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Topic: Coming off tamoxifen early to have a baby

Forum: Young With Breast Cancer —

Connect with those under 40 who have been diagnosed.

Posted on: Jan 25, 2011 04:03PM

bearcat13 wrote:

Hi everyone

I'm a little lonely over here in the UK and was hoping to find some kindred spirits.  I'm now almost two years on from my diagnosis.  I was diagnosed with Her 2+, weakly ER+ breast cancer in April 09 at the age of 37 about three months before we were due to be married and a few weeks after completion of our first round of IVF (sadly unsuccessful) for which I'd given up my rather stressful job to give it the best chance.  The last few years have been a whirlwind of chemo, surgery (I had a mastectomy and reconstruction and lymph node clearance), radiotherapy followed by herceptin, taking me to mid 2010.  For a full five months the Doctors thought I had secondary cancer but thankfully later results showed that they had been mistaken.  I'm now on tamoxifen (just over a year in with four more to go) and zoladex and am contemplating coming off the tamoxifen early to have a baby. 

I'm waiting for a test on my ovarian reserve which will show whether I am producing sufficient follicles to make embryo freezing viable.  Once that comes through (and I suspect it will show that there is no point going down the embryo freezing route) I will have to make the decision whether to come off the tamoxifen this year whilst I'm still 39 and therefore eligible for free treatment (I know, we are SO lucky in the UK) and have presumably a higher fertility rate.  Or wait a year or two when my fertility will be at rock bottom.  I've never felt so old!!!

This is a very lonely decision to have to make, with no statistics and limited evidence to spell out the risks.  My oncologist is very happy with me going down the IVF route, but the odds really do seem to be stacked against it being successful. Adoption also looks challenging for us because of my medical history and my partners (he has a spinal injury and is paralysed from the chest down). 

I went for a consult with the fertility clinic over the weekend and was shocked to hear that one of the UK's most famous fertility clinics had never treated anyone in my situation.  It seems that very few women of child bearing age, who want children but are at that crucial age when they can't wait five years get the sort of aggressive cancer that I had.  Most people have either had their family or have had time to freeze their embryos.   So I'm feeling a little alone.  Whilst I wouldn't wish this situation on anyone, it would be great to hear from someone else who is struggling with the decision whether or not to come off tamoxifen after a year and a half to try for pregnancy.

Take care all

Lisa x
Dx 3/9/2009, IDC, 6cm+, Stage II, Grade 2, 1/14 nodes, ER+/PR-, HER2+
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Jul 2, 2011 09:00PM Aletheai wrote:

Hi ladies,

I was diagnosed just 3 months ago and have had 4 surgeries to become cancer free. Since one of my lymph nodes was positive I am supposed to start chemo within the next 2 weeks. I've made the gut wrenching decision to freeze my eggs as an insurance policy since my estrogen receptors were 100% positive. I am not married, but I do have someone wonderful in my life who has made this process more bearable. But I worry so much about my ability to have children in the future. I am 29 now & after 8 cycles of ACT & 6weeks of radiation i will be 34 by the time I get off tamoxifen. Any suggestions/advice? I'm kinda nervous/apprehensive about everything!

Dx 4/19/2011, IDC, 1cm, Stage IIB, Grade 3, 1/2 nodes, ER+/PR-, HER2-
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Jul 2, 2011 09:07PM IllinoisNative wrote:

Hello everyone!  Lisa, I will be in your situation.  I have two frozen embryos waiting for me.  My doctor told me I could go off tamoxifen in two years.  I'm finishing radiation now.  I'm 36.

Good luck!

BRCA 2 Positive Dx 11/27/2010, IDC, 4cm, Stage IIA, Grade 3, 0/4 nodes, ER+/PR+, HER2-
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Jul 4, 2011 06:35PM sakura73 wrote:

Alethei - ask your fertility doctor about Zoladex injections during chemo to shut everything down - it reduces the risk of permanent damage to your ovaries. Mine came back to life by themselves 6 months after chemo and I am a fair bit older than you, so I have not (touch wood) needed to use the eggs and ovarian tissue I had frozen. (I did AC then T, over 6 months. My baby is due in 7 weeks.

 I also recommend that you see a naturopath during and after chemo and radiation. Radiation affects your body's ability to retain folate: something you'll need during pregnancy. And other supplements can help keep your body on as even a keel as possible.

Also, you don't HAVE to stay on Tamoxifen for 5 years. I know many oncologists support women taking a break after  2 years to try to conceive. 

 Good luck to you - please feel free to PM me with any questions.

Dx 1/22/2009, ILC, 2cm, Grade 2, 2/17 nodes, ER+/PR+, HER2-
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Jul 19, 2011 01:38PM bearcat13 wrote:

Hi everyone

Sorry for the long silence. Rachel, you must be soooo excited!  I hope the last few weeks of your pregnancy go well.

Alethei, I'm so sorry to hear that you are in this position too.  Do take heart though, I was 37 when diagnosed and my periods returned after 6 rounds of FECT.  My fertility is not great now, but I have a hunch that I could conceive naturally if I had that option (my husband has fertility issues that mean we have to use donor sperm so it isn't an option for us) and I've certainly heard of that happening for other women.  i can't remember the exact statistic quoted to me about the percentage of young women who get through chemo with fertility intact and age is very much on your side.  It is fairly good odds.  My oncologist, from one of the top hospitals in the UK is firm that pregnancy does not increase risk of recurrance in women who have had breast cancer.  My advice would be to focus on getting through the next few months and looking after yourself.    Bottom line is, that it is possible to have children after breast cancer.

Hi Illinois native, thanks for the good luck wishes.  Good luck to you too as you reach the home strait.  Such good news that you have embryos.  I hope it has all gone well.

I'd be very happy to share my experiences with you both when you are ready. 

 As for me, well I'm still trying to start IVF.  I've had three periods and three scans.  Each one suggested that I have an ovarian cyst.  Not a problem normally, but means that I can't progress with stimulation and egg collection.  Unfortunately, they only realised part way through the first IVF cycle, so I've lost one funding round. I've got one left and have to start that in the next three months before I turn 40.  Talk about the biological clock ticking! The whole process has been frustrating and played havoc with work - how can you plan anything when every three weeks you may, or may not have IVF!!  On the plus side, they can see some follicles in my ovaries so despite my low AMH reading (a test all post chemo young women should take to get an idea of ovarian reserve), I could conceive.  I just need to be able to try.  I'm doing ok, holding it together, but sometimes just have a good sob to myself.  Like today when a friend of mine with two school age kids announced her third pregnancy.  I just wasn't expecting it, I guess, normally you can spot the potential mothers and mentally prepare!  Soo, it's a bit up and down, but at least I have a chance to try.  And if it's not successful I'm going to the Maldives.  And there's always egg donation, I guess.

 Love and hugs to you all

Lisa xx

Dx 3/9/2009, IDC, 6cm+, Stage II, Grade 2, 1/14 nodes, ER+/PR-, HER2+
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Jul 20, 2011 09:03PM sakura73 wrote:

Dear Lisa,

I am sorry to hear things are not running as smoothly as they could but I am keeping my fingers crossed for you and your next cycle of IVF. It is great that they can see follicles there.

 Having a good sob is fair enough: it is really hard when other women move ahead with the things we so wish for ourselves. You're being wonderfully positive and as you say, you do have other options if this next round doesn't work. In Australia the age cut off is 45: fancy a speedy emigration down under?

  R xx

Dx 1/22/2009, ILC, 2cm, Grade 2, 2/17 nodes, ER+/PR+, HER2-
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Jul 25, 2011 04:50PM bearcat13 wrote:

Hi Rachel

Now there's a thought - sun, sea, sand and a free baby.  Sounds great!  Thanks for the support, it really helps.

 Hi Hadley, that's my dream too.  Here's keeping everything crossed for us all!

 Lots of love

Lisa xx

Dx 3/9/2009, IDC, 6cm+, Stage II, Grade 2, 1/14 nodes, ER+/PR-, HER2+
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Jul 31, 2011 12:42AM SKD wrote:

Hi ladies!

I just went off tamoxifen after 8 months of being on it,
my husband and I want to start a family soon but we have to
wait 3 months for it to clear out of my system and I also have to
wait until after my exchange surgery in October. I did get my period
back, although it still isn't completely consistent (went 3 months with out
It but the past 3 months I got it every 27-30 days). Any encouraging
stories would be helpful! We did freeze embryos in case too but we
are hoping to have it tr natural way

Dx 3/21/2010, IDC, Right, 2cm, Stage IIB, Grade 3, 1/7 nodes, ER+, HER2- Dx 3/29/2010, IDC, 3cm, Stage IIB, Grade 1, 1/7 nodes, ER+ Surgery Lymph node removal: Right, Sentinel, Underarm/Axillary; Mastectomy: Right; Prophylactic mastectomy: Left; Reconstruction (left): Silicone implant, Tissue expander placement; Reconstruction (right): Silicone implant, Tissue expander placement Chemotherapy FAC
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Jul 31, 2011 07:36PM sakura73 wrote:

Hi SKD,

 I see you are really young: am sure you will have no trouble conceiving naturally! I am 38 and I managed it 9 months after my period returned and am now 37 weeks pregnant with a very wriggly squirmy baby boy. Tamox doesn't affect fertility (if anything it increases it!) and at your age am sure your risk of permanent infertility was very low. But with the embryos frozen you have all bases covered.  You'll be fine!!

Dx 1/22/2009, ILC, 2cm, Grade 2, 2/17 nodes, ER+/PR+, HER2-
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Aug 9, 2011 12:51AM NitNat wrote:

I have been debating this issue continually in my head, and the longer I am on Tamoxifen the easier the decision is to stop it early. I am going to try and continue taking my hormone drugs for 2yrs (There's 106 days left- not that I'm counting or anything!) And then I hope I will be posting a successful baby story here! Plus I just don't think the side effects from tamoxifen are giving me a good quality of life. I'm getting married in January which is so exciting and then next year will hopefully be a new chapter in my life!! I have seen 2 differently oncologists- 1 really recommends staying on the drugs for 5yrs, the other believes 2 years is sufficient- I think it is important to do what is right for you!). I feel like I have put my life on hold just waiting! Waiting to make my anniversary dates with an all clear, waiting to finish my treatments, waiting to be well enough to have a wedding and for me I'm sick of waiting to do alot of things in my life I have always dreamed about and now I am just going to do it! It is great to hear other women's stories with this issue!

Dx 5/1/2009, IDC, <1cm, Stage I, Grade 3, 0/4 nodes, ER+/PR+, HER2+
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Aug 16, 2011 04:11AM bearcat13 wrote:

Hi all

A bit of an update from me.  Good news! I was finally able to progress with a round of IVF, the cysts finally disappeared.  I can't help but wonder whether my body just needed a few more months than the three months they recommend to get the tamoxifen out of the system.  To my great suprise I produced five follicles and got four eggs.  Two of these fertilised with donor sperm.  So on Friday I had the embryos implanted and on the 28th August I'll find out if it worked.  I'm just amazed that I got so many eggs given how low my ovarian reserve was (for those in the know, my AMH was less than 1 - not good news).  I cried when they told me they'd got four eggs.  I have to say, I'm very proud of my body.  I know people normally get loads more eggs, but what the hell?  I have a chance!  For those of you in their twenties and thirties, you should get LOADS more eggs than me, so I hope this gives you hope.

SKD, the fact that your periods have come back so quickly is really encouraging and waiting for them to settle down makes sense.  Best of luck with it.  It can be done.

 Hi NitNat, I so know what you mean about waiting.  I feel like certain parts of my life has been on hold for years.  Good for you on your decision.  This is such a personal choice and you have to do what feels right for you.

Hi Rachel, how's the waiting going for you?  You must be due to give birth imminently, I hope it all goes well.

 Lots of love to you all

xxx

Dx 3/9/2009, IDC, 6cm+, Stage II, Grade 2, 1/14 nodes, ER+/PR-, HER2+
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Aug 18, 2011 08:03PM sakura73 wrote:

Lisa that is fantastic news! Our bodies are amazing, aren't they: they work very hard not to let us down. Am keeping everything crossed for you and your embryos.

I am full term today and very, very heavy. Very excited about his arrival but totally over being pregnant. Booked for an induction on Tuesday if he doesn't arrive by himself before then. He's still squirming a lot and hasn't quite dropped into position, but some gardening and exercise over the weekend will help him along I hope.

Dx 1/22/2009, ILC, 2cm, Grade 2, 2/17 nodes, ER+/PR+, HER2-
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Aug 19, 2011 12:36AM NitNat wrote:

All the best Sakura- you're an inspiration!

Dx 5/1/2009, IDC, <1cm, Stage I, Grade 3, 0/4 nodes, ER+/PR+, HER2+
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Aug 20, 2011 03:03AM bearcat13 wrote:

Thanks Rachel.  All the very best of luck to you and your little boy on Tuesday.  I hope it's an easy birth.  Love and hugs Lisa xx

Dx 3/9/2009, IDC, 6cm+, Stage II, Grade 2, 1/14 nodes, ER+/PR-, HER2+
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Aug 25, 2011 11:56AM JenXX wrote:

Congrats ladies that is wonderful news!!

 I just got engaged to my soulmate and since I'm already 38 my plan is to stop the tamox after only 2 years, get married, have my reconstruction surgery, then start trying to conceive!  I hope to be posting a similar success story as yours in about a year!

Dx 7/28/2009, 2cm, 0/4 nodes, ER+/PR-, HER2+
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Aug 31, 2011 09:31AM sakura73 wrote:

Well, he is here! An emergency C -section in the end as the cord was around his neck and preventing him from moving down. His name is Arthur William and, though I shouldn't say this about my own baby, he is gorgeous. It is so strange to look at him and think that he was inside me a week ago. He was 8 pounds 11 ounces (so maybe it is just as well it was a C-section!!) and is healthy, thank God.

I wish all on this thread this kind of happiness. You all deserve it.

Dx 1/22/2009, ILC, 2cm, Grade 2, 2/17 nodes, ER+/PR+, HER2-
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Aug 31, 2011 06:27PM ratbait wrote:

Congratulations! Babies post bc are such a blessing. Hope you and Arthur are doing well.

Stage III, ER/PR+, Her2-
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Aug 31, 2011 07:46PM Cheylana wrote:

Congratulations!

Dx 3/18/2008 @ age 32, 3.6 cm IDC, ER+(15%). A/C, bmx, Taxol & Abraxane. Exch for 450 cc silicone implants. Completed 3-year Zometa trial. Tamox (sometimes). Single, have bunny Axel :-)
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Sep 1, 2011 11:53PM SKD wrote:

Yay!! Congrats sakura on the new addition! You bring so much hope!! Hoe exciting for you and I am sure you couldn't be happier!!

Dx 3/21/2010, IDC, Right, 2cm, Stage IIB, Grade 3, 1/7 nodes, ER+, HER2- Dx 3/29/2010, IDC, 3cm, Stage IIB, Grade 1, 1/7 nodes, ER+ Surgery Lymph node removal: Right, Sentinel, Underarm/Axillary; Mastectomy: Right; Prophylactic mastectomy: Left; Reconstruction (left): Silicone implant, Tissue expander placement; Reconstruction (right): Silicone implant, Tissue expander placement Chemotherapy FAC
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Sep 2, 2011 02:23AM NitNat wrote:

So please for you and baby Arthur!! Enjoy motherhood and a long healthy life of watching your baby boy grow up!! CONGRATUALTIONS!!

Dx 5/1/2009, IDC, <1cm, Stage I, Grade 3, 0/4 nodes, ER+/PR+, HER2+
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Sep 4, 2011 05:23AM TreadSoftly wrote:

congrats sakura!! you are such an inspiration to all of us! Im sure baby Arthur is just gorgeous!

'Long may you run' Dx 9/28/2009, 2cm, Stage IIA, Grade 2, 0/7 nodes, ER+/PR+, HER2-
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Sep 18, 2011 12:24PM kk11 wrote:

Hi ladies - I haven't even started Tamoxifen yet, but I'm already planning on when I stop it! My husband and I had been trying for our first baby since January 2010 and found out we were pregnant on July 4th but unfortunately miscarried at 10 weeks. It ended up being a molar pregnancy (rare complication) and I needed chemo for 2 1/2 months. After that I was told to wait 6 months to try again, but 2 months into that wait, I found a lump and a few days after that I joined the bc community. Being told 5 years of Tamoxifen feels like a sentence to me. I am telling myself 2 years and we'll see how I'm doing at that point. Earlier this year 6 months felt like an eternity. It's so hard knowing it's going to be MUCH longer than that.

I have two rounds of Taxol left (Tuesday is my next one) and then my swapout surgery for my implant about a month later. I just want to start the Tamoxifen already so I can start the countdown to stopping it. 

 I popped on here because I wanted to find others who are stopping Tamoxifen early because it gives me encouragement. 20 months ago, we started trying for a baby, and we're still childless, but you give me hope that we WILL get our baby in the end. 

Congrats to those who are pregnant or have had babies after bc and good luck to those of you who came off Tamoxifen early to try for one. 

Kristien; 33; 2 1/2 months of chemo for Molar Pregnancy. Dx w/ BC 2 months later @28. Uni MX w/ TE 5/25. More chemo -4XAC; 4XTaxol. Finished 10/4/11. Exchange on 11/4/11. Plus Tamox. First child post cancer on the way! Dx 4/19/2011, IDC, 2cm, Stage IIA, Grade 3, 0/6 nodes, ER+/PR-, HER2-
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Sep 29, 2011 10:37PM wifemomequestrian wrote:

I found out I was pregnant with my second child 4 1/2 months into my tamoxifen treatment. I struggled at first with the fear of coming off the tamoxifen and then the fear if I had this child what would the tamoxifen do to him. After meeting with all my docs I decided to stop Tamoxifen and be a mom again. I wasn't even able to have my 6 month post treatment check. There was no info on how having a child would effect chance of reoccurance so it was scary. I decided my child was meant to be and have been blessed with a healthy baby boy may 26, 2010. I had my first post treatment mammo in June and am healthy and now see my surgeoon once a year. My son is 16 months old and a total joy. I ditched my onc that saw me thru treatment because he told me I was making the wrong choice to have the baby. The onc I changed to said he was comfortable with it as long as I went back on Tamoxifen after 1 year. (I breast fed successfully on one side too!)
This is your decision. The chance was worth it to me!

katrina Dx 7/15/2008, 2cm, Stage IIB, 5/24 nodes, ER+/PR+
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Oct 5, 2011 12:27AM bikenyc wrote:

I finished with chemo almost 4 months ago, been on the tamoxifen for 2 months.  I'm 42 years old (41 at diagnosis) and this was going to be the year I just said the hell with it (I'm single) and went ahead and had a baby.  Of course the BC got in the way and I lost a year to treatment.

Luckily I had frozen a cycle of eggs a couple years ago (14 of those suckers on ice) so it wasn't something I had to try and rush to do before I started chemo. It was all so stressful, I don't think I could have done it....all those hormones...I would have lost my mind.

I knew about the 5 years tamoxifen/no pregnancy going in, but haven't had the courage to revisit with my onc until last week.  I just needed to know what I can plan or can't plan for. So I asked him about the possibility of going off the tamoxifen at some point for a year to have a baby and, if that wasn't in the cards, how long I should wait to start thinking about using a surrogate.  Basically it's also me asking how bad he thinks it is/how worried I should be about my health in general.

My onc went through my path again and said he wouldn't be comfortable with me not on the tamox given my tumor size, node involvement and hormone receptivity. That wasn't totally shocking to me. But what was a bit of a jolt was that he thought I should wait at least 3 years before even pondering potentially using a surrogate/thinking about a baby.

I know he's just advising based on what he thinks is "prudent," but now I'm left not only feeling like I'm in some sort of baby purgatory, but also even more stressed about the potential of it coming back then I was before.   I just don't see what I did all this for if it wasn't to continue on with living and making plans. Grrrrr.

4 AC and 4 Taxol complete June 16, 25 rads complete Sept 6, Herceptin complete May 2012, Tamoxifen for 5 years. Diep flap reconstruction 12/11 (Sweets Syndrome), Stage 2 11/12. Dx 1/20/2011, IDC, 4cm, Stage IIB, Grade 3, 2/23 nodes, ER+/PR-, HER2+
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Oct 5, 2011 09:30PM NitNat wrote:

Hi bikenyc, I understand totally what you're saying. It is a hard choice and at the end of the day no one has a crystal ball and knows what lies ahead of us. I felt like I had my life on hold just waiting to jump through each hoop with treatment. I felt like all my dreams and goals on the future were stagnate, then I made the decision to live my life for now!! To do all the things I had planned and stay positive. Listen to your body and do what feels right!! Listen to what the doctors have to say but just know they have to say those things to cover all basis.... we only get one life! Try not to waste time worrying about things that may not happen.

Dx 5/1/2009, IDC, <1cm, Stage I, Grade 3, 0/4 nodes, ER+/PR+, HER2+
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Oct 5, 2011 11:12PM - edited Oct 5, 2011 11:12PM by lisa_loves_alice

bikenyc -- ugh, I think I would get a second opinion.  I had negative sential nodes, but I've had two oncologists tell me it's okay to go off of Tamoxifen after 2 years.  I'm starting to wonder if I want to wait that long but I suppose I should.

katrina -- that is so awesome!! how long did you breastfeed? I'm getting totally ahead of myself but I was so sad to have to stop breastfeeding my daughter to do chemo -- I'd love to be able to breastfeed if we have another baby someday.  but then I was thinking, if it takes a while to get pregnant, then the pregnancy, plus breastfeeding -- it could end up being a long time off of tamoxifen, maybe a bit over two years.

dx 8/31/10 @32 yrs and 12 weeks pregnant. stage 2, ER+/PR+/Her2+. Lumpectomy and SNB (0/3 nodes). AC (4x3 wks), taxol with herceptin x12 weeks, herceptin for the rest of the year. Radiation x 33. Tamoxifen for 2 years, then we'll try for baby #2.
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Nov 14, 2011 12:05AM abatellik wrote:

WHatever happened, Bearcat? Did the IVF take? Reading this thread tonight for some positivity becayse 5 years sounds like such a long time to wait! (I will start Tamox next month). I hope everything went well for you!

Dx 3/9/2011, IBC, <1cm, Grade 2, 0/6 nodes, ER+/PR+, HER2+
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Dec 16, 2011 05:19PM bearcat13 wrote:

Hi everyone,

Thankfully, amazingly, astoundingly the IVF did take!  I'm 8 weeks pregnant!  I cannot believe that we have been this lucky.  It was our last round of IVF (second one post cancer, third all together).  It's been a rough few weeks because I started bleeding almost as soon as I had the positive pregnancy test and I was convinced that I miscarried.  I've just had a scan and it shows that everything is absolutely fine.  I am cautiously optimistic, at 40 one can't assume things will go smoothly and it's very early days.  But at least this shows that post chemo, even with only two chances and a very low ovarian reserve, getting pregnant is possible. 

All the best to you all, especially those in tamoxifen purgatory or trying to conceive.

Happy Holidays!

xx

Dx 3/9/2009, IDC, 6cm+, Stage II, Grade 2, 1/14 nodes, ER+/PR-, HER2+
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Dec 16, 2011 09:16PM jpmercy wrote:

Bearcat!!! Yay! Keeping my fingers crossed for you and tons of prayers and love your way!

Jennifer 7/27/10 DCIS 3cm Grade 3 w/ 2mm IDC found after BMX 9/10 ER/PR+ HER2 neu +++ Surgery 9/2/2010 Mastectomy: Left, Right; Reconstruction (left); Reconstruction (right) Targeted Therapy 10/11/2010 Herceptin (trastuzumab) Chemotherapy 10/11/2010 Taxol (paclitaxel)
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Dec 16, 2011 10:35PM MiniMacsMom wrote:

Congrats!! Will be sending good thought your way!  I wish you all the best, and what a great holiday present!!

Diagnosis: 10/25/2011, IDC, 9cm, Stage IIIa, Grade 3, 4/15 nodes + Rotter's Node, ER+/P+-, HER2-, BRCA 2+
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Dec 30, 2011 02:29AM bearcat13 wrote:

Hi MiniMacsMom and jpmercy,

Thanks for your good wishes.  It still seems a little surreal, but we're over the moon!  Hope you're having a great holiday season

xx

Dx 3/9/2009, IDC, 6cm+, Stage II, Grade 2, 1/14 nodes, ER+/PR-, HER2+

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