Pregnancy BEFORE Tamoxifen

heidil00 · December 2017

Hi ladies-

I didn't see a Fertility forum, so my apologies if I'm posting in the wrong area.

I live in Denver, Colorado and had been going through IVF treatments to get pregnant with my second kiddo. I am 45yr so using both donor egg and sperm this time around so this isn't about my fertility. I found my lump while working in bed one evening, five days away from getting pregnant, AFTER having clear mammo three weeks prior! I also had clear mammograms every year since 2012 (requirement of my IVF clinic).

Long story short- called Dr Mom first, she said it was nothing, dense breasts in family, no history of cancer. Waited a day then called my clinic to tell them what I found and- they put baby on hold until I got everything checked out -thank goodness or I'm sure this would be an entirely different conversation! Through a series of mammo/ultrasound/MRI and biopsies I was diagnosed with stage 1 invasive ductal cancer, estro/proges +, HER2 -, node -. I also took the genetic test and I am negative for BRCA, et al.

After many interviews and second opinions, I decided to do a double mastectomy and reconstruction vs lumpectomy and radiation. I had a great surgical team and an anesthesiologist that did a new series of blocks that had me off all narcotics two days after surgery. I am one month post-op and look/feel great!

I did get an OncotypeDX test and it came back at 19. My tumor was small, 1.7cm. I will refuse any radiation or chemo if suggested since Onco number is low enough to make me feel comfortable in doing so.

My question is this... I am meeting with two medical oncologists this week about treatment going forward, expecting the typical Tamoxifen suggestion.

My question is this... I understand the suggestion of Tamoxifen is to inhibit or block estrogen in my body. But what I don't understand is I am reading about women who take it for 2yr, 5 yrs and then go on to get pregnant- something that will raise the estrogen in their bodies, and therefore hypothetically, the risk. If I understand correctly, Tamoxifen doesn't kill estrogen receptors, so why not get pregnant before taking Tamoxifen since it seems the risk is the same, with just a 2/5 year difference.

There is no question of me taking Tamoxifen- I'm just questioning WHEN. What difference, if any, would it make if I decided to go into IVF right now vs in 9 months?

That is the question I am trying to get answered. I have the option of a surrogate- as expensive as that is- just trying to understand the logic. I am with the best fertility clinic in the world and they defer to my oncologist. My oncologist (the two I've been interviewing) don't have a lot of knowledge in the fertility world.

Any thoughts would be appreciated!

Icietla · December 2017

Hi Heidil00, and welcome to BCO. We are sorry about your illness but glad your treatment has been going well. Treatment decisions can be difficult. Pregnancy planning can make it all more difficult.

Tamoxifen does not work by reducing the estrogen in one's body. Here is a good brief explanation of how it works.

http://www.imaginis.com/breast-cancer-treatment/basic-information-on-tamoxifen-2#how-does-tamoxifen-work

The Recurrence Score in your OncotypeDx Report assumes five years adjuvant treatment with Tamoxifen. The report is only to aid in the decison of whether to have adjuvant Chemotherapy also. It has no bearing on recommendations for Radiation treatment.

http://www.oncotypeiq.com/en-US/breast-cancer/healthcare-professionals/oncotype-dx-breast-recurrence-score/interpreting-the-results

For a good idea of all the recurrence risk difference adjuvant Tamoxifen makes (to study populations of ER+ breast cancer women) over not having any endocrine treatment (before Tamoxifen was available to treat ER+ breast cancer patients), read the first paragraph here in the Challenges In Diagnosis And Management section.

http://ascopubs.org/doi/full/10.1200/JCO.2012.46.6599

heidil00 · December 2017

Thanks for the reply and information.

The first paragraph in the link you supplied as to do with postmenopausal woman, which I am not.

I do understand the Oncotype has to do with the likely effectiveness of chemo and potential reoccurrence which is why I listed it. I'm right on the border of low and intermediate risk. I do not however, have to do radiation per my radiation oncologist, thank goodness!

The question really is the pregnancy piece and if I could do it pre-Tamoxifen. It was originally a fertility drug which I think is ironic.

Regardless, I'm questioning the 'one size fits all' recommendations of most oncologists and interested to know anyone that has become pregnant prior to taking it.

I do have an appointment with an oncologist that specializes in cancer and pregnancy (pre/post) and cancer in February so will be interested to hear her opinion and will share once I do.

Michelle_in_cornland · December 2017

If you have the option of a surrogate, that is the direction that I would suggest. That way, your body does not produce any extra hormones to support the pregnancy. You can also use that time to work on stamina, fitness and stuff for the baby. Really enjoy that time of preparation, because you will have your hands full when the baby/babies come. I had a nanny for both kids, that did the first few months of night time feedings. You will not produce milk, so I would assume they will be formula fed? Depending on when you have the baby, teachers can be great nannies during the summer months.

ShetlandPony · December 2017

Heidi, I'd like to address your question about the logic of treatment. (I'm not a doctor but here is my input for you to discuss with your doctors as you see fit.) You had the tumor removed, but there is a chance that some cancer cells already escaped and traveled to some other place in your body via lymph or blood, even if your nodes were negative. So the systemic treatment, in this case Tamoxifen, is to try and kill any stray cells or undetected tumors. If you start this therapy a year late, that could give them time to grow and cause a recurrence aka metastasis. With an Oncotype of 19, I am guessing your risk for this type of recurrence would be about 10% in ten years with Tamoxifen, and 20% in ten years without Tamoxifen. (Ask your oncologist for his/her risk estimate for you personally.) How pregnancy might change that risk I do not know, and that will require expert input and research. Being premenopausal and the tumor appearing quickly (after a clear mammogram) would make me a little more nervous about delaying treatment. You might ask the oncologists and fertility specialist whether it is an option to do at least two years of Tamoxifen and then have a baby after that. Or of course go with a surrogate or adoption. I'm sorry stupid cancer is interfering with your plans.

Icietla · December 2017

"On the other hand, in premenopausal patients, the same metaanalysis show that the use of adjuvant tamoxifen produces benefits in disease- free survival and overall survival very similar to those observed in postmenopausal women."

Source: https://www.ncbi.nlm.nih.gov/pubmed/17594951

Icietla · December 2017

"The results of an overview of all randomized clinical trials has demonstrated that the use of adjuvant chemotherapy for younger or premenopausal women will reduce their annual odds of death by about 25%. The use of adjuvant tamoxifen in older or postmenopausal women, especially those with estrogen receptor-positive tumors, will have a similar effect."

Source: https://www.ncbi.nlm.nih.gov/pubmed/8004613

Icietla · December 2017

"The value of adjuvant endocrine therapy in saving lives of women with estrogen receptor-positive (ER(+)) early-stage breast cancer cannot be disputed. Tamoxifen has proven to be effective in improving relapse-free and overall survival in both pre- and postmenopausal women with ER(+) early-stage breast cancer. In the meta-analysis of the Early Breast Cancer Trialists' Collaborative Group, the proportional reduction in recurrence and mortality for 5 years of tamoxifen therapy was 50% and 28% respectively for patients with ER(+) tumors."

Source: https://www.ncbi.nlm.nih.gov/pubmed/11498825

Icietla · December 2017

"The value of adjuvant endocrine therapy in saving lives of women with estrogen receptor-positive (ER(+)) early-stage breast cancer cannot be disputed. Tamoxifen has proven to be effective in improving relapse-free and overall survival in both pre- and postmenopausal women with ER(+) early-stage breast cancer. In the meta-analysis of the Early Breast Cancer Trialists' Collaborative Group, the proportional reduction in recurrence and mortality for 5 years of tamoxifen therapy was 50% and 28% respectively for patients with ER(+) tumors."

Source: https://www.ncbi.nlm.nih.gov/pubmed/11498825

heidil00 · December 2017

Thanks so much for copy/pasting the info on the benefits of Tamoxifen.

Maybe I wasn't clear in my original post- thanks for pointing it out. There is no question of me taking it- I'm just questioning WHEN. What difference, if any, would it make if I decided to go into IVF right now vs in 9 months?

That is the question I am trying to get answered!

Peregrinelady · December 2017

The difference is that instead of preventing recurrence in those 9 months, you could be encouraging cancer cell growth.

ShetlandPony · December 2017

The difference is you don't want to give any stray cells or micromets nine months to grow into an incurable metastasis. (To put it yet another way.)

Michelle_in_cornland · December 2017

To the original poster, I don't think a fertility specialist or oncologist would recommend getting pregnant or delivering a baby with this diagnosis. They will probably want you to start Tamoxifen immediately to stop the progress of any latent malignant cells. If I were in your shoes, a surrogate would be what I think is both best for you and for your baby/babies. You could recur while you are pregnant, and that would not be wise. I am just a bit older than you and my kids are 19 and 21, so my reference point is different. With an oncotype of 19, you might want to get a second opinion about chemo? That is intermediate risk according to my Washington University and Harvard University trained onco doctors. If you have a more aggressive cancer when you are younger, onco doctors tend toward recommending chemo. Was there a panel that decided your recommendation, or one doctor? The fact that this occurred during IVF treatments and that it is hormone responsive, would have me looking hard at the surrogate program.

You might be able to send your files to MD Anderson, because of your age and IVF, for a more defined approach to your cancer treatment.

heidil00 · December 2017

Michelle, thanks for the thoughts. I haven't actually met with my Onco Doc yet- that's this morning actually. I will get a second opinion regardless of what he says- as I've done throughout this process.

Dr Google doesn't count, and although these forums are helpful, I find it interesting the 'one size fits all' approach to treatment when it comes to post-surgical care. I'm not hard and fast on having to get pregnant, as I mentioned before I have surrogate options and this isn't about preserving my fertility. But I want to know why I couldn't entertain it prior to treatment. I get what everyone is saying about encouraging growth of stray cells- but again- what I don't understand is I am reading about women who take it for 2yr, stop, get pregnant and then go on to complete the 5 yrs. So why not get pregnant before taking Tamoxifen since it seems the risk returns when you stop taking Tamoxifen, with just a 2/5 year difference? Even Mayo website says current research has shown that becoming pregnant after cancer doesn't cause recurrences and that there is no direct link between IVF and cancer. It's amazing how much conflicting info is out there!

Michelle_in_cornland · December 2017

IVF and cancer. Well, this is a controversial area and not one well studied. We will see, at a later date, more research. It is amazing to me the number of women that I meet, that were IVF patients and then breast cancer patients. Some of them diagnosed while they were pregnant. Pregnancy itself raises the hormone levels traveling in your body, to extremely high levels.

I don't think the women on here are suggesting a one size fits all, but are more cautionary because of their experience. I also hold with the cautionary group, because we have seen this situation play out in our lives and on this website. If you don't need to risk your life to have a baby, then why put yourself through it?

Peregrinelady · December 2017

Heidi, it just comes down to whether you want to roll the dice and see what happens. I am biased as my twin sister did IVF in an attempt to have a 2nd child (first one conceived naturally) and although I do not believe the IVF caused her cancer, I am pretty sure that it would not have been as advanced otherwise. She passed away leaving her 10 year old son without a mother. I miss her every day, but it changed his life forever. I am curious to hear what your oncologist has to say. Please keep us posted.

pupmom · December 2017

I had 2 cycles of IVF 18 years before my diagnosis. However, I did have a sister who was diagnosed with DCIS at 35, so it's hard to distinguish cause.

Michelle_in_cornland · December 2017

I hope Heidi updates us on the docs appt yesterday and is not in shock. The first meeting is pretty unnerving, regardless of IVF.

WorriedMe77 · January 2018

I’m newly diagnosed, I was 14 weeks pregnant at the time of my diagnosis had a ultrasound the same day and my baby didn’t have a heartbeat.... We wanted our baby so bad, I have a 15 yr old but hubby has no kids. I’m 40 and nearing the finish line for me to bear kids, I thought about delaying treatments to have a baby first BEFORE I really understood what this cancer is doing to my body. My MO is great however has no knowledge of fertility and. Cancer.... he wants me to remove my overies, and go on hormonal therapy for 7 years 😫😳 I don’t think he undertands how important a baby is tomis

heidil00 · January 2018

I am the original poster... sorry for delay in responding to all of these messages. Thank you to all for chiming in.

Here's what I've learned.... answers to questions regarding fertility + oncology after a diagnosis is best answered from an Oncofertility Specialist, vs just a fertility clinic or an oncologist. Hard to find! My fertility clinic is with Dr Schoolcraft at Colorado Center for Reproductive Medicine and anyone who knows anything about fertility clinics will know this is one of the best clinics in the world, so thankful and lucky it's in my backyard! My doctor happens to specialize in fertility after cancer so she was able to help answer questions and direct me to the right oncologist.

Basically the timing of when to take tamoxifen is about risk tolerance and that is very individual. If I were a 25yr old that came to either oncologist or fertility clinic doc with a recent diagnosis they both confirmed they would encourage me to harvest and freeze eggs before treatment if I wanted to have kids at a later date. Having done that twice already I know that equals to six months of fertility meds to do two cycles to collect/freeze. That means six months of oral and estrogen patches + oral progesterone to a woman with an estrogen and progesterone positive tumor. When I asked both docs what the difference is between doing that vs getting pregnant (the timing of elevated estrogen/progesterone is roughly the same) and they agreed very little- as estrogen/progesterone levels are elevated either way. The concern is regardless how it's elevated it the elevation that could cause 'rogue cells' to metastasize.

As to the 'one size fits all' recommendation on Tamoxifen dosage- I still don't understand this, but here it goes. Tamoxifen dosage is the same whether I were a 24yr old or 45yr old, a 200lb woman or 115yr, whether I had a lumpectomy, mastectomy, whether I had a healthy BMI or not, smoker, drinker or super healthy vegetarian. No baseline tests nor any ongoing testing other than if I ASK for a blood test six weeks after initial ingesting to see if my body is metabolizing. I don't understand medicine, as it seems every other drug is based on weight at the very least. The only answer from either doc was it's the most studied drug and 20mg works for everyone. Lower dosage hasn't been studied enough to know if a lesser dose would work. Go figure.

The timing of taking tamoxifen is also about risk tolerance. The longer I wait to start the pills the less protected I am. Both also said breast cancer is more likely to metastasize within the first two years, which I thought was interesting as I hadn't read that before. They told me of a current trial going on right now called Promise that is studying women who go off of Tamoxifen after two years to have a baby and then go back on and finish their 5-10yr prescription. It's only in year two and there isn't enough data at this time for them to advise how doing this will affect reoccurrence rates.

As I mentioned before, we are fortunate to have options as we have embryos on 'ice' and can start the surrogate process for baby #2 shortly. None of this is my first choice, but being told 'no' is never good enough for me. When it comes to my health I need to know WHY. Thanks for all of you that chimed in with your thoughts and stories.

Hope this helps others who question their doctors, treatments and of course, filter through Dr Google advise!

Nickel103 · February 2018

Hello,

Just wanted to chime in as I am in a similar position. First, I'd like to say how sorry I am that any of us are in this situation. I was diagnosed at age 34 - found a lump while breastfeeding my 18 month old. We were in the process of weaning and I thought it was a clogged milk duct, and fortunately followed up on it quickly. Was diagnosed as a stage IIB, with a mixed tumor which is apparently very rare. Half is er/pr positive and half is her2 positive. All throughout treatment with chemo I thought I had no positive nodes, and then when I underwent the double mastectomy, they found one positive lymph node with residual active cancer. Because of this I am now taking a supplemental oral chemo for 6 months (xeloda), while I continue herceptin, and letrozole/lupron as my adjuvant hormonal treatment. I desperately want a second child, was planning on trying again around the time I was diagnosed. My husband and I froze 3 embroyos prior to my beginning chemo.

I am being treated at MSK in NY. My oncologist is very risk averse. Initially he really advised me against ever getting pregnant prior to the completion of 5 years on tamoxifen. However he has recently referenced several reputable ASCO studies (I believe the most recent one came out in November 2017) showing there is no increased risk of recurrence for ER/PR positive patients who become pregnant after a minimum of 18 months on some form of hormonal therapy. He is definitely not advocating I become pregnant, especially with my Her2+ being a wild card ( there seems to be no research on pregnancy/recurrence risk for this subgroup). However, he has stated he will support my decision should I go forward. He has throughout indicated the safest option for a baby would be to use a gestational carrier, next safest to do 5 years on hormonal therapy, next safest 3 years, then 2 years, etc. So definitely the longer the better is his outlook.

I am now continuously torn between use of a gestational carrier and carrying a pregnancy myself with our embroyos. I too enjoyed being pregnant and would feel most comfortable with that option. Also the hormonal therapy is terrible - to be thrown into a state of menopause at this age has been very difficult for me especially sleepwise. Also, surrogacy is illegal in NY where I am, which complicated things...not to mention the enormous financial burden. I wish there was a way we could make these decisions with more certainty.

As to the questions about tamoxifen, I'd agree with most posters, and I'm sure that my oncologist would too. I think waiting the duration of a pregnancy (in a high estrogen state) is probably not as safe as the reverse. I am so sorry that you are in the position of having to make that decision. I know from my perspective I want a 2nd baby asap. Waiting is awful!

I have not heard of the promise trial, but I have heard of one called POSITIVE. Dr. Ann Partridge out of Dana Farber is running it, and if I do decide to try for a pregnancy in the next year I would love to participate. Id like to at least feel that my risk would be helping future women in this situation.\

I too am very much of the wanting to know WHY camp. I have been fortunate at MSK my team is pretty thorough at answering questions and providing explanations, which really helps in this situation. Unfortunately though there seems to be so many unknowns still, so the WHY answers don't always come easily.

Pregnancy BEFORE Tamoxifen

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