Diagnosed during Pregnancy

lisa_loves_alice

There was some discussion on another thread about creating a tagged post about breast cancer diagnosis during pregnancy.

I was diagnosed last August when I was 12 weeks pregnant.  I went through surgery (a lumpectomy) when I was 15 weeks pregnant and completed four cycles of AC starting at 20 weeks.  When I finished AC at 32 weeks, I chose to wait and deliver the baby at term before continuing with treatment.  

My daughter was born perfectly healthy a few days before her due date in March 2011.  She is an absolute joy and has made every minute of the rest of my treatment easier, despite how tired I was.

I had a difficult labor related to the baby's position (she was posterior, and we needed a vacuum assist after four hours of pushing) so my team decided to give me three weeks to recover.  At that point, I started 12 weekly doses of taxol with herceptin.  I will continue to do herceptin every three weeks for a year.

I then did 33 days of radiation.  Halfway through radiation I started daily tamoxifen.

I had to stop breastfeeding my daughter when starting chemo.  Had I just done chemo, I would have "pumped and dumped" for three months, as crazy as that sounds!  But Herceptin precludes breastfeeding for over a year.  So, I use donated breast milk for my daughter, which I get directly from other women, through friends and through two organizations -- Human Milk for Human Babies and Milkshare.  Today my baby is 6.5 months old and she has only ever been fed breastmilk (well, and now starting some solids).

There is an organization, Hope for Two the Pregnant with Cancer Network that provides support to women diagnosed with cancer during their pregnancies.  They have a maternal fetal medicine doctor, Dr. Elyce Cardonick, who runs a registry of women in this situation and who can provide medical advice to patients.

When I was diagnosed, I was so scared and devastated.  But then I started hearing from women who had been through this, and it gave me hope. 

If anyone finds themselves in this situation, please feel free to contact me.  

I know there are other women here who have been through this and I hope they will chime in with their stories too!

livinglarge

I am so happy to read your story.  I read another thread the other day of a young woman who is expecting at the same time she was just Dx.  She was really worried and was looking for someone in this position.  I wish I could find her thread to direct her to you.  She was struggling with an awfully hard decision and hearing your story would really help her out.  

I hope she finds you. 

jenrio

Thanks for adding the thread!  My story is ongoing:

I was dxed 8/29/2011 (28 weeks pregnant) and had lumpectomy 9/2/2011. Tumor was 25mm, grade III. sentinol lymph node shows isolated tumor cells, node0 for now. ER+ 46%, PR+ 86%. HER2 status - (Oncotype DX score=29, and my Her2 score on that report is 7.6 < the positive cutoff at 10).

My big question was: how soon should i c-section my baby boy out (I had c-section before)?

Because my tumor is hormone sensitive, intuitive, the sooner the better for me. But the baby will probably suffer more health issues the earlier he's out.

So if there's a way to check the metastatic status, it will help me make this difficult decision.

Updates: Chemo started ACx1 on 9/22/2011 (31.5 week pregnant). Will start AC dose 2 at 34.5 gestational weeks. Hope my baby will stay put till 38 weeks.

My biggest concern as a pregnant mother newly dxed is:

1.  What is my real stage?   My node is n0, but they did find tumor cells in them.  My grade is 9/9 with lymph vascular invasion.   my oncotype Score is 29, borderline high.    As a preggy, I can't do MRI with contrast, PET/CT. 

2.  Does AC chemo hurts the baby?  From Googling, Adriamacin doesn't cross placenta in large amount,  Cytoxan do cross placenta and blood brain barrier, but after 5th month, baby's neurons are no longer dividing like mad, so probably are not affected as much by Cytoxan (which is also short acting and quickly eliminated).   

3.  Because I had a C-section before, will need a C-section again.   Would the interruption 5-6 week interval in AC chemo (3-4 weeks before C-section, 2 week after C-section) reduce chemo's effectiveness?   I found no paper addressing this.  

4.  How does waiting for chemo after delivery (say 11 weeks) increase my metastatic risk?   Because of my tumor's high grade(fast doubling time), the mets risk is estimated by 1 mathematical model at 0.057%*11*7=4%.     This is just 1 paper and 1 math model.  It could be wrong, but I have no other way of estimating it. 

Every pregnant woman's timeline is different and her decision is going to be more difficult or less.   But always it's complicated decision made in blind.   Personally once I made the decision, I feel much better.   I can't get 100% right, but 80% right is good enough, the rest is in God's hand.

Hopingforthebest33

Hi I am going through this right now , and Lisa you were one of my many stories that helped me make the decision I had to make. I am so glad that I am going to have a baby and that I have many people on here that is making my life so much easier. I am now 11 weeks pregnant , I am receiving really good care from my obstetrician where I get the chance to follow my pregnancy through ultrasound every two weeks and see how baby is doing, which is great because it gives me hope and something to look forward too doing every few weeks. I am recovering from surgery , and waiting on my results and then I assume I will be starting some sort of treatment afterwards, chemo I presume.

SheriEH

Hi everybody,

 My name is Sheri Gunzenberger, and I'm the Community Manager at Everydayhealth.com.

We are looking to create a real-woman profile piece on what it's like to be diagnosed with breast cancer at a young age, specifically while in the early stages of pregnancy. I read through your posts, and am inspire by your strength and courage. We'd love to feature any of you who are willing in an article on our website.

Please email me personally asap if you would like to be a part of our story.

 sgunzenberger@everydayhealthinc.com

Thanks so much,
Sheri

lisa_loves_alice

Jen and Hoping, I hope you're both doing well.  I'm going on two months out from radiation and feeling better and better.  I don't think about cancer too often, even with "pinktober" going on.  Alice is growing like a weed.  She learned to crawl last week and is pulling herself up and starting to cruise along furniture.  We are not ready for this!    But of course we're thrilled and proud.  The hardest thing these days is being back to work and missing my baby.  Regular people stuff.  Life is good.

Hoping, those appointments were so comforting to me.  Once the baby started moving I felt so much better, too, because I felt like I could tell she was okay.

Hopingforthebest33

Hi Lisa, things are ok, meet with the oncologist and found out Im triple negative which was a little frustrating , I could really use a break ! lol I will be having chemo and should be starting soon, going shopping for wigs tomorrow and hopefully that will make me feel better! THat is so great about Alice , I can't wait till that age , but don't get me wrong I'm not going to rush it!

lisa_loves_alice

This study followed babies exposed to chemo in utero for a long period (up to 18 years) and found no evidence of cognitive or heart problems.  The study did note that many babies of moms dx'd during pregnancy were born prematurely, and this did account for some medical issues with the babies.

 http://www.pregnantwithcancer.org/full_story.php?recordID=25

Hopingforthebest33

Thanks that was interesting article. I heard pre mature babies can happen, but sure makes you feel better, I feel very confident that I am doing the right thing , and feel good that baby will be fine.

evyl78

Hi I just wanted to share that even though this is a long hard road you can do it!  I was dx while pregnant in Oct. 2007 I was 26 or 27 weeks I honestly don't remember.  My tumor was a very aggressive tumor that was growing fast.  I did one round of a/c before finding another lump in the same breast.  So on Nov. 11, 2007 I had my son Lennon at 32 weeks.  I can tell you that today Lennon is a typical little boy always getting into something!  Enjoy them while they are babies!

If you ladies have any questions or just want to hear from soneone who gets please send me a pm

Hope, Jen & Lisa sending you all lots of love to you and your little bundle of joys!

Much love

Evy

Hopingforthebest33

Thanks, Evy I am doing well and feeling strong , started chemo a month ago, five more treatments to go!

ellebellkell

I'm so glad I came across all of your stories! Its comforting that there was a positive outcome for you and your little ones. I'm currently going through this process now and I'm really afraid that I will have to have a very early c-section (possibly at 28 weeks). I'm going to have surgery next week and the next week I will know my options. But all your stories def gave me a positive reinforcement that I needed

jenrio

Just want to share my new blog documenting my experiences.   Hope it will be helpful for any women newly dx with aggressive cancer during pregnancy

http://killerboob.blogspot.com/ 

Hopingforthebest33

Hi just to let everyone know , I had my baby boy two days ago. He is two months premature but doing great. I managed to do four rounds of chemo before he was born, and will be finishing the last three in the next couple of months. He is beautiful and Im so glad that I did what I did, and don't regret a moment of it, it is possible to have a baby and cancer at the same time !

overwhelmedmom

Hi ladies,

I just wanted to add another positive story.  I was diagnosed with breast cancer while 7 months pregnant. Scariest time of my life with a lot of challenging decisions, but with a great outcome. I had a mastectomy and 3 rounds of chemo (ac) while pregnant and my son was born healthy and happy and with way more hair than his mommy

I also wanted to share this news story below. 

I'd be happy to share more if anyone has questions, feel free to pm me.

Hope you ladies are all doing well!! 

Http://www.cbc.ca/news/health/story/2012/02/10/pregnancy-chemotherapy.html

Jejik

Has anyone used herceptin while pregnant? I would be interested in finding out more about your experience. I am pregnant with my first child and have been NED for less than a year. Was on herceptin before finding out I was pregnant, and cannot decide whether to resume it at some point during third trimester.

jenrio

Just poking in to say hi.   My baby is almost 9 months now.   He's wonderful!   

Mumtobe

Hi ladies,

 I am 31 wks pregnant and have just finished my 4th round of AC. Booked in for MX on 24th Sept and will be given 6 wks to recover from surgery which takes me to my due date and then starting on taxanes after that. My nurse has told me that the doctors will consider me cancer free once surgery has been completed. While this is very positive I'm not sure I'll ever consider myself cancer free!! I even hate the idea of having to wait 6 wks to recover but I cannot have the taxanes while pregnant and getting to full term gives my baby every fighting chance. Has anyone had to wait 6 wks before beginning their next treatment after surgery?

CaroHi

Hi Mumtobe, my surgery was first at week 16th. of my pregnancy (then waited a month before starting with chemo), I had 4 rounds of AC, waited 3 weeks and delivered my baby at week 34 and 6 days later started with Taxol and Herceptin.  My baby will be 2 years old on October 22nd. and she is a healthy happy toddler.  I hope everything goes fine!

Hopingforthebest33

Hi, I had my mastectomy at 14 weeks pregnant, then I started chemo in my second trimester. I had my beautiful baby boy at 31 weeks. I then started my last four rounds of chemo which was  taxol 6 weeks later.  I also just finished having 25 rounds of radiation and am now official cancer free, with a beautiful 6 month old  who is so big and healthy. You will do great!

Mumtobe

Thank you so much ladies, and so delighted your beautiful babies are doing so well! It's so hard because you want to give yourself and your baby the greatest fighting chance. I'm looking forward to my baby being born because I think it will remove a lot of anxiety for us i.e. the thoughts of drugs getting into baby will be gone and just having them there will be so wonderful, can't wait. Also at 32 weeks I am now so uncomfortable - heartburn is not fun!!!

Mumtobe

Hi all, not sure if many people come onto this forum, I really feel I'm the only pregnant woman going through BC at the moment. Anyway I'm just wondering did anybody have an episiotomy during their labour? My onc told me the other day that an episiotomy will delay me getting treatment but I was so sick at the time with mouth sores that I never asked her how long it would delay treatment for. Can anybody shed any light on this?

Hopingforthebest33

Hi, unfortunately I did not have a episotomy as my baby was born two months premature and he was only 3lbs so really wasn't needed. My doctor did not want me to start up on chemo till at least 6 weeks later of giving birth. I know how you feel, I felt the same way, I keep my breast cancer a secret because I was so scared of feeling judged by people. I know can be lonely as no one can relate! Please feel free to message me if you have any concerns . talk soon

Mumtobe

Hi Hoping,

Thanks for your reply. I hope your baby is doing well. I have done 4 rounds of tx so far, am having surgery on Monday and have 6 wks to recover before baby comes. I am just so anxious that if I don't have an uncomplicated delivery then I am delaying treatment even further. A part of me would love to just deliver baby and remove breast in one go but I couldn't imagine any surgeon/doctor agreeing to this. It's a scary time!!

Marlene18

Hi Mumtobe,

I am also expecting in January and was diagnosed in August this year. I have had a lumpectomy and start 4 rounds of AC on October 15. From what I've read, even though there isn't too much research yet, alot of the procedures and treatments for breast cancer have not shown to be harmful to your unborn baby. I know that I wasn't able to get as many tests (MRI dye is an unknown) but from what I understand, the treatment wouldn't likely be different if I was not pregnant. The only different factor for me is that I'll have a break of about a month in between taking AC and Taxol but I have not found a single bit of research on how that ultimately impacts prognosis.

I hope your MX surgery went fine and that you are having an okay recovery. I am the most nervous about my energy levels once the baby is born but for now, I'll just hope that AC during pregnancy is not too bad. Did you have bad SEs? I'm only at 24 weeks so my pregnancy hasn't been too uncomfortable for me yet. 

Mumtobe

Hi Marlene,

Had my surgery two wks ago and have been recovering quite well thank God. Have my pathology report on Thursday so hopefully the 4 rounds of AC have done their job. I was offered a lumpectomy the week before my surgery rather than a MX but I declined and wanted the MX, i don't regret that decision. Honestly AC during pregnancy I found was fine, I was quite tired the first week after chemo but get plenty of rest and drink plenty of water and that'll help. I also found getting out for a walk every day helped. After my 4th bout of AC i got quite ill with a tummy bug, then got mouth ulcers so it was a rough 3 wks, I have heard a few women say that they were quite ill after the 4th bout aswell. Not saying that will happen to you but just get your rest and you'll do great. I am in my 3rd wk of no treatment now and I have to say it is bliss to not be having chemo and my baby is being induced in 2 wks time at 38 wks so with the help of God all will go well for us. Another plus is my hair is beginning to grow back. I still have a long way to go with the treatment process and I pray it will be all worth it to kill this beast. I hope your treatment goes well for you. Remember, eat well, rest and drink your fluids and you won't go too far wrong. Biggest blessings to you and your baby xxx

fight4two

Hi Mumtobe,

I had a second degree tear and started chemo about 3 1/2 weeks after delivery.  My OB/GYN and my oncologist both did not seem too concerned about this timing.  I think my oncologist would have started me earlier if he could have gotten the paperwork approved faster.  It's been a week since my first treatment and I have had some pain and bleeding, but I'm not sure this would have been any different without the chemo.  I had some concerns about starting chemo before being fully healed, but since I was eager to start treatment, I went ahead with their reassurances.

Best of luck with the rest of your pregnancy and treatment.  Its such a blessing and relief once that healthy baby finally arrives

me_myself

Hello to all of you,

First of all I want to mention that I am not an English native speaker, therefore for sure you will find a lot of mistakes in my messages. But hopefully, you will still understand the message

So here is my story with breast cancer in pregnancy:

I discovered a dimple in my right breast when I was about 14 weeks of pregnany.I searched the Internet to find a reason for it - however, I did not search the right thing. All the sites where I searched mentioned that ''a lot of benign breast modifications can appear in pregnancy'- therefore I stayed calm.

However, in April, when I had 19 weeks of pregnancy, I started to worry. The dimple was getting bigger. I went to get an ultrasound- a lump appeared. A little bit more than 2 cm in it's highest diameter.BIRAD 5.

I went to see my OB-gyn,I was sent to an oncologist. Long story short. I had to change the OB-gyn and the first oncologist, since I could not find a chemotherapist willing to do chemo in pregnacy in our national cancer institute.I was very dissapointed, but happily I did not gave up and I searched more.

I found an amasing doctor who lead a whole team - he is also an OB-gyn and surgeon.He sent me to an oncologist who was willing to do chemo in pregnancy (eventhough it was a first time for him- he didn't have a case like this before).I had an ultrasound core nidle biopsy and it was confirmed - IDC, ER+,PR+,Her-.

I started chemo in May- I had 23 weeks of pregancy at that time. 4 round of AC. I tolerated the treatment without any side effects (only hair lost). No improvment was seen after finishing treatment - the tumor appeared to be even a little bigger. However, I was very close to full term pregnancy and I delivered the baby when I was 37 weeks without one day (C-section). During pregnancy, a specialist in risk pregnancies followed the baby development - nothing was wrong. She was growing just like any other baby.

She is a girl - a perfect little girl. She weighted 3,450 kg.APGAR score 9 at one minute, 10 at 5 minutes.

2 weeks after delivery, I started treatment with Taxol. After the 3rd round, it appeared again that no improvment appeared. I had an ultrasound and again a little progression was seen. So we schedule the mastectomy.

I had the mastectomy 2 weeks ago. I just received the pathology report. IDC, 2,8 cm in it's highest dimension. Isolated cancer cells in one lymph node (the rest of 22/23 nodes were clear). This leads me to T2N0 which happily is stage 2A. I think that the standard here is to order more investigations only if lymph nodes are affected.

Unfortunatelly 12 very small lumps were found - with dimensions between 1 and 6 mm. Only the biggest (6mm) was seen on the last ultrasound. None of the others..therefore I am more than happy that I had a mastectomy instead of a lumpectomy.

I do not know what the future will bring us. However I am more than glad that I had this baby, that it was a happy ending story and that I feel that I have great doctors to deal with this case.

I do not know if radiation will be recommended as part of my treatment, but for sure I will be put on Tamoxifen since I have high percentage of hormones receptors (ER 75%, PR 60%)

tgolf

Hi Lisa, my wife has just been diagnosed last week @36y/o 17 weeks during pregnancy.

We are living New Zealand. Feel isolated as no any similar case around. Your story inspired us. We would seek advice from anywhere regarding to this issue. Thanks!

slg76

Tgolf-I just saw your post.  I notice that the thread is a bit old but this is the first time I have come accross it. 

I was dx at 33 y/o while pregnant with my first child.  I'm so very sorry to hear about your wife!  My heart hurts for you both.  But, i hope it helps you to hear that my child and I are both healthy and happy right now. 

I was dx at 25(?) weeks.  I found the lump myself and it grew noticeably in the following two weeks.  One of the things I found most frustrating is that the options for diagnosis are limited when you are pregnant.  It seems to vary by doctor but we could not accurately stage my tumor or check lymph nodes until after my daughter was born.  All I knew was my tumor was large (3 cm) and growing fast.  My husband and I cried and went into a bit of shock for about three days and then it was time to get ourselves together and fight.

I started chemo right away.  I did AC chemo during my third trimester.  I was absolutely scared out about having those chemicals in my body during pregnancy!  As hard as it is to believe, these drugs are not shown to increase birth defects or health problems if given in the third trimester (the second trimester is also considered fairly safe).  I then took a month long break from treatment and delievered my little girl.  We think that Emily was a little smaller than she might have otherwise been but she was also 3 1/2 weeks early.  Who knows if that had anything to do with the cancer.  Emily was, and is, perfectly healthy.  I had no complications during delivery but did take a while to heal afterwards as my body was just tired and my tissues were fragile. 

After Emily was born I did 12 weeks of taxotere.  This drug kicked my butt, and I was hospitalized twice, but I made it through.  Then it was a lumpectomy/lymph node dissection.  Margins came out clear and lymph nodes seem clear as well.  Hooray!  I finished up with a course of radiation.  All in all this is very standard treatment for breast cancer but in a different order since most people do surgery first.  

Being pregnant during treatment was both the scariest and best part of the whole experience.  I was terrified because it now mattered more than ever that I continue to be healthy to raise my child.  On the other hand being pregnant gave me a great distraction and a reason to power through treatment.  

I'm so glad to see you here supporting your wife.  My husband was truly amazing thorugh this whole ordeal.  He shouldered the responsibility of working, taking care of me, and taking care of our newborn.  What a strong man he is!  I know that he went through a terrible journey of his own even though he was not the one who was sick.  Make sure that you and your wife both get the support that you need!!

I am a scientist and have done quite a bit of research on cancer/pregnancy.  I also have an oncologist in the family as well as the two that I visited for my own care so have heard several opinions on the topic.  I am more than happy to point you in the right direction, tell you more about my story, or answer any questions that I can. 

Sending you and your wife my best wishes and hoping for a happy/healthy baby to join you soon! 

grahaad1

Wanted to add my story for those looking for information on pregnancy and breast cancer...

I was diagnosed at 26 weeks pregnant with my second child. I received a right mastectomy approximately 2 weeks after diagnosis and then had 2 rounds of FAC chemo (at 30 and 33 weeks) at MD Anderson in Houston. The OB care I received in Houston was wonderful and they reassured me that the baby was going to be okay. It was still such a nightmare to be dealing with the diagnosis and also worrying about the baby. I was induced at 36 weeks and had my 3rd round of FAC just 4 days later. Our baby girl was over 6 pounds and just perfect! Advice: I pushed for quick time-frames for surgery and resuming chemo as soon as possible after delivery. Get a second opinion if you aren't comfortable with the plan!