Tamoxifen after lumpectomy and rads: yes or no?

Sloper · January 2013

I am having a lot of trouble deciding whether to take Tamoxifen and am hoping others out there can offer advice....

Here's my situation:I had a lumpectomy earlier this year for a small amount of DCIS -- the size was never determined precisely, as most of the tumor was removed during the initial biopsy, and only a minute focus (less than 1 mm) was found during surgery. The initial surgical pathology report from the biopsy showed that the DCIS was ER/PR+, high grade, with necrosis and solid and cribiform patterns. The pathology report from the subsequent surgery classified the small remaining amount of DCIS as intermediate grade. I was 48 years old when I was diagnosed, and am pre-menopausal.

Based on all of the above, I decided to go ahead with radiation, having been convinced that this was my best option for reducing the risk of recurrence. My final boost is this Monday, so the time has come to decide whether to go ahead with Tamoxifen or not. I have never seen a medical oncologist, but have discussed Tamoxifen with both my breast surgeon and my radiation oncologist, both of whom basically told me that it was "up to me" - that taking Tamoxifen could further reduce my (now low) risk of recurrence by perhaps one or two percent, but that Tamoxifen has not been shown to affect long-term survival, and that it's difficult to really determine whether the risks of taking the drug outweigh the benefit, at least in my case. My radiation oncologist offered to refer me to a medical oncologist, if I wanted to hear another opinion - but I got the strong sense from him and the BS that oncologists aren't really "interested" in treating patients with DCIS.

I've tried to do some reading on my own but am having a really hard time deciding what to do. Has anyone else been in this situation? Would love to hear how others have handled it.

cinnamonsmiles · January 2013

First of all, I am sorry you got cancer in the first place and have to go through all of this.

Second, has your oncologist explained what your cancer type means? The total amount of cancer present, and what the er/pr status,high grade, necrosis,and solid/cribiform means? If not, you need to know (I am not sure if it was explained,sometimes I read about people who state those things and don't know the meanings. Please don't be offended by me asking.)

I am sure that your oncologist gave you statistics of reoccurence if you take or not (if the dr. hasn't, then have it explained) and the risks of taking the drug, itself.

I had different issues to deal with. I armed myself with information regarding my cancer specifics, and treatment choices as well as their side effects (a couple I was fuzzy on, and didn't have these boards at the time to help me). But I didn't drive myself crazy when I read up on the info. I didn't project into making myself full of anxiety.My decision was easy, but not everyone can make a decision like that. The answer just came to me.

Do you want to be more agressive now? Is the tamoxifen compatible with any health issues you may have going on? How clean were your margins? Learn, breathe, decided. Perhaps get another opinion from another oncologist?

As for the fact that your surgeon saying that oncologists aren't really interestedin treating patients with DCIS? Poppycock. You may have the jerk here and there....BUT a radiation oncologist specializes in radiation they know about hormone therapy drugs, but obviously it isn't their speciality. A medical oncologist can give you much more insight than it sounds like your surgeon and rads dr are giving you. Prescribing tamoxifen for hormone positive DCIS IS part of the medical oncologist's job description and I think that discouraging you from seeing a medical oncologist is a terrible thing to do. Perhaps the medical oncologist in their practice has that view about DCIS, if the onc does, then find one that DOES value teaching and treating patients with DCIS. Doctors should provide information and help guide us to a decision. It sounds like neither the rads onc nor the surgeon are doing you justice in regards to the tamoxifen. SEE THE MEDICAL ONCOLOGIST THAT SEES DCIS AS A TRUE CANCER AND GET THEIR OPINION. If the med onc is a jerk about it, then seek out another. Remember...they work for you(us). You deserve the best treatment.

Good luck with your decisions. I wish you the best and keep us posted!!!

Edited to add: Please check out posts on here within the DCIS section from a lady named Beesie. She has really good information and knows her stuff. She has a post on here called something like A layperson's Guide to DCIS, it's pinned to the top of the DCIS forum. Also check out the information that cancer.org,breastcancer.org, and the National Institute of Cancer (http://www.cancer.gov/cancertopics/types/breast) and look up info on DCIS treatments.

Annette47 · January 2013

I was in a similar position with a smal amount of DCIS (although I had a microinvasion of IDC as well) mostly removed by biopsy. Had lumpectomy and now doing rads. I met with the medical oncologist who said that the benefit of Tamoxifen would be to slightly reduce the risk of recurrence (which after lump with good margins and rads should be pretty low even with the microinvasion), but more importantly would reduce the risk of a new primary in the other breast, which would be continuing to increase over the next 40 or so years. His take on it was that it isn't as essential as it would be with a more invasive cancer, but that it would at least be worth giving it a try to see if the side effects are manageable. If the side effects were bad (which he said was unlikely in his experience with a "younger" pre-menopausal woman) he said I could always quit it then. In other words, it would provide enough benefit to be worth a try, but possibly not enough to be worth putting up with severe side effects.

He was actually much more interested in talking to me about genetic testing as I do have a family history and am Jewish (both risk factors), so I'll be doing that in a couple months once I am done with rads.

ej01 · January 2013

My situation was very similar to yours. I had a very small grade 3 DCIS, all of which was removed through the initial needle biopsy. I was 49 and pre-meno. I struggled with the tamoxofin decision, and finally decided against it. My BS encouraged me to take it as protection for my healthy breast, but i declined. Taking a medicine that messes with your hormones in such a big way to protect a breast that does not have cancer and never has did not seem to be in line with my approach to life. After all, survival risk is not really impacted. If I get a reoccurance, there is a good chance that I will take Tamox next time though. I read the book by Dr. Lee "What your doctor may not tell you about breast cancer." and that book helped to reinforce to me that I made the right decision. I have also made some healthy lifestyle changes (diet, exercise, chemicals, etc) that should help keep me healthy in the long run, (although there are no pharmicutical-funded studies to prove these changes can help reduce BC risk.)

Everyone is different and has a different approach to things. What was right for me may not be right for you. Good luck with your decision.

CTMOM1234 · January 2013

This is such a personal decision, and you need to consider all of the pros and cons for your particulars, as well as your general feelings about risk and meds. I opted out 3 years ago and continue to be happy and content with my decision. I am still pre-menopausal and feel similarly to the previous poster. Wishing you good inner peace with your decision, it is yours to make.

SJW1 · January 2013

Your surgeon and radiation oncologist are correct. The amount of risk reduction a DCIS patient gets from tamoxifen is at best two percent. Knowing that, only you can decide whether the benefits outweigh the risks of tamoxifen for you.

In 2007 after being treated for intermediate grade DCiS with a lumpectomy, I opted to omit both radiation and tamoxifen because my risk was only 4 percent with no further treatment. Everyone is different however. Each person must decide what is right for them.

Best,

Sandie

Julie--MA · January 2013

I have a situation very similar to yours (exact same age too), and I did see a medical oncologist who was great (so don't be certain they will be dismissive of DCIS).

Something that she explained that might be a helpful clarification: Yes, the survivial rate is not longer on Tamoxifen, but the rate of recurrence and the rate of new cancer are definitely smaller. In other words, there are enough treatments out there that if you get breast cancer again, you will likely survive as long as you would anyway, but I decided I wanted to reduce my risks of getting it again. Four surgeries and rads was enough once! :-)

Sloper · January 2013

Just want to say thanks to everyone for the helpful comments and suggestions. I decided to ask for a referral to a medical oncologist (one who is not dismissive of patients with DCIS) - I am hoping he or she can help me make a more informed decision....

Anyhow, rads are over and I didn't fare too badly -- kept working FT all the way through and didn't have terrible fatigue. Skin irritation was manageable too, though I understand that it can still get worse before it gets better. Feels like a big chapter in my life has just closed, except for the tamoxifen decision that is still hanging over my head. This board has been a great source of info and comfort all the way through, so thanks again, ladies!

ballet12 · February 2013

I am also struggling with the Tamox/AI decision. I am waiting to speak with the surgeon (will be a couple of months hence). The rad onc said that I should be considering my family history of breast ca, but truthfully, given that I'm brca negative and my mother had it at age 61, I'm just not sure that my risk is so high for a second primary in the other breast. I am not worried about the treated breast. I had very wide margins and whole breast rads. The med onc is happy to go either way. So confusing.

Lisa1637 · February 2013

I'm so glad to have found this topic. I had my surgery a week ago today and will be seeing the med. onc. on Monday. The cancer dx didn't make me fear dying. For me, the terror has been in confronting some upsetting life circumstances, and I am so sad. Being single with no kids, I am angry and even bitter about having to take tamoxifen thus shutting the door on having (biological) children. At 43 I am just not ready for that.

Yet, I want to do the right thing.

I would appreciate your thoughts....

jmb5 · February 2013

One thing that was misleading at first for me is when my oncologist said it would reduce my risk or recurrence by about 50%. Sounds like a big number, until I asked what my risk of recurrence was. He said about 13%, so if I take the Tamoxifin, the risk is reduced to about 7%. I decided it wasn't worth it, and I declined. My oncologist, who I really like, was fine with it. Looking back, I wish I would have spent more time considering rads. Now that it's all over, I worry about the long term damage the radiation did. Everytime I get one of the severely painful cramps in my breast, the ones that take my breath away, I worry.

Tamoxifen after lumpectomy and rads: yes or no?

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