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All TopicsForum: Hormonal Therapy - Before, During and After → Topic: Tamoxifen - Do or Don't?

Topic: Tamoxifen - Do or Don't?

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: Feb 13, 2018 03:59AM - edited Feb 13, 2018 04:12AM by KellsO

KellsO wrote:

It's killing me how much side effects are in Tamoxifen. I had a clean bill of health for the last six years before being diagnosed with DCIS, and i'm reading the side effects with tamoxifen can cause a myriad of problems! Osteoporosis, insomnia,mood swings, insomnia, heart disease???? WTH??? So, I think about what was pitched to me:

Surgery (done!), radiation therapy (3-4 weeks) and tamoxifen. Ok. Let me decide. *Does research. Joins BreastCancer.org Community*

What I want - Radiation therapy, no tamoxifen with carrying on a very very healthy lifestyle and being vigilant on breast exams and mammograms which can be managed and live with the risk of 40% recurrence.

OR

Do, what I DON'T WANT - Risk developing heart disease (join the cardiology community), osteoporosis ( join the orthopedic club), risks of marriage and relationships (join family therapy and support groups) and take a chance in letting it affect parenting (um sorry I have two kids with special needs 22 years old -non verbal with refractory epilepsy and 8 year old (with autism).Consider the insomnia and the how much it can cause major mental health issues (thinking, memory and mood)-- really that's a lot of clubs to join!! Ok, I'll think about it.

I do not know which direction to shift considering this was early detection. I do not trust pharmaceutical companies like I did in the past, the person that has to deal with me and these changes and side effects are my husband and children and it it not fair to them. I will live with the 40% odds of recurrence with just radiation and gamble with tamoxifen ( Oh, did I mention possible weight gain joins Lindora or weight watchers)!!!!

What would you do?

AND

How many patients in this community tried Tamoxifen and suffered the side effects and stopped it all together?

Share anything about this thread.


Thank you

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Posts 1 - 14 (14 total)

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Feb 13, 2018 05:56AM Sjacobs146 wrote:

I had absolutely no side effects from Tamoxifen. Some do have side effects and stop. It's worth trying to see you you react. I don't know where you got your research from, but Osteoporosis is not a side effect of Tamoxifen. I switched to Arimidex about a year ago now that I am post menopausal. Bone loss is a side effect of that and my onc is monitoring my bone density. I have several SEs from Arimidex including joint pain. They're bearable for me, but I am thinking of switching back to Tamoxifen even though It offers less protection.

My point is, everyone reacts differently, give it a try before ruling it out. You can always stop

Dx 8/26/2014, IDC, Right, 1cm, Stage IIA, Grade 2, 1/3 nodes, ER+/PR+, HER2- Surgery 9/23/2014 Lumpectomy: Right; Lymph node removal: Right, Sentinel Chemotherapy 10/24/2014 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 1/26/2015 Breast Hormonal Therapy 4/17/2015 Arimidex (anastrozole), Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Feb 13, 2018 09:35AM ksusan wrote:

Tamoxifen actually improves bone strength. You may be reading about aromatase inhibitors, which have bone weakening as a potential side effect.

Mutant uprising quashed. Dx 1/2015, IDC, Right, Stage IIA, 1/1 nodes, ER+/PR+, HER2- Dx 1/2015, DCIS, Left, Stage 0, Grade 3, 0/2 nodes Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery Lymph node removal: Sentinel; Mastectomy: Left, Right Radiation Therapy Whole-breast Chemotherapy Cytoxan (cyclophosphamide), Taxotere (docetaxel)
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Feb 13, 2018 09:42AM gb2115 wrote:

I think tamoxifen actually improves your bone density, am I right? I don't know, after being on tamoxifen for about a year now, it's not all that evil. I know I've read of women who've had a rough time, but I do believe that's the exception, not the rule. There are soooo many of us out there that do fine on it. If you look at the side effect list on any drug, you will see completely scary things. It's a risk any time you take any pharmaceutical, including Tylenol. There is risk in anything you do. However, it's a personal choice whether or not to take the treatment that's recommended. I chose it because I'd rather wade through side effects (which have not been all that bad) rather than have my cancer come back. My MO said if it comes back it will most likely be stage 4 because there's a higher risk of that than of local recurrence. So being vigilant about mammograms, etc, while great and necessary won't prevent the worst (stage 4) from happening. And as I've shared on other threads, I'm watching a close family member suffer from stage 4 many many many years after her original diagnosis. My current life goal right now it to not have that happen to me. So, ---for me--- I'm extremely grateful that tamoxifen exists and gives me something to fight that with daily.

I don't know if because you have DCIS if the risk levels are different? I honestly don't know much about it. I know with my IDC and the fact that I was 100% estrogen receptor positive, tamoxifen was a no-brainer. It never occurred to me to not take it.

So...what it's been doing---I get hot flashes in the middle of my weird 7 week menstrual cycle. They go away the rest of the time. I've had some dry mouth to contend with--but I kind of already had that, so it's a little more pronounced. I try to drink more water and use Biotene. And some "burning" right before my period---that's kind of new. Other than that...I've also lost weight due to a decreased appetite. None of this is a deal breaker to me. It will be interesting to see if more side effects build over time. I will figure it out as it comes. :-)

I don't know if this is helpful to you at all. I just know it's easy to look at a list of side effects and expect the worst, when most of the time that stuff doesn't happen.

Dx IDC in October 2016, stage 2A, 1.2 cm ER/PR+ Her2-, Grade 2, 1/3 nodes. Mammaprint low risk luminal A, Lumpectomy + radiation + tamoxifen.
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Feb 13, 2018 10:46AM wolfie wrote:

I am at the decision making time for Tamoxifen too...3.5mm of IDC found in 2cm of DCIS (original diagnosis). I had lumpectomy and am on #9 of 20 radiation treatments today. My oncologist has given me the option to go on Tamoxifen but has said that if he were me, he would be reluctant to go on it. I am at about a 4% recurrence rate and with Tamoxifen, it will only drop it about another 1%...about the same percentage of risk of endometrial cancer, etc. From the Tamoxifen. He feels that the risk may not outweigh the benefit for me...of course he is not saying ‘not’ to take it but I am very leery about it. I know that any drop in recurrence rates is good but at what cost? Pretty sure we won’t know about the things like blood clots, etc. until they happen? I know, very small risk but a risk of about 1%...just like the 1% benefit for “me”. Ugh, I hate these decisions

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Feb 13, 2018 11:00AM Shenanigans08 wrote:

I'm with you KellsO, I'm couple weeks out from my reconstruction surgery and my oncologist wanted me to start it when I'm feeling the best I've felt in months. I decided no, not now. Maybe take a closer look after I'm healing well and feeling good. I agree, all I've heard is horror stories from women that have taken it. I'm already on Herceptin every three weeks and technically I'm "cancer free" as of Nov 2017 since I have a biLat mastectomy. I want to be proactive in fighting recurrences but how much is enough? My oncologist keeps say its a make of "should do" vs. "could do". To be honest I'm not sure what perspective I should have right now. All I can think of is surgery, recovery and then the next surgery...other treatments are secondary at this point. Ugh!

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Feb 13, 2018 11:05AM KellsO wrote:

Right,I'm hearing support from other doctors about tamoxifen and some who aren't prescribing it as an option. My DCIS is from early detection, my doctors says I can always stop taking it and risk the 40% recurrence or I can take it and stop. I know I should give it try, I'm 43 and I have two boys to live for and a husband who puts up with my attitude, I can't imagine being worse than I am. I have to stay grounded and trust the process.


*I am sorry you're going through this. This community discussion board has been very helpful. Especially the “try it" and “stop taking it if side effects get worse."

#Fightlikeagirl



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Feb 13, 2018 11:08AM wallycat wrote:

Tamoxifen can cause uterine issues (rare but increases risk) but it actually prevents osteoporosis and acts like estrogen in the bone.


Dx 4/07 1 month before turning 50; ILC 1.8cm, ER+/PR+, HER2 neg., Stage 1, Grade 2, 0/5 nodes. Onco score 20, Bilateral Mast., tamoxifen 3-1/2 years, arimidex-completed 4/20/2012
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Feb 13, 2018 11:09AM KellsO wrote:

Focus on recovery for now. The worst part about the digital agenis reading the feed from other patients. Second opinion is good too but if it’s estrogen induced the protocol is pretty much the same (radiation tamoxifen) and life for several years. I always say we don’t know unless we try. My 23 year old son had refractory epilepsy for 13 years until he needed brain surgery, he was on 5 medications at the time and a lot of those meds contributed to his condition. But this is one medication and changing my lifestyle is going to be something I have to adjust to.


We are here to support you. I’m journaling my condition as I go along.

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Feb 13, 2018 11:19AM - edited Feb 13, 2018 12:44PM by Lula73

40% recurrence rate? You know that without a family history, you had only a 12% chance of developing BC in your lifetime, right? 12% already hit square between the eyes. 40% is MUCH higher risk, is it one you really want to take? Is it a risk you really want to take jus because of a list of possible side effects that not everyone gets and you haven't even tried it to see if you get any SEs? When it recurs, it's usually much worse the second time around. Often recurs elsewhere in the body (liver, bones, lungs, etc). This means you move to Stage IV overnight. It also means more intense chemo, perhaps chemo for the rest of your life to keep the tumors small, surgery (that lumpectomy you had now is often a mastectomy recommendation), and rads may not even be an option on the table anymore. Is Tamoxifen or any of the AIs going to guarantee no recurrence? No, but it gives you far greater odds than not taking them. Far greater odds of being here and able bodied to be able to take care of those that need you. These are the things I remind myself of when I take my AI every night. Yes, I have side effects but upping my odds against recurrence far outweighs the joint pain and hot flashes. Just my $0.02.

-Lula Dx 1/2017, DCIS/IDC, Right, 1cm, Stage IA, Grade 1, 0/2 nodes, ER+/PR+, HER2- Surgery 2/14/2017 Lymph node removal: Sentinel; Mastectomy: Left, Right; Prophylactic ovary removal; Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Hormonal Therapy 3/3/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 11/1/2017 Prophylactic ovary removal
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Feb 16, 2018 06:37PM Kalisa2003 wrote:

Hello

This is to give you all the options out there. I started tamoxifen in November. The day after starting tamoxifen I went to the ER. Let's jump to now. After complaint about shortness of breath for 2 months I was finally diagnosed with 5 clots in my lungs. My AST=187 and my ALT=410. That all occurred 2 months on tamoxifen. I went to the onc. and asked him to take me off of tamoxifen because I was feeling so bad and he did. Two days later I was going to work and couldn't breathe. Called ambulance and found out about the clots. My ast and alt have gone down significantly since stopping the tamoxifen. But now I think that the short time I was on tamoxifen have damaged my liver. Seeing a gastroenterologist and need a CT of my liver because the saw something on a sonogram.

So please know that tamoxifen has a lot of side effects. Weigh your options. I refuse to take tamoxifen again. Will do mammograms with ultrasound every 6 months.

Best wishes to you in your choices.

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Feb 16, 2018 06:44PM Kalisa2003 wrote:

Hello

I was that 1% that got a blood clot after two months on tamoxifen. Clots can happen. I had 5 clots in my lungs. Thankfully, I made it to the ER in time.

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Feb 16, 2018 07:03PM ksusan wrote:

I've been on Tamoxifen 2.5 years with only manageable side effects, some of which have decreased over time.

Mutant uprising quashed. Dx 1/2015, IDC, Right, Stage IIA, 1/1 nodes, ER+/PR+, HER2- Dx 1/2015, DCIS, Left, Stage 0, Grade 3, 0/2 nodes Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery Lymph node removal: Sentinel; Mastectomy: Left, Right Radiation Therapy Whole-breast Chemotherapy Cytoxan (cyclophosphamide), Taxotere (docetaxel)
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Feb 16, 2018 07:22PM Polly413 wrote:

KellsO, I am sorry you are facing these hard decisions. I am a little confused why you have a 40% chance of recurrence with DCIS. Did I understand that right? When I had DCIS I was told my recurrence risk was 5%. I was told treatment would reduce my risk 50% but that was relative risk and was really equal to just 2.5% absolute reduction in risk. Stated differently with surgery only I had a 95% chance of no recurrence and with additional treatment that chance increased 2.5% to 97.5%.

Anyway I wanted to tell you my experience. I had a 1 mm lesion in my left side in 2000 when I was 55. The lesion was so small it could not be biopsied so the surgeon just did a lumpectomy not knowing if it was cancer or not. She got good margins. Pathology came back DCIS grade 2. Could not be tested for hormone reception because of the small size. Tumor board recommended radiation and tamoxifen. I refused both. Its been 18 years now and I have not had a recurrence locally or as mets. No one has kept up with my history and so I am not included in the statistics. I think there must be a lot of women who have refused radiation and/or tamox but have not been part of the record. I believe but cannot prove that my cancer was caused by 10 years of hormone therapy which ended when I was diagnosed.

I am on this board in 2018 because I developed IDC on my right side which was diagnosed last Spring. It is Stage IIA. This is not considered a recurrence or related to the earlier DCIS. I have had genetic testing which came back that I have no genetic risk. ( I guess you could argue that the 5 yrs of Tamox starting in 2000 would have prevented this second cancer but I am dubious of that and do not regret refusing tamox). This go round I have had a lumpectomy and chemo but have declined radiation as it would not increase survival odds (only help maybe to reduce local recurrence risk.) My MO is comfortable with this decision. On the other hand, this time I will take a hormone inhibitor beginning this week. It will be an AL not tamoxifen. I am hoping for minimal side effects and will continue unless the AL significantly decreases my quality of life. I am older than you and don't have many productive years left no matter how long I live so I am going to weigh that factor against continuing with the AL if my side effects are bad. On reason I am taking the AL is that I have had 2 medical oncologist and both have said that, because my IDC is highly ER/PR receptive, a hormone inhibitor is more important to my survival that either the chemo I underwent or the radiation I declined.

These decisions are so difficult and very personal. Do what you think is best and don't look back. Best wishes to you.

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Feb 16, 2018 08:56PM edwards750 wrote:

I had very few side effects with Tamoxifen. As others have said it does not attack the bones- Arimidex does. I have osteoporosis so taking Arimidex initially was a mistake. My MO should have known better.

I did have a blood clot when I was 16 but my MO said it wasn’t a concern because I had had 2 children.

It is a personal decision and you do need to do what’s best for you. I took it because I considered it an additional insurance policy. I have an 8% chance of recurrence. I’ll be 7 years out in August.

All meds and treatments come with risks but quality of life is important too.

Diane


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