodes, ER+/PR+, HER2- (FISH) Surgery 10/17/2018 Lumpectomy; Lymph node removal: Sentinel Hormonal Therapy 11/1/2018 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy 12/2/2018 Whole-breast: Breast Hormonal Therapy 12/18/2019 Fareston (toremifene)
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Jul 28, 2020 08:53AM - edited Jul 28, 2020 08:54AM by NattyBafterCancer

hello there....

I actually decided to call it quits after about 2.5yrs... side effects are horrible yes...but for me it's more about hivibg nyself the opportunity to have a child.....i started Lupron at age 29 (2017) the same time they started me on chemo....i stoped Feb 2020; ill be 33 in a couple of months....im nervous yes, but also confident in the fact that no matter when i would have chosen to stop, cancer is so layered, independent with a mind of its own.... im technically ALWAYS at risk. .so i decided to take a break in hopes that within the next yr or so, my cycle will begin.....i was on both lupron & exemestane pills 25mg and whewwww those dide effects😫...like everyone has said, i feel & felt 3x my age....

I feel like now however im experiencing some other side effects as it starts to leave my system

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Jul 28, 2020 09:07AM erin_t wrote:

NattyBafterCancer, what side effects are you experiencing now?

I talked to my MO. He was not in favor of this, but I'm going to take a couple of months off the lupron/letrozole, see how I feel, then maybe (probably?) start tamoxifen. If I don't do any hormone therapy at all, I have a 30% chance of recurrence. Nobody likes that number, but my quality of life (fatigue, depression) is not good.

I guess people say tamoxifen is not good either. But if I feel better after quitting the ovarian suppression at least I'll have enough information to make a choice.

He says my period will start again which is pretty funny since I just gave away all my tampons and pads. But it might not, I'm 44 1/2 so who knows.




Dx 11/13/2018, IDC, Right, 2cm, Stage IIB, Grade 2, 14/2 nodes, ER+/PR-, HER2- (FISH) Surgery 12/9/2018 Lumpectomy: Right Chemotherapy 1/23/2019 AC + T (Taxol) Hormonal Therapy 3/20/2019 Femara (letrozole) Surgery 7/18/2019 Lymph node removal: Underarm/Axillary Radiation Therapy 8/13/2019 Whole-breast: Breast, Lymph nodes
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Jul 28, 2020 04:24PM Moderators wrote:

Dear NattyBafterCancer,

Welcome to the BCO community. We are so glad that you reached out to our members and shared your story. We hope that you will stay connected here and keep us all posted on how things go for you. Please reach out to us if we can help you navigate your way around the discussion boards. We are here for you.

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Jul 31, 2020 04:08PM Gigi9968 wrote:

Hi. I'm pretty new here and recently started hormone therapy. (Lupron Depot shots). Had my 2nd shot today and am starting on Letrozole (pill) today. I haven't had any "severe" side effects yet, but have felt some depression and fatigue. I'm just wondering if the side effects get worse with each shot?

Also, I know your pill is different from mine, but curious to know how it has affected you also? Did you start the pill same time you started Lupron?


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Jul 31, 2020 05:17PM erin_t wrote:

Gigi, I don't think it got worse with each shot, speaking for myself. I would guess how you feel now is how you're going to feel, at least with regard to the lupron. When I stopped taking the letrozole a couple weeks ago, I would say nothing much changed either. I had some aches that went away but then they tended to go away at some point anyway. So either that means I had no side effects from the letrozole, or they're irreversible, but that's not too likely, so maybe they haven't let up yet. I have another week before I would have gotten my next lupron shot so I don't know about that yet either.


Erin


Dx 11/13/2018, IDC, Right, 2cm, Stage IIB, Grade 2, 14/2 nodes, ER+/PR-, HER2- (FISH) Surgery 12/9/2018 Lumpectomy: Right Chemotherapy 1/23/2019 AC + T (Taxol) Hormonal Therapy 3/20/2019 Femara (letrozole) Surgery 7/18/2019 Lymph node removal: Underarm/Axillary Radiation Therapy 8/13/2019 Whole-breast: Breast, Lymph nodes
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Jul 31, 2020 05:59PM - edited Jul 31, 2020 06:00PM by voraciousreader

erin...i am much older than you...but i did tamoxifen and lupron for 2 1/2 years, then, once I was finally menopausal...i did letrozole for 6 more years. For sure, my body felt like it was assaulted. However, my medical oncologist was a saint in working with. me through my side effects. Everyone 's side effects are unique to themselves and should never be diminished because QOL is extremely important. That said, I have subsequently been diagnosed with arthritis and Ehler Danlos Syndrome, so my pain can be associated with those two disorders more so than the ovarian suppression and endocrine therapy. Can't begin to tell you how many orthopedic surgeries I have had.....however..


what i want you to know is that having the ear and compassion of a great team, helps. And....depression? My best treatment to keep the depression at bay is.....walking...and reading books. Find whatever it is that makes your heart sing and your core will feel better...and if that doesn't work...join a group or consider meds....


i am approaching 11 years away from my diagnosis. My life is full and my heart sings. I promise you will get there...start by taking baby steps. Speak to your oncology team and tell them how you feel....the first step is always the hardest...

Doctor told me regarding my prognosis that I WASN'T on the Titanic! Hmmm...Really?....Okay! 02/2010 Pure Mucinous Breast Cancer, Oncotype DX 15, Stage 1, Grade 1, 1.8 cm, 0/2 nodes, ER+ 90% /PR+ 70% HER2- (+1)
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Aug 7, 2020 08:08PM havefaithtoday wrote:

Erin, how are you feeling now? I totally understand your pain and suffering. Dealing with similar stuff as well and questioning everything. I think about QOL everyday and at the same time have recurrence fear every day. I know the stress and anxiety are not helpful. This is hard....

Have Faith Today! Dx 10/29/2019, IDC, Right, 2cm, Stage IIB, Grade 3, 1/3 nodes, ER+/PR+, HER2- Surgery 11/19/2019 Lumpectomy: Right; Lymph node removal: Sentinel Chemotherapy 12/23/2019 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 3/23/2020 Whole-breast: Breast, Lymph nodes
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Aug 12, 2020 05:13PM dchouse wrote:

I too am thinking of quitting the Femara. I have tried talking to the oncologist and was met with a very base response. He wanted to know where I went to medical school and did I have a degree. I then made an appointment and talked to my surgeon who was more understanding and told me it was totally my choice. But when pressed, he said he recommended I try and stay on it. After being on this for about 14 months, the side effects are becoming almost unbearable. Mood swings with very dark episodes, crying out of nowhere, not sleeping at all one night then sleeping 10 hours the next, joint and muscle pain, fatigue and not-getting-off-the-couch lack of energy at times, weight gain, exacerbating carpal tunnel in both wrists. I have also worked the graphs at lifemath.net and the difference between being on the medication verses none is extremely minimal. I was told that my survival rate with medication is 98% and without medication it is 97%. But my oncotype score was 19 with a 6% risk of recurrence at 9 years while taking Femara so these numbers don't add up. I have a one-year follow up with the radiologist this Thursday and will talk with him about this medication. I have had the genetic testing done and it was all negative and there is no history of breast cancer in the family.

Dx 2/2019, IDC, Left, <1cm, Stage IA, Grade 2, 0/4 nodes, ER+/PR+, HER2- Hormonal Therapy Femara (letrozole) Radiation Therapy Breast Surgery Lumpectomy: Left; Lymph node removal: Sentinel
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Aug 24, 2020 08:49PM Rosiesride wrote:

I have taken a 3 month break from anastrozole...was 1 year on tamoxifen, then 5 on anastrozole...new MO gave me new research trial info about 5 years on anastrozole will give significant protection for low risk cancer...my risk of osteoporosis is high so I will probably decide to go off of it after November...I am already osteopinia, taking fosomax... honestly, my side effects have not been bad and I took Claritin for the bone pain and it helped me. 5 years on anastrozole, I don't think about my cancer too much and going off of the meds will probably not cause me too much anxiety about recurrence. For those who have high anxiety about recurrence, then staying on the meds may be necessary🤷🏻♀️...I don't want to risk quality of life with broken bones. But, 🤷🏻♀️🤔🙄??? Have faith...Rosie

Dx 12/17/2013, ILC, Right, <1cm, Stage IIB, Grade 2, 3/11 nodes, ER+/PR+, HER2- Surgery 1/3/2014 Lumpectomy: Right; Lymph node removal: Right, Sentinel, Underarm/Axillary Chemotherapy 2/10/2014 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 6/19/2014 Breast, Lymph nodes Hormonal Therapy 8/29/2014 Arimidex (anastrozole)
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Aug 31, 2020 11:10AM dchouse wrote:

VioletKali - I quit the Femara last week after 14 months. If I read this right, you quit taking it over 5 years ago? And it sounds like you're doing well!

Dx 2/2019, IDC, Left, <1cm, Stage IA, Grade 2, 0/4 nodes, ER+/PR+, HER2- Hormonal Therapy Femara (letrozole) Radiation Therapy Breast Surgery Lumpectomy: Left; Lymph node removal: Sentinel
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Sep 4, 2020 05:38PM VioletKali wrote:

dchouse-

Correct, I quit taking an AI April of 2015, after giving it nearly 5 months. I was MISERABLE.

I do take an aspirin a day. I read some research regarding chemopreventative effects of it. I also use the Supplement DIM, an active compound found in cruciferous vegetables. I keep my BMI as low as I can, reasonably.

I do not see an oncologist. My family practice NP is willing to order any scans I need, such as a breast MRI when I was concerned about the textured implants I have. Made by Mentor, not recalled, but I had concerns. I am a Nurse and comfortable with my choices.


My tumor was 1.7cm, 10% of it was noted to be DCIS. No family history of cancer at all. Discontinued Chemo d/t uncontrollable side effects which caused hospitalizations, blood transfusions, and poor quality of life. I am doing well! Dx 6/19/2014, DCIS, Stage 0 Dx 6/19/2014, IDC, 1cm, Stage IA, Grade 3, 0/10 nodes, ER+/PR+, HER2+ Surgery 8/18/2014 Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Targeted Therapy 9/15/2014 Herceptin (trastuzumab) Chemotherapy 9/15/2014 Carboplatin (Paraplatin), Taxotere (docetaxel)
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Sep 16, 2020 04:02PM KCKCKT5 wrote:

Thinking of stopping also. Fracture my knee in March 2020 stopped for 6 months and need to start back up, but feel better not on it.

Looking for insight 4 years in and what the stats of benefit for making 4 years.


Thanks~

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Sep 17, 2020 06:54PM farmerlucy wrote:

I quit after four years. Lots of struggle in those four years. My onc said most recurrences happen inthe first two year. She wasn’t thrilled that I quit. I’ll be nine years out in Feb.

Dx at 51 after a preventive mx that wasn't. Oncotype dx 3. 3D tattoos from Vinnie! PTSD?? You are not alone! Surgery 2/21/2012 Prophylactic mastectomy; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Dx 2/24/2012, IDC, Right, 1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- (FISH) Surgery 3/11/2012 Lymph node removal: Sentinel Surgery 7/22/2012 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Hormonal Therapy 4/10/2013 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 4/14/2015 Prophylactic ovary removal
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Sep 18, 2020 12:06PM peridot180 wrote:

I am thinking of quitting myself after only a year on Tamoxifen. It might be causing my recurrent anal fissure issues and I cannot live like this anymore. It is no life. Nothing is helping me and I even got surgery for them. Things got even worse with Lupron. For now, I am taking a break from the Lupron to see if my fissure issue gets better. If not, then I will take a break from the Tamoxifen and see what happens. I know it is risky, but my quality of life has been terrible and I just can't live like this anymore.

I know it's a very personal decision for people and I respect everyone's decisions. It's really a tough call and everyone has a limit to what they can deal with.

Dx at 35. Dx 11/19/2018, IDC, Left, 2cm, Stage IIA, Grade 3, ER+/PR+, HER2+ (IHC) Targeted Therapy 12/17/2018 Herceptin (trastuzumab) Chemotherapy 12/18/2018 AC + T (Taxotere) Surgery 6/14/2019 Lumpectomy: Left Radiation Therapy 7/18/2019 Whole-breast: Breast Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Sep 18, 2020 12:11PM peridot180 wrote:

VioletKali - Were you on Tamoxifen and then switched to Lupron + AI? What were your side effects? I apologize if you answered this before.

Dx at 35. Dx 11/19/2018, IDC, Left, 2cm, Stage IIA, Grade 3, ER+/PR+, HER2+ (IHC) Targeted Therapy 12/17/2018 Herceptin (trastuzumab) Chemotherapy 12/18/2018 AC + T (Taxotere) Surgery 6/14/2019 Lumpectomy: Left Radiation Therapy 7/18/2019 Whole-breast: Breast Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Sep 18, 2020 01:33PM - edited Sep 18, 2020 06:53PM by moth

I'm a TNBC girl so not offering personal experience but chiming is because an onc I follow online was critiquing a recent study presented at ESMO (Opdam " avoid systemic overtreatment of post meno bc pts with low mammaprint scores" positing endocrine tx for only 3 years -but it's a small study & v little long data past 10 yrs) & I recently re-read the big 2017 study about ongoing 20+ yrs risk for ER+ (aka the long tail study) *

I've been thinking about Pinktober & 'survivor stories' & my sense of early stage ER+ pts is that many do not get enough information about the difference between recurrence scores, overall baseline risk (which at best returns to close to general population's ie 9-11%, or roughly 1 in 10 but often is considered to be around double of general population ie ~20%, because having had cancer once demonstrates your body has a weakness in identifying and killing of a mutation. Remember our cells make replication errors all the time & more as we age... the cells just self destruct or get killed by the immune system. Cancer is a failure of many control mechanisms. If you had a failure once, there's a real risk that it will fail again).

And furthermore, my general sense is that many people are told they're "cured". Some numbers are given to them but little context about what is personal risk, what is general population risk, & also what timelines are being considered. I'm even seeing an erosion of 5 year survival rates being a big topic among pts because it sort of seems *to some* that it's a given that they'll be around for 20+ years! They're not even thinking 5 years. Oncologists otoh often get excited about studies showing additional 3 months of life so their time scales are also subject to warping; I think MOs often aren't thinking years or forever, whereas patients are....

SO... the long tail study big kicker "The risk of distant recurrence was strongly correlated with the original TN status, with risks ranging from 10 to 41%, depending on TN status and tumor grade."

& let's just note here because even this sometimes gets lost for early stage pts: distant = metastatic = stage 4 = no cure. So if you're in a high risk category, and stop endocrine treatment, there are significant risk of a metastatic fatal recurrence at some point in the next 20 years. Obviously, the younger you are, the more of an issue this will be for you.

However, a 2019 update at SABC the authors presented data on pts diagnosed after 2000, & found that the recurrence rates are dropping. "The risk of DR at 20 years after diagnosis for women with node-negative ER+ early stage breast cancer, who discontinue endocrine therapy at 5 years is likely to be about a third lower now than in our previous report. However, long-term follow-up of patients diagnosed more recently is required to accurately characterize long-term recurrence risks." https://cancerres.aacrjournals.org/content/80/4_Su...

Anyway, my bottom line is that when making these decisions, it requires a lot of thinking about risks, absolute, relative, personal & population. I think this isn't a short MO appointment. This is a LONG appointment with questions and hopefully an MO who can explain and personalize all these numbers & do a crash course in stats if necessary.



*Pan H, Gray R, Braybrooke J, Davies C, Taylor C, McGale P, et al. 20-year risks of breast-Cancer recurrence after stopping endocrine therapy at 5 years. N Engl J Med. 2017;377:1836-46. (clickable link to free article in 1st para above)

Seriously???? “Sometimes the future changes quickly and completely and we’re left with only the choice of what to do next." nevertellmetheodds2017.tumblr.... Dx 12/2017, IDC, Left, 1cm, Stage IA, Grade 3, 0/5 nodes, ER-/PR-, HER2- (IHC) Surgery 12/11/2017 Lumpectomy: Left; Lymph node removal: Sentinel Chemotherapy 2/13/2018 AC + T (Taxol) Radiation Therapy 8/12/2018 Whole-breast: Breast Dx 2/2020, IDC, Stage IV, metastasized to liver/lungs, Grade 3, ER-/PR-, HER2- Chemotherapy 3/17/2020 Taxol (paclitaxel) Immunotherapy 3/18/2020 Tecentriq (atezolizumab)
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Sep 18, 2020 03:28PM flashlight wrote:

Hi moth, Thank you for your post. I know for me it was never really explained and at the beginning I was so overwhelmed. I changed my MO and just learned I was PR- and my diagnoses wasn't explained in full. I am glad I changed doctors.

Dx 11/15/2018, IDC, Left, 1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR-, HER2- Dx DCIS, Left, <1cm, Stage 0, Grade 1, 0/1 nodes Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy Surgery Lumpectomy: Left
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Sep 19, 2020 11:42AM erin_t wrote:

Hi everyone,

I'm glad this post has so many replies.

Just giving a quick update. I'm about 70 days since my last lupron shot. A lot of bad stuff happened in those days though, including psych hospitalization for depression. I'm feeling better now but unfortunately now we don't know if it's because I stopped the lupron/femara or because they finally got my depression meds right. Probably the latter. It can take a very long time to get lupron out of your system. I still haven't gotten my period.

I don't know what to do or when to do it.

I have an MO appointment in 10 days where he will give me tamoxifen. My plan is to wait until I get my period, so I know my estrogen levels are back and we can assess my mood then. Right now I'm willing to give the tamoxifen a try. But I want to stabilize first.


Dx 11/13/2018, IDC, Right, 2cm, Stage IIB, Grade 2, 14/2 nodes, ER+/PR-, HER2- (FISH) Surgery 12/9/2018 Lumpectomy: Right Chemotherapy 1/23/2019 AC + T (Taxol) Hormonal Therapy 3/20/2019 Femara (letrozole) Surgery 7/18/2019 Lymph node removal: Underarm/Axillary Radiation Therapy 8/13/2019 Whole-breast: Breast, Lymph nodes
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Sep 19, 2020 11:59AM - edited Sep 19, 2020 12:51PM by moth

hi erin, glad to hear you got the mental health help you needed and have stabilized. I hope your team continues to support you and get you on the best possible combo of treatment personalized for you

Hugs

Seriously???? “Sometimes the future changes quickly and completely and we’re left with only the choice of what to do next." nevertellmetheodds2017.tumblr.... Dx 12/2017, IDC, Left, 1cm, Stage IA, Grade 3, 0/5 nodes, ER-/PR-, HER2- (IHC) Surgery 12/11/2017 Lumpectomy: Left; Lymph node removal: Sentinel Chemotherapy 2/13/2018 AC + T (Taxol) Radiation Therapy 8/12/2018 Whole-breast: Breast Dx 2/2020, IDC, Stage IV, metastasized to liver/lungs, Grade 3, ER-/PR-, HER2- Chemotherapy 3/17/2020 Taxol (paclitaxel) Immunotherapy 3/18/2020 Tecentriq (atezolizumab)
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Sep 19, 2020 12:23PM erin_t wrote:

thank you moth :) and also thank you for your long, informative post above.

Dx 11/13/2018, IDC, Right, 2cm, Stage IIB, Grade 2, 14/2 nodes, ER+/PR-, HER2- (FISH) Surgery 12/9/2018 Lumpectomy: Right Chemotherapy 1/23/2019 AC + T (Taxol) Hormonal Therapy 3/20/2019 Femara (letrozole) Surgery 7/18/2019 Lymph node removal: Underarm/Axillary Radiation Therapy 8/13/2019 Whole-breast: Breast, Lymph nodes
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Sep 19, 2020 02:14PM JRNJ wrote:

erin_t: I think it was the Lupron. My last monthly shot was July 20. I was on Lupron and Aromosin. I was going completely insane and was nonfunctional. I had agitation, headaches every day, insomnia. I couldn't make a meal for my family. I switched to Arimidex during the last few weeks Lupron was still active. I had my ovaries out on 8/25. Now I am back on Arimidex only. I feel much better from the neck up. No more headaches, minor agitation. Still some insomnia, but sleeping much better. Main issue now is pain throughout my body, especially hands, arms and feet. I'm trying celebrex and a bunch of supplements, but not working much. And I take Lunesta for sleep. I heard Tamoxifen is more easily tolertated and souncs like a good choice for you. I'm afraid to switch because there have been studies that show it is not always effective for ILC.


Pleomorphic Multifocal, Extra nodal Extension, Lymphovascular Invasion. TEs removed due to infection Dx 8/15/2019, LCIS, Right, 6cm+, Grade 3, ER+/PR+, HER2- Dx 8/15/2019, ILC, Right, 2cm, Grade 3, 2/5 nodes, ER+/PR+, HER2- Surgery 9/23/2019 Lymph node removal: Sentinel; Mastectomy: Right; Prophylactic mastectomy: Left; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy 12/1/2019 CMF Radiation Therapy 3/29/2020 Whole-breast: Breast, Lymph nodes, Chest wall Hormonal Therapy 6/3/2020 Aromasin (exemestane) Hormonal Therapy 8/5/2020 Arimidex (anastrozole) Surgery 8/24/2020 Prophylactic ovary removal

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