Just diagnosed, 20 weeks pregnant

SkiChick86

Hi everyone,

I just received word today that I have breast cancer. I am 30 years old and pregnant with my second child. I don't have a lot of information as the full pathology report wasn't in when my OB called. However, I do know that it is grade 3 and it has spread to at least one lymph node (they couldn't do a sentinel biopsy because the dye isn't compatible with pregnancy but they did an ultrasound and found one lymph node that had some calcifications and they biopsied that one). My mom had ER+ breast cancer and I am assuming that this cancer is also ER+ because it has really blown up with my pregnancy. I also won't know how extensive this cancer is until they do surgery and can look at the other lymph nodes. None of my lymph nodes are swollen so I am really, really hoping that means the cancer hasn't really spread too far into my lymph nodes.

I have an appointment with a breast surgeon on Tuesday and have an appointment lined up with an oncologist who specializes in treating breast cancer in young women the following Tuesday. I am also hoping to have an appointment scheduled with a high-risk OB sometime next week. If anyone has any thoughts or ideas on navigating all of this I would really appreciate it. In the meantime, I am so thankful already for all of the information on this forum.

Flower68

I am sorry that you have received the news but not matter what we will be here for you and praying for you.

Hopeful82014

I'm sorry. I don't have any experience with treatment during pregnancy but am sending lots of support and hopes that your treatment will go smoothly and be as gentle as possible on both you and your baby - and all your family.

PS - You should probably ask about the possibility of genetic testing, since you're so young and your mother had breast cancer as well. Knowledge is power.

SkiChick86

Thanks for the responses ladies, I really appreciate the support. Hoepful8201, the doctor's office I talked to yesterday did discuss having a geneticist consult. However, my mom already had testing for BRCA 1 and 2 and she was negative for both. There is no breast cancer on my dad's side so I am likely negative as well. It can't hurt to be tested though, especially because I got this so much earlier than my mom.

stephincanada

Hi SkiChick,

I just listened to an episode of a radio show called "Stupid Cancer" (which is available as a free podcast on iTunes) in which two women who were diagnosed with cancer while pregnant were interviewed. Thought I would mention it in case you are interested in hearing their stories. (It is episode number 406 and is called "Pregnant with Cancer".

I am so, so sorry that you are dealing with this dreaded diagnosis during what should be such a happy time in your life. It sucks beyond belief.

Sending you lots of love and support....

lekker

Sorry you're here! I was following your posts as you went through testing and I was really hoping you'd get good news. You can search these boards to find members who've dealt with BC while pregnant. Then you can try to private message them to build up a support team who really understand your situation. As far as genetic testing goes, it might be worthwhile to at least have a consult with a licensed genetic counselor to talk about options. There are more known harmful mutations out there than just BRCA 1 and 2. I had 40 different genes tested 4 years ago (the Broca panel from the University of Washington)

SkiChick86

Stephincanada that sounds great! I have really appreciated hearing other peoples stories. I thought I might be the only person to ever be diagnosed while 30 and pregnant, but it is helping to hear I'm not alone.

Lekker, that is good to know. My mom just got to town and she brought all her testing info from when she went through this 10 years ago. I will definitely ask for as much testing as possible.

Additionally, I'm wondering if those of you who have been through this know anything about the likelihood of a stage 4 diagnosis. I don't think it's very likely but that is my biggest fear right now. I have no reason to think it has metastasized beyond one or two lymph nodes (none were swollen on the ultrasound, one had some calcifications and they biopsied it and it was possible) but since they can't do the sentinel biopsy during pregnancy I am worried they didn't get the sentinel and it's in all of them. I may be a bit paranoid at the moment so any data or background on the likelihood of stage 4 cancer at this point. I really appreciate everyone's support!

lekker

It's estimated that 6% to 10% of breast cancer patients present as metastatic at initial diagnosis (de novo) so it is pretty rare. I know that it is very difficult not to think the worst, but try not to get ahead of yourself. The early days of diagnosis when you don't have a treatment plan in place are the worst. It seems like it takes forever to get test results only to feel like you have to make immediate decisions - the ultimate case of "hurry up and wait". Your situation is made all the more stressful by your pregnancy. Find a medical team that you really trust and let them guide you through the process. And keep coming back for support here! We are on your side. (Edited many times because my keyboard kept changing that last sentence.).

BG46TN

I'm so sorry to hear your diagnosis...I also read your posts earlier in the worried forum....

My best friends sister was diagnosed with a different type of cancer when she was pg and she is now in remission with a beautiful 2 year old little girl! Medicine has come so far these days, trust your doctors and they will get you through this!!

definitely have your mom and you get tested for more then just the BRCA gene. My mom had bc 30 years ago (and is alive and well at 84 now) my sister had it years ago....(also a survivor) when she was diagnosed my other sisters and I all got tested for the brca gene...we were all negative...well now that I am diagnosed, I did a full panel genetic test and came to find I have the BARD1 gene...she went back and got tested for that one and found she has it too. My other sisters are in the process of being tested so they can choose if they want to do something preventative or more extreme screenings. Knowledge is power!

Keep us updated!! ((hugs)) You will beat this!!

lintrollerderby

Hi SkiChick,

I replied on your other thread and I'm so sorry to hear of your diagnosis.

While hormone receptor-positve breast cancers are more common, it is not uncommon for pregnancy-associated breast cancer (PABC) to be Triple Negative (TN) or even sometimes hormone receptor-negative and HER2+. As far as TN, since it's a diagnosis of exclusion, meaning that it's negative for estrogen receptors (ER), progesterone receptors (PR), and lacks an abundance of HER2/neu, it's diagnosed based on what it's lacking rather than by what is fueling it. There's research that is looking into other receptors such as prolactin (PRLR) and androgen (AR) and some researchers suspect that prolactin receptors play a pivotal role in PABC. All that to say that while you very well may have an ER+ tumor, please don't be surprised or discouraged if it isn't.

As for genetic testing, I agree with others that you should be tested. Despite your mom's negative BRCA result, it's still a good idea to go ahead and test using a multi-gene panel. If there's a mutation present, it could be BRCA or one of the lesser-known mutations that is indicated in breast cancer risk. For clarity, everyone has these genes, the risk is elevated when a mutation is present and the gene can't function the way that it is intended to. I have a BRCA mutation and there was no history of breast cancer in my family when I was diagnosed with TN at age 34. Turns out, it was inherited from my Dad. He died of pancreatic cancer and was from a small, male-dominated family, so the mutation was able to hide quite effectively. There are several cancers that are thought to be caused by these genetic mutations and many people only think of breast cancer--I know I did and so did many other people who were later found to have one. So if any cancer in your family is present, a genetic counselor can guide you in the right direction as far as testing.

I know this is all so difficult to endure and take in.

Best of luck.

Anonymous

You've gotten some great advice above from wonderful women....so sorry you have to be here, I hate BC and having it, but honestly hate hearing about younger women and prego on top. Just not fair. I was on the August Chemo 2016 board with a group of women and one was younger and pregnant and getting chemo. If you sift through that board you'll find her- only thing is she hasn't posted in a while (I think she had the baby back in November so I'm sure busy!). She had a great positive attitude, was dealing with chemo, pregnancy and going to work! She was amazing...might be worth trying to connect. Wishing you the best...one step at a time (coming from someone who keeps trying to jump ahead herself lol).

SkiChick86

Thank you everyone for your thoughts and advice. Lekker, you are absolutely right that the waiting is terrible. I know I will feel much better when I have a plan in place and a better idea of how serious this is. BG46TN, I appreciate hearing about your friend. I hate that any pregnant woman (or really, any woman) has to go through this, but it does help hearing success stories from other people. Also, it is good to know that there are additional genes that can be tested. When my mom had her diagnosis 10 years ago they only tested for BRCA. My dad died two years ago of a very weird and rare cancer so it is certainly possible that I got something from him. I am already scheduled to meet with a genetic counselor next week. Lintrollerderby, I am very much hoping that my cancer is ER+, but it is good to know it may not be. My mom's was ER+ and PR+ so I have a good idea of what that treatment may look like which is probably fueling my hope that it is similar to hers. Ajbclan, thanks, I hate it too! I will try to find the woman from your board, I really apprecaite the tip.

lintrollerderby

I also hope that your results show ER+/PR+ as that opens up more treatment options for you. You very well may be, I just wanted you to be aware that you might not be and to make sure you were prepared for any result that they may give you.

As I mentioned, I'm very glad you're going to the University of Colorado (CU Anschutz). I really can't stress enough the importance of the NCI-designated Comprehensive Cancer Center (CCC) status that they have. I live in the Lakewood/Littleton area now, but didn't live here while I was going through treatment. I'm from Florida and went to the NCI-designated CCC there in Tampa and it was an amazing experience and I loved my team. I have seen the MOs and surgeons at CU Anschutz since moving here and they're wonderful.

SkiChick86

Lintrollerderby, I definitely appreciate you letting me know there's no guarantee that it will be ER+/PR+. I knew that, but was kind of assuming and I agree it is much better to be prepared and pleasantly surprised than unprepared and blindsided. It is good to see you are doing well even with a TN diagnosis. It's also good to hear your strong endorsement of the University. When I got my initial tentative diagnosis (at Lutheran) the nurse told me that CU would be the best place for treatment. I've since found a doctor there who specializes in young women with breast cancer and who has experience treating pregnant patients, so I feel good about my choice in doctor. Unfortunately I have to wait a week to be seen there, but my hope is once I am seen things can move a bit faster (the waiting truly is horrible).

lekker

That's awesome that you'll be treated at CU. They seem to be one of the few centers that specifically research Pregnancy Associated Breast Cancer. I hope you have friends and family who can support you in the coming months. It's hard for a lot of us to ask for help but do it if you can - make it as easy on you and your family as you can. Meals, cleaning, errands, helping take care of your child, taking you for pampering sessions - whatever might make you feel a little better. Keep us posted!