Anyone on Tamoxifen after double mastectomy and clean nodes??

Marcy, not a double, but rt side and tamoxifen x 4 years. Just got diagnosed with IDC on the mastectomy side.



I didn't take my tamoxifen as regularly as I should have. I wish I had! Please work out the side effects with your doctor.

Marcy... Did your physician have the Oncotype DX test done on your tumor specimen? If so, the Oncotype DX score would give you an idea in a percentage of how much Tamoxifen would reduce your chance of future distant recurrence. For some women, the benefit in absolute terms is small, while for others, it is large. Nonetheless, if you are getting side effects, you need to discuss it with your physician. If your risk of recurrence is moderate, you might wish to discuss ovarian suppression with your doctor and perhaps switch to an aromatase inhibitor instead of taking the Tamoxifen. Keep in mind, there are other risks and side effects associated with ovarian suppression and AI's.



Speak to your medical oncologist and try to first nail down how much benefit you will derive from taking Tamoxifen before making any further decisions. Remember you have many choices and none are written in stone...

Count me in re: stage 1, clean nodes, BMX, and taking tamoxifen. Also my onco score was quite low so Tamoxifen makes about a 2% difference. I am very happy to be taking it. I had a rough start, stopped for a year, then tried again, this time with few side effects. The worst part about not taking it was the emotional drain of knowing there was more I could be doing to prevent recurrence. 

I'm taking Effexor as well. I have very vivid dreams, but generally not scary. I don't mind them at all. I do know now that I dream in color!

Yes on the crazy dreams! They have mostly stopped too. My Onco score was 17.

Carolpr56 - May I ask how you discovered the new lump? Also how did they do the second SNB? Crossing my fingers that the node is crystal clear! BC sucks!

Thanks niki! All I can say is, take that med every day, lol! Then if you get a recurrence like me, you'll know you did everything : (   Most annoying  side effect I had was the vaginal discharge - like, pube boogers, sorry gals! but really....ick.

Farmer Lucy, well, I feel around the implant fairly frequently because quite honestly, it feels weird lying down. Wrinkly and squishy. So I felt this marble-sized lump in the side of my implant, sideways to my armpit. I called my onco the minute the office opened and within 8 days that sucker was out of there. Invasive ductal carcinoma. I guess left over in the tissues from my mastectomy? Took 4 years to go from carcinoma to IDC? I don't know. At any rate, we were all expecting a fat necrosis or something, so that's why we had to go back in for nodes. The surgeon didn't expect to be able to get a sentinel node after having "messed around in there" (lol) but by God's grace he did. So now at least I'm at less risk for LE!

Lucy, you asked "second SNB" - I didn't have a SNB the first time 'round, as I had multi-focal DCIS. They took 5 nodes to look at, but no SN to look for, I guess.

Thanks, farmerlucy - I'll check that out.

tamoxifen reduces reaccurance in both the breasts and distant sites, so even though we dont have any breasts (and yes some tissue does remain) the tamox is there to hopefully deal with any micro mets in our system.  That said, if your chance of distant mets is very very low (due to size of tumor and oncotype score) then the benefits may not outweigh the risks for you.  Everyones situation is different.  % of positivity for estrogen plays a role aswell - I was 95% er positive

Yes, rozem. I posted before I saw yours added. Exactly!

I'm late to this conversation but have been reconsidering my decision to take tamoxifen. In 2007 had dcis, stage 1 and lobular, stage 0 in my left breast. Did a lumpectomy, it wasn't in lymph nodes, and then radiation. Dr's rec'd tamoxifen but after careful consideration, research, talking to a few people, I decided against taking it. In 2011 I had breast cancer in my right (Invasive in ductal carcinoma

2 cm

Stage IIa (lymph node)

Grade: 1

Er &pr positive and her2 -)



Dr said it was new, not a reoccurrence. I opted to have a double mx and this time went on Tamoxifen even though my oncotype test was very low (5). Now, two years later, I am considering going off tamoxifen for several reasons one of which is the impact it is having on my blood sugar. I eat a diet that is 95% clean, no sugar except for fruit exercise 6-7 days a week( strength training and cardio)...in other words, all controllable factors I'm doing all the right things...even reducing my coffe intake to 1-2 cups a day which is HUGE for me! I have and continue to discuss with my dr, but am just curious of any one elses experience?

Thx for sharing farmerlucydaisy! Have you experienced many se?

Hi ladies, I have been on Tamoxifen for 4.5 years now, and have an apt with my oncologist to talk about extending to 10 years. In 2008 was Dx with grade 3 IDC with clean nodes. I have had a double Mx and 4 rounds of AC chemo. I take my pill every night and can count on one hand the nights I didn't take it, like in the hospital for surgery or sick with the flu. I do have side effects that are very annoying but at 38 (33 at diagnosis) I know that I would not be able to forgive myself for not taking it and then getting a recurrence. I don't think I could look my kids in the eyes if I didn't know for sure I did everything I could (maybe I would feel differently if my SE's were unbearable). I agree with the lady that said if you take it and get a recurrence anyway, there is a slight comfort in knowing you did what you could.

Hi Everyone,

I'm in the same boat! Double mastectomy, no chem, no rad, but on Tamoxifen and Effexor. 

I'm 31. I only had it on the right side, however didn't want to chance it on the left. 

Did anyone experience an inflamed foot after six months of taking tamoxifen? I have been 

so drained and weak. It's not like me at all. This foot pain is exactly like gout, but it's not. 

The tests came back and said it's just inflamed. My docs and ocon said it wasn't a side effect,

but I think differently. I never hit it or hurt it. Has anyone gone experienced tiredness/weakness

and foot pain?

Thanks for your help. 

Thanks for your candid comments, katysquared.... I am in the same zone now but have just been prescribed my 10 years of Tamoxifen. I asked for three weeks to think things over. (I have learned SO much from this site!) I thought after a BMX and negative SNB and a 13 on the Oncotype test for a 9mm IDC that my oncologist would just say Congratulations! but now am facing either induced menopause with some other drug or this..... I just read about DIM on another forum..... Diindolylmethane.... a powerful component found in cruciferous vegetables that balances estrogen metabolism. I think I'm going to ask for my oncologist to prescribe the lowest dose of Tamoxifen and try this..... I looked it upon WebMD. No side effects.....I'm 52 pre-menapausal and already have hypothyroidism along with restless leg syndrome so the side effects of Tamoxifen do not appeal to me. She says -"Just try and see.... Everyone is different." but I asked her to run a gauntlet of blood work to get more info first. eleven vials later, I'll see where I stand. Anyway, GREAT POSTS EVERYONE. I'm new and don't know how to update diagnosis and all but am awaiting implants in August and LAVENDER OIL is helping me get through the scar tissue stage.....Thanks again!