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All TopicsForum: Young With Breast Cancer → Topic: Coming off tamoxifen early to have a baby

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 02:03PM

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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Jan 26, 2017 11:23PM clarrn wrote:

Started bleeding heavily today. I know that I am miscarrying. Not sure what's next. Not sure if it is responsible for me to stay off tamoxifen to keep trying. I guess I shouldn't worry about that just yet. Heartbroken.

30 years old at dx, Implant lost due to infection. Open wound packing for 108 days :( Dx 12/4/2013, DCIS, 6cm+, Grade 3, ER+/PR+ Dx 1/29/2014, IDC, 1cm, Stage IIB, Grade 3, 1/3 nodes, ER+/PR+ Surgery 2/27/2014 Mastectomy: Right; Prophylactic mastectomy: Left; Reconstruction (left): Silicone implant, Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy 4/8/2014 AC + T (Taxol) Radiation Therapy 10/15/2014 Breast, Lymph nodes Surgery 2/27/2015 Reconstruction (right): Silicone implant Surgery 3/23/2015 Reconstruction (right): Silicone implant
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Jan 27, 2017 08:14AM fd1 wrote:

clarrn, I'm sorry. Hugs.

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Jan 27, 2017 09:21PM SKD wrote:

how are you doing cllarn?


I start chemo next week followed by surgery than radiation. My son ales born 12 days ago and he is healthy and doing well!

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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Jan 28, 2017 05:55PM clarrn wrote:

SKD- I am coping. I passed my baby at home last night. We are going to bury 'her' in the garden this spring and plant peonies there. Even if we move we can transplant the peonies. My heart is breaking, but my husband is grieving with me, and my beautiful 5 year old (who did not know we were pregnant) gives me purpose and many smiles. She was away at her cousins last night so she wouldn't be there for the painful physical part. We named the baby Celeste Noelle as she is heavenly and we found out we were pregnant a week before Christmas. It is helping me to acknowledge that we lost a very real little person.

Thank you for asking and letting me share. I am grateful that I got to be pregnant for those 10 weeks, and thankful that I got to see her and say goodbye.

Love and baby dust to you all.

30 years old at dx, Implant lost due to infection. Open wound packing for 108 days :( Dx 12/4/2013, DCIS, 6cm+, Grade 3, ER+/PR+ Dx 1/29/2014, IDC, 1cm, Stage IIB, Grade 3, 1/3 nodes, ER+/PR+ Surgery 2/27/2014 Mastectomy: Right; Prophylactic mastectomy: Left; Reconstruction (left): Silicone implant, Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy 4/8/2014 AC + T (Taxol) Radiation Therapy 10/15/2014 Breast, Lymph nodes Surgery 2/27/2015 Reconstruction (right): Silicone implant Surgery 3/23/2015 Reconstruction (right): Silicone implant
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Jan 28, 2017 05:57PM clarrn wrote:

SKD- Congratulations on your beautiful baby boy! Will be thinking of you as you start treatment again.

30 years old at dx, Implant lost due to infection. Open wound packing for 108 days :( Dx 12/4/2013, DCIS, 6cm+, Grade 3, ER+/PR+ Dx 1/29/2014, IDC, 1cm, Stage IIB, Grade 3, 1/3 nodes, ER+/PR+ Surgery 2/27/2014 Mastectomy: Right; Prophylactic mastectomy: Left; Reconstruction (left): Silicone implant, Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy 4/8/2014 AC + T (Taxol) Radiation Therapy 10/15/2014 Breast, Lymph nodes Surgery 2/27/2015 Reconstruction (right): Silicone implant Surgery 3/23/2015 Reconstruction (right): Silicone implant
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Feb 8, 2017 11:56AM SKD wrote:

I'm sorry to hear about clarnn. I hope you are doing okay and I have been thinking about you.

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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Feb 25, 2017 08:06PM clarrn wrote:

How long was everyone's tamoxifen break? Is 1 year typical?

30 years old at dx, Implant lost due to infection. Open wound packing for 108 days :( Dx 12/4/2013, DCIS, 6cm+, Grade 3, ER+/PR+ Dx 1/29/2014, IDC, 1cm, Stage IIB, Grade 3, 1/3 nodes, ER+/PR+ Surgery 2/27/2014 Mastectomy: Right; Prophylactic mastectomy: Left; Reconstruction (left): Silicone implant, Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy 4/8/2014 AC + T (Taxol) Radiation Therapy 10/15/2014 Breast, Lymph nodes Surgery 2/27/2015 Reconstruction (right): Silicone implant Surgery 3/23/2015 Reconstruction (right): Silicone implant
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Feb 25, 2017 08:07PM - edited Feb 25, 2017 08:07PM by clarrn

This Post was deleted by clarrn.
30 years old at dx, Implant lost due to infection. Open wound packing for 108 days :( Dx 12/4/2013, DCIS, 6cm+, Grade 3, ER+/PR+ Dx 1/29/2014, IDC, 1cm, Stage IIB, Grade 3, 1/3 nodes, ER+/PR+ Surgery 2/27/2014 Mastectomy: Right; Prophylactic mastectomy: Left; Reconstruction (left): Silicone implant, Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy 4/8/2014 AC + T (Taxol) Radiation Therapy 10/15/2014 Breast, Lymph nodes Surgery 2/27/2015 Reconstruction (right): Silicone implant Surgery 3/23/2015 Reconstruction (right): Silicone implant
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May 15, 2017 07:50PM scally1 wrote:

Hello everyone! I haven't seen any posts in awhile. I hope everyone is well. Sending you all positive vibes ~~~❤~~~~. I'm still on tamoxifen, debating to take a break next year...

37 at dx. Stage 1.Triple postive. Chek2 mutation. Tumor 1.6cm plus micro tumors
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May 31, 2017 10:52AM operalass wrote:

Hi everyone,

I got married last week to my boyfriend of three years. As of tomorrow, I'm going off tamoxifen since I'm 39 and, well, the clock is ticking! My oncologist said she usually recommends 6 months before trying, which is fine with us as we're going to take the summer to get in shape a bit and take our vitamins every day! My onc is also retiring from Sunnybrook in Toronto. I've been on tamoxifen for 7.5 years now...no idea what's going to happen to my body once I stop. Anyone have any abrupt changes?

All the best xo

Dx 4/3/2009, ILC, Left, 6cm+, Stage IIIA, Grade 1, 2/11 nodes, ER+/PR+, HER2- (IHC) Chemotherapy 5/22/2009 AC + T (Taxol) Surgery 9/29/2009 Lumpectomy: Left; Lymph node removal: Underarm/Axillary Radiation Therapy 11/9/2009 Whole-breast: Breast, Lymph nodes Hormonal Therapy 1/9/2010 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Jun 5, 2017 02:56AM LM070917 wrote:

Hey ladies, I've seen a new study about pregnancy and Er positive bc which wasreleased last Saturday, check it out, sounds positive! This is hope!

http://www.curetoday.com/articles/pregnancy-does-not-lead-to-breast-cancer-recurrence-study-finds

Dx 9/18/2015, IDC, Right, 6cm+, Stage IIIA, Grade 3, 2/14 nodes, ER+/PR+, HER2- Chemotherapy 11/1/2015 AC + T (Taxol) Surgery Lymph node removal: Right, Underarm/Axillary; Mastectomy: Right Radiation Therapy Lymph nodes, Chest wall Hormonal Therapy Arimidex (anastrozole), Zoladex (goserelin)
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Jun 13, 2017 08:27AM - edited Jun 13, 2017 08:28AM by NYinshocked

Hey all,


I really want to share this study with all you guys regarding pregnancy post breast cancer. Largest study on this topic and result is we should can get pregnant after cancer

http://www.ascopost.com/News/55701?utm_medium=Email&utm_source=ExactTarget&utm_campaign&utm_term=6677374

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Jun 22, 2017 09:26PM scally1 wrote:

Thanks for sharing NY. Good to hear!

37 at dx. Stage 1.Triple postive. Chek2 mutation. Tumor 1.6cm plus micro tumors
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Jul 21, 2017 04:05PM clarrn wrote:

Still trying again.... our chances don't look great. Maybe time to look into getting some fertility help. Does anyone know if we can take fertility boosting meds?

30 years old at dx, Implant lost due to infection. Open wound packing for 108 days :( Dx 12/4/2013, DCIS, 6cm+, Grade 3, ER+/PR+ Dx 1/29/2014, IDC, 1cm, Stage IIB, Grade 3, 1/3 nodes, ER+/PR+ Surgery 2/27/2014 Mastectomy: Right; Prophylactic mastectomy: Left; Reconstruction (left): Silicone implant, Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy 4/8/2014 AC + T (Taxol) Radiation Therapy 10/15/2014 Breast, Lymph nodes Surgery 2/27/2015 Reconstruction (right): Silicone implant Surgery 3/23/2015 Reconstruction (right): Silicone implant
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Jul 25, 2017 12:59PM clarrn wrote:

There are 2 lines! :) :) :) Wow! So happy/scared! I see my doctor Friday!!!

30 years old at dx, Implant lost due to infection. Open wound packing for 108 days :( Dx 12/4/2013, DCIS, 6cm+, Grade 3, ER+/PR+ Dx 1/29/2014, IDC, 1cm, Stage IIB, Grade 3, 1/3 nodes, ER+/PR+ Surgery 2/27/2014 Mastectomy: Right; Prophylactic mastectomy: Left; Reconstruction (left): Silicone implant, Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy 4/8/2014 AC + T (Taxol) Radiation Therapy 10/15/2014 Breast, Lymph nodes Surgery 2/27/2015 Reconstruction (right): Silicone implant Surgery 3/23/2015 Reconstruction (right): Silicone implant
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Jul 26, 2017 05:21PM Srh242 wrote:

Congratulations !!!!

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Jul 27, 2017 09:33AM Mabs wrote:

wow! Great news!!! God bless you and your baby!!!

Dx 8/2014, IDC, Left, <1cm, Stage IA, Grade 2, 0/5 nodes, ER+/PR+, HER2- Surgery 9/1/2014 Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left); Reconstruction (right) Hormonal Therapy 11/3/2014 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone), Zoladex (goserelin)
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Jul 27, 2017 10:15AM MirandaPriestly wrote:

Wow - congratulations Clarrn! How exciting for you!! And inspiring, for the rest of us :)

2 years and 1 month before I'm able to take a break from Tamoxifen to TTC and it can't come soon enough.

Sorry if you have already mentioned it, but will this be your first? We were going to start trying for our first (only?) 2 weeks after I was diagnosed. We were just waiting for my husband to finally be done training and to move between cities for his new job. The 3 years on Tamoxifen will be a test of my patience, to be sure.

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Jul 27, 2017 02:00PM clarrn wrote:

Miranda- I have a 6 year old who has been praying for a sibling since she could talk. Cancer definitely put that on hold so when we got the go ahead to try we were thrilled. Unfortunately, my fertility numbers (mostly my FSH) took a big hit and my fertility specialist said we wouldn't get pregnant. Well he was wrong. We miscarried at 10 weeks at the end of January :( which I am still devastated about, but am happily pregnant again. :)

30 years old at dx, Implant lost due to infection. Open wound packing for 108 days :( Dx 12/4/2013, DCIS, 6cm+, Grade 3, ER+/PR+ Dx 1/29/2014, IDC, 1cm, Stage IIB, Grade 3, 1/3 nodes, ER+/PR+ Surgery 2/27/2014 Mastectomy: Right; Prophylactic mastectomy: Left; Reconstruction (left): Silicone implant, Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy 4/8/2014 AC + T (Taxol) Radiation Therapy 10/15/2014 Breast, Lymph nodes Surgery 2/27/2015 Reconstruction (right): Silicone implant Surgery 3/23/2015 Reconstruction (right): Silicone implant
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Aug 31, 2017 01:58PM - edited Aug 31, 2017 01:59PM by fd1

I had my appointment at the oncologist today and I am officially done my five years of hormonals!! He has given us his blessing to start trying in three months after my system clears of the zoladex and exemestane. I'm beyond thrilled! I'm not sure if there is another thread that's more appropriate to write this on since I'm not coming off "early" but I'll update with any news in a few months. I figure it might be inspiring for the newbies.

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Sep 1, 2017 08:48PM clarrn wrote:

fd1- so excited for you! Good luck!

30 years old at dx, Implant lost due to infection. Open wound packing for 108 days :( Dx 12/4/2013, DCIS, 6cm+, Grade 3, ER+/PR+ Dx 1/29/2014, IDC, 1cm, Stage IIB, Grade 3, 1/3 nodes, ER+/PR+ Surgery 2/27/2014 Mastectomy: Right; Prophylactic mastectomy: Left; Reconstruction (left): Silicone implant, Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy 4/8/2014 AC + T (Taxol) Radiation Therapy 10/15/2014 Breast, Lymph nodes Surgery 2/27/2015 Reconstruction (right): Silicone implant Surgery 3/23/2015 Reconstruction (right): Silicone implant
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Sep 6, 2017 02:08PM fd1 wrote:

clarrn - thanks!! I have been following you on the thread. Is all going well to date?

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Sep 7, 2017 11:25AM clarrn wrote:

So far so good :) Thanks fd1!

30 years old at dx, Implant lost due to infection. Open wound packing for 108 days :( Dx 12/4/2013, DCIS, 6cm+, Grade 3, ER+/PR+ Dx 1/29/2014, IDC, 1cm, Stage IIB, Grade 3, 1/3 nodes, ER+/PR+ Surgery 2/27/2014 Mastectomy: Right; Prophylactic mastectomy: Left; Reconstruction (left): Silicone implant, Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy 4/8/2014 AC + T (Taxol) Radiation Therapy 10/15/2014 Breast, Lymph nodes Surgery 2/27/2015 Reconstruction (right): Silicone implant Surgery 3/23/2015 Reconstruction (right): Silicone implant
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Sep 14, 2017 02:41PM scally1 wrote:

HI all,

Feeling a bit bummed.....

AMH results are low at 0.49. Low follicle count (5). Still waiting on FSH results.

Ultrasound showed cysts and concern that tubes might be blocked. My darn endometriosis rearing its ugly head. Have to visit with OBGYN regarding possible surgery.

Not seeming hopeful and doctor doesn't think I'm a candidate for IVF considering results and age. Maybe IUI.

Was hoping I was going to beat the odds and hear good news today.

Might be a good night for a glass of wine with dinner :)

Sorry to vent....not many options to talk to others about this.

Anyone with previous experience or insight under a similar situation?

Thanks xx

37 at dx. Stage 1.Triple postive. Chek2 mutation. Tumor 1.6cm plus micro tumors
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Oct 9, 2017 09:06PM - edited Oct 9, 2017 09:08PM by tatasister10

just wanted to put some hope into the the world. My pregnancy was successful with the help of Ivf. We only had 2 embryos, put both in and both took. Don't let low numbers for amh get you down. I tested on tamoxifen and Lupton and my amh was .16. I also had a huge cyst on left ovary and 1 blocked tube. I didnt give up. My dr put me on a couple weeks of bc to shrink the cyst and now I have 2 beautiful 8 month old twins that remind me every day that God has bigger plans for our lives other than breast cancer. I hit 6 years this year! My first daughter was 4 months old when I was diagnosed so I'm just enjoying this time with my twins since it was stolen from me before. Prayers to all you ladies trying to get pregnant. I hope my story helps.

STILL I RISE! Dx 10/31/2011, IDC, Stage I, Grade 3, 0/7 nodes, ER+/PR+, HER2+ Surgery 11/15/2011 Mastectomy: Left, Right; Reconstruction (left): Nipple reconstruction, Tissue expander placement; Reconstruction (right): Nipple reconstruction, Tissue expander placement Targeted Therapy 12/27/2011 Herceptin (trastuzumab) Chemotherapy 12/27/2011 Carboplatin (Paraplatin), Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 4/30/2012
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Oct 20, 2017 03:57PM scally1 wrote:

Congratulations on your twins! That is wonderful. Thankyou for sharing. It helps a lot to read this. xxx

37 at dx. Stage 1.Triple postive. Chek2 mutation. Tumor 1.6cm plus micro tumors
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Oct 20, 2017 08:19PM tatasister10 wrote:

You are welcome! My original fertility doc didn't think I was a good candidate either. So I went to one of the top centers in Raleigh NC called Carolina conceptions. I went in with a huge cyst, one blocked tube and only had 8 follicles. They went ahead with ivf even tho I had a cyst. Out of that reared 2 ok looking embryos. Their quality was only 2bb. They worked perfectly and are sound asleep in the next room. Get a second opinion. Make sure you aren't taking any tamoxifen or other breast cancer drug for a long time before you have testing done for amh, fsh...ect. You will get inaccurate results if there's any anti hormonals lingering. Lupron takes at least 6 months to clear. Let me know ifnyoi have questions.

STILL I RISE! Dx 10/31/2011, IDC, Stage I, Grade 3, 0/7 nodes, ER+/PR+, HER2+ Surgery 11/15/2011 Mastectomy: Left, Right; Reconstruction (left): Nipple reconstruction, Tissue expander placement; Reconstruction (right): Nipple reconstruction, Tissue expander placement Targeted Therapy 12/27/2011 Herceptin (trastuzumab) Chemotherapy 12/27/2011 Carboplatin (Paraplatin), Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 4/30/2012
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Oct 20, 2017 08:35PM tatasister10 wrote:

You are welcome! My original fertility doc didn't think I was a good candidate either. So I went to one of the top centers in Raleigh NC called Carolina conceptions. I went in with a huge cyst, one blocked tube and only had 8 follicles. They went ahead with ivf even tho I had a cyst. Out of that reared 2 ok looking embryos. Their quality was only 2bb. They worked perfectly and are sound asleep in the next room. Get a second opinion. Make sure you aren't taking any tamoxifen or other breast cancer drug for a long time before you have testing done for amh, fsh...ect. You will get inaccurate results if there's any anti hormonals lingering. Lupron takes at least 6 months to clear. Let me know if you have questions. Id be glad to help anyone.

STILL I RISE! Dx 10/31/2011, IDC, Stage I, Grade 3, 0/7 nodes, ER+/PR+, HER2+ Surgery 11/15/2011 Mastectomy: Left, Right; Reconstruction (left): Nipple reconstruction, Tissue expander placement; Reconstruction (right): Nipple reconstruction, Tissue expander placement Targeted Therapy 12/27/2011 Herceptin (trastuzumab) Chemotherapy 12/27/2011 Carboplatin (Paraplatin), Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 4/30/2012
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Oct 27, 2017 02:06PM fd1 wrote:

My last Zoladex shot was August 19. I got my period this week! Wooo! I have one more month to wait before the drugs are completely out of my system so maybe Christmas will be a busy time. :P

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Oct 30, 2017 12:31AM clarrn wrote:

Good luck fd1!

30 years old at dx, Implant lost due to infection. Open wound packing for 108 days :( Dx 12/4/2013, DCIS, 6cm+, Grade 3, ER+/PR+ Dx 1/29/2014, IDC, 1cm, Stage IIB, Grade 3, 1/3 nodes, ER+/PR+ Surgery 2/27/2014 Mastectomy: Right; Prophylactic mastectomy: Left; Reconstruction (left): Silicone implant, Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy 4/8/2014 AC + T (Taxol) Radiation Therapy 10/15/2014 Breast, Lymph nodes Surgery 2/27/2015 Reconstruction (right): Silicone implant Surgery 3/23/2015 Reconstruction (right): Silicone implant

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