Thinking ahead: pregnancy after DCIS?
Hello all,
I got good news after my mastectomy last week that I have DCIS only (no invasion). I will be meeting with my surgeons on Monday and will talk more about what was in my pathology report...and I will then set up appts with an oncologist and fertility specialist.
While I plan to discuss this with all the various docs on my team, I also wanted to hear from other women about their experiences and choices. Namely, my husband and I want to start a family. I am 36 and before my diagnosis, we had hoped to start trying for children in Feb 2011. After my diagnosis, this is somewhat up in the air. If I go on Tamoxifen, I know ideally I should wait til 5 years are up (though I have heard of women taking a break after 2 years to try for kids).
I'm wondering what happens if I decide to have a prophylactic mastectomy. Presumably I wouldn't need Tamoxifen in that case... and would that mean we can try for kids sooner? Or is this 2 year window recommended for all cancer survivors regardless of stage or specific characteristics of the cancer?
Any thoughts or experiences from my DCIS sisters? Any specific questions I should be asking my medical team, or other factors we should be considering? Thanks so much!!!
Comments
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Hi Sunshingal- So sorry you are having to be in this club as well.
I am ER (-) but also have wondered about this issue. I had a fairly large area of intermediate to high grade multifocal/multicentric DCIS with necrosis (8x5x9cm). Both my OB and onc told me they would prefer I wait 2 years before considering a pregnancy (? because the highest risk of recurrence is in that time frame?) but I am not sure what, if any, data this is based on.
Presumably after a mastectomy the tamoxifen would be a preventative measure only to prevent disease in your remaining breast (since the DCIS has been already treated with surgery) so you may have a different answer. Take care and hopefully someone with more info will come along soon...
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Hi, Sunshinegal - first of all, that is great that you didn't have any microinvasions! WOOHOO!!!
I am in a similar situation as you, with a few differences. My DCIS was very extensive (I had a 4.5cm palpable lump but the DCIS extended a lot further), I am strongly ER+/PR+, and I am in my late 30's and hoping for a baby (or two!).
Here is the course of action I'm taking, with my thought process behind it:
- I'm NOT doing Tamoxifen in spite of the strong ER+ status. First of all, I'm three years older than you so I don't have as much time. I can't afford to lose even two years by taking Tamoxifen. Plus, I am a big believer in balancing my hormones naturally with diet/lifestyle (which has worked in the past for me, much better than drugs).
- I personally won't consider a prophylactic mx because I want to breast-feed. (BTW, giving birth then breast-feeding itself lowers breast cancer risk... obviously not for all women, but statistically speaking it does lower the risk.)
- My original fertility plan was going to have injectables (and if that didn't work, IVF). Now that I've had DCIS, my fertility specialist does NOT want me taking injectables/gonadotropins because of the increased cancer risk. So I will be doing a Femara cycle instead (for fertility patients, it works similar to Clomid but without the negative side effects, and it's more effective). Femara doesn't increase cancer risk; in fact it's a breast cancer treatment!
- If I end up having to do IVF (which I might, at my age), I will do low-stimulation IVF which is safer for BC patients. I know you didn't mention IVF and you're young enough that you'll probably have no problems conceiving naturally, but I wanted to mention it in case you consider IVF in the future.
- In the meantime, I am taking high doses of iodine. Iodine can clear up fibrocystic disease and ADH, and there's evidence it may be a breast cancer preventative (and deficiency may be a breast cancer risk factor). Iodine deficiency can also cause infertility, miscarriage, and birth defects. I now think that my DCIS and six miscarriages are largely due to the fact that I was very iodine-deficient and didn't know it. So, taking iodine (along with many other diet/lifestyle changes) gives me the confidence most women get from Tamoxifen that I won't get a recurrence.
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A belated thank you for your replies! I wanted to update this thread, as I have since seen two medical oncologists to discuss these questions.
Interestingly, both oncs (one at Lahey, one at Dana Farber) had the same opinion:
- there is no medical need for a prophylactic mastectomy in my case (I am BRCA negative) (yay- I'm keeping my boob!);
- it's my choice whether to take Tamoxifen (it would confer some preventive benefit for the good side, but my increased lifetime risk on that side is only 5-10% so I would only decrease my risk by 2.5-5%);
- if I want to take Tamoxifen I can start it anytime, including in several years, after I've had kids; and,
- we can start trying for kids after radiation treatment which I am 95% sure I am going to do, starting in late January.
So basically, this spring we should have a green light to start trying for a baby!
CandDsMom, I asked both oncs about the 2-year waiting period for getting pregnant, and both independently said that that is more relevant for patients with invasive disease. Because mine was all DCIS, neither had concerns about me trying to get pregnant sooner than that (perhaps their views were also related to my age - 37).
CrunchyPoodleMama, I'm sorry to hear about your miscarriages.
At the moment we have no reason to think I will have problems conceiving, but who knows -- I've never tried before. One sister is extremely fertile (had 3rd and 4th kids - unplanned twins - at 39), the other is too (third child @ 38) but had a clotting disorder that caused at least one of her several miscarriages between children so we may need to pay attention to that. Thank you for mentioning your IVF experiences - I will keep Femara in mind in the event that we need to go the IVF route!
I'm curious to learn more about iodine. None of my docs so far have talked at all about the role of diet or supplements in recurrance prevention. How does one know if they are iodine-deficient? Do you take it as a pill? Powder? Are there any down sides to taking it? Sorry I'm so ignorant on this!
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Thanks for updating... so happy for you that you're going to try for a baby soon (so are we)! Why are you doing radiation -- I assume because you had some close margins?
I would definitely get tested for clotting disorders... I tested negative but my fertility specialist wanted me on baby aspirin anyway (thins the blood). I did baby aspirin for a while but am now eating foods that are anticoagulant instead (flax oil etc.).
None of my docs so far have talked at all about the role of diet or supplements in recurrance prevention.
This is one of my biggest frustrations with doctors!! None of my OB/GYN's/fertility specialists told me about the role of diet/lifestyle in fertility, either. Diet and lifestyle are SO FREAKING IMPORTANT for both cancer prevention and healthy conception. I hope you'll check out two places: the alternative/complementary board here at BC.org, and the alternative forum at www.ovusoft.com. You will learn so much there that I can't possibly explain in one post. (The awesome thing is that the foods, lifestyle choices, etc. that prevent cancer are the same ones to boost fertility!)
As for iodine, you can be tested through your doctor (if you can talk him/her into it) or a naturopath. You can take it as a tablet (Iodoral) or liquid drops (Lugol's - either of which you can buy through Amazon.com or health food stores). If you're hyperthyroid, you shouldn't take it, but for the vast majority of modern-day Americans who are likely deficient, there's not a downside unless you massively OD on it.
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Hi Ladies,
First time on a post ever...kind of nervous. I'm 43 1/4. I had a 12 week miscarriage (my first) while I was turning 43. It was a natural miscarriage at home. Numbers are back to zero. However just after the bulk of tissue passed , my breasts starting to hurt...as if they were hooked up to an electric wire (think pure torture). The severe pain lasted on and off until HGC was zero (another 7 weeks). However my OBYGN suggest a mammogram, on Dec 14th, they found DCIS left breast, micro cluster. I have an apt in Boston for further mamogram etc. this Friday with a breast surgeon.
I still have almost constant pain...like a ache. Although they found the cluster in the L breast, I sometimes still have pain in both breasts.
The thing that is of the MOST concern...is about trying to conceive again..given my age. I have a big list of questions for the dr.s of course, but what do know if any women have had this kind of pain, can anyone tell me about conceiving spontaneously, how long after DCIS and also we have IUI already planned as a back up. I would much prefer not going the IUI route...if it is even still an option. Has anyone had DCIS and not had surgery?
Any input/suggestions would be great. Looking for a suggestion for a GREAT Breast Surgeon in the Boston Area, also would like a suggestion for a High Risk Obygn in the Boston area.
Tks
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I also have just finished my DCIS treatment as well, had genetic tests come back all negative and went to Onc. yesterday as we to wanted to discuss our future of having a family since I am 38, she felt it can lower my risk of future breast cancers and that while pregnant and breast feeding our ER levels normally lower which is good also she said after I have a child we may consider putting me on hormone meds, I guess since I had no invasive cancer this is still an option, I thought that was great that I will still have that option in 3 or so years and that will also help reduce my risk in the future since I am young. I am so happy that this did not stop my future with having a family.
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