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 03:03PM

Posted on: Jan 25, 2011 03:03PM

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 18, 2013 02:44AM Rutts wrote:

Hi slg76

My next onc appointment isn't actually until march 2014 but I can't wait that long. I'm going to call my Macmillan nurse to get some advice from her.

I've decided that, if its ok with my docs, I would like to come off tamoxifen in January 2014 as that will be 2 years of taking it and 2years 6months since diagnosis.

How are you doing slg76?

xx

Dx 6/15/2011, DCIS, 1cm, Stage I, Grade 3, 0/1 nodes, HER2- Surgery 7/4/2011 Lumpectomy: Right; Lymph node removal: Right, Sentinel Chemotherapy 9/6/2011 CEF Hormonal Therapy 1/2/2012 Radiation Therapy 1/10/2012 Breast
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Jul 18, 2013 03:25AM fab1 wrote:

Hi



Just to add that I've decided I will nit be doing tamoxifine. I will be going down the homepathic route and change life style and diet to concur a reoccurrence.

Dx 4/9/2013, DCIS, 3cm, Stage IIA, Grade 3, 1/3 nodes, ER+, HER2- Surgery 5/10/2013 Lumpectomy: Right; Lymph node removal: Right, Sentinel Chemotherapy 7/1/2013 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxotere (docetaxel)
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Jul 18, 2013 11:05AM slg76 wrote:

fab1-good to hear you have a plan in place.  I'm a big believer in both western and alternative medicine.  What changes are you making in diet?  Are you taking particular supplements?  My onc is a big supporter of vitaminD and fish oil...which I guess everybody should take anyhow.

Rutts-can you make an extra apt with your onc?  I forget where you are and don't know your insurance info.  Anytime I want to talk to my onc she will see me and I just pay the office copay of $30.  

I'm doing well.  I just finished a third round of Femara, which is a fertility drug much like Clomid.  No luck so far. My body didn't respond to the medication by making extra follicles like it should have.  I'm working on finding a way to finance a cycle of injectable medication.  I found one financial assistance program that I qualify for and will send off the application this weekend.  I'm pretty sure if I don't get money from that we will just borrow the money and go for it.  It would be around $2000.  

Arale--sounds like we have some things in common.  Ovulation sticks usually don't work for me.  Since treatment my hormone levels are wacky and the sticks say I'm ovulating all the time.  I also get egg white mucus several times a month but usually don't ovulate at all.  I recently learned that you can have a regular cycle and not ovulate!  I had no idea that could happen but that was in fact what my body was doing.  You will have to get a day 3 progesterone test done to see if you ovulated the prior month.  Remember, if you are using the sticks (as opposed to a digital monitor) they turn positive the day BEFORE you ovulate and will probably be negative again by the time you actually ovulate.  

Dx 5/2010, IDC, Stage IIIA, 0/8 nodes, ER+/PR+, HER2- Chemotherapy 5/31/2010 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxotere (docetaxel) Surgery 12/11/2010 Lumpectomy: Right; Lymph node removal: Right, Underarm/Axillary Hormonal Therapy 2/14/2011 Radiation Therapy Breast, Lymph nodes
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Jul 18, 2013 11:18AM fab1 wrote:

Sig76



I've changed my diet im juicing fruit and veg ever day and no red meat. No sugar, once I complete the chemo my homepath will give list of foods to take to combate eastogen positive. I will send a list once I got it from her. X

Dx 4/9/2013, DCIS, 3cm, Stage IIA, Grade 3, 1/3 nodes, ER+, HER2- Surgery 5/10/2013 Lumpectomy: Right; Lymph node removal: Right, Sentinel Chemotherapy 7/1/2013 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxotere (docetaxel)
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Jul 19, 2013 06:07AM Rutts wrote:

Slg76 - I live in the uk so I'm really lucky to have the support of the NHS and yes I'm hoping I can make another appointment.
Sorry to hear your fertility treatment isn't working yet but I'm sure it will and I really hope you get the funding you need.

Fab1 - your plan of going down the homeopath route sounds really good. Really hope it works for you. And I would also be interested in your food/diet list when you get it

xx

Dx 6/15/2011, DCIS, 1cm, Stage I, Grade 3, 0/1 nodes, HER2- Surgery 7/4/2011 Lumpectomy: Right; Lymph node removal: Right, Sentinel Chemotherapy 9/6/2011 CEF Hormonal Therapy 1/2/2012 Radiation Therapy 1/10/2012 Breast
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Jul 21, 2013 10:09AM fab1 wrote:

Hi rutss



I will post list once I get it. I noticed your from UK to, where you from in UK?

Dx 4/9/2013, DCIS, 3cm, Stage IIA, Grade 3, 1/3 nodes, ER+, HER2- Surgery 5/10/2013 Lumpectomy: Right; Lymph node removal: Right, Sentinel Chemotherapy 7/1/2013 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxotere (docetaxel)
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Jul 22, 2013 06:59AM Rutts wrote:

Hi fab1 I'm not far from the Bristol area :)

Dx 6/15/2011, DCIS, 1cm, Stage I, Grade 3, 0/1 nodes, HER2- Surgery 7/4/2011 Lumpectomy: Right; Lymph node removal: Right, Sentinel Chemotherapy 9/6/2011 CEF Hormonal Therapy 1/2/2012 Radiation Therapy 1/10/2012 Breast
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Jul 22, 2013 07:32AM fab1 wrote:

Hi girls



I just thought I would share with you a lady who has created a blog in which she gives excellent ideas and suggestions on what to eat extra fir those who have gone through  b.c. She herself is a survivor and decided not to go down tamoxifibe route but through a holistic approach. See info@marnieclark.com. You can contact her personally and she id very good at responding with her views and experiences.



Rutts good to hear from someone in UK. X

Dx 4/9/2013, DCIS, 3cm, Stage IIA, Grade 3, 1/3 nodes, ER+, HER2- Surgery 5/10/2013 Lumpectomy: Right; Lymph node removal: Right, Sentinel Chemotherapy 7/1/2013 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxotere (docetaxel)
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Jul 29, 2013 09:14AM jpmercy wrote:

Hi girls! Just wanted to check in,it has been forever since I have been on, the twins are so much fun but sooo much work! We never sleep! Lol my three year old also keeps us on our toes so not much down time the girls are six months now and doing great, starting to sleep!! Lol! I just skimmed the last few months of posts! Letlet congrats!!! I love hearing success!! As for some comments on recurrence with pregnancy, my oncologist never blinked and eye at the thought of there being a problem al we know is that there is no real evidence of recurrence and those who have become pregnant continue to do well, my onc even said the estrogen is different in pregnancy, am I scared that although I'm not BRCA that my girls may one day get breast cancer, of course, not a day goes by that I don't think about it but I try to be hopeful when my mom had breast cancer to when I got it so much has changed hoping they will know more in 20/30 years and my girls won't live in fear! Good luck ladies keep the hope and know it can happen! My twins were a complete surprise no drugs or fertility treatment! If I can figure out how to post a pic I will!!take care lots of love and prayers to each of you!!!! Xoxo

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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Jul 29, 2013 09:45AM fab1 wrote:

Hi

Congratulations onbtgr twins, would love to see pictures. I too have nit heard anymore news from others just assumed everyone busy with trying to make it happen before others post thier news. I myself still going through chemo, god willing once done and chemo out my system we can try to get pregnant. I will join thud thread with my attempts once im at that point. However in tgr meantime I do like to hear of how others are getting on. So please post your news girls x

Dx 4/9/2013, DCIS, 3cm, Stage IIA, Grade 3, 1/3 nodes, ER+, HER2- Surgery 5/10/2013 Lumpectomy: Right; Lymph node removal: Right, Sentinel Chemotherapy 7/1/2013 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxotere (docetaxel)

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