I’m a recent Breast Cancer survivor (double mastectomy/finished chemo 1-2-19/radiation complete 3/4/19). Yay!
I’m also BRCA2 positive. Nearly 3 weeks ago I began having symptoms similar to when I used to suffer with ovarian cysts. I theorized that my reproductive system was “coming alive” after being suppressed by chemo. I had no idea that many of my symptoms were similar to ovarian cancer until I met with a Gynocological Oncologist last week for a consult, purely based on my BRCA2 risks. Initial blood tests done on Thursday show my CA125 level as 17.8. An ultrasound is scheduled for this Thursday.
I’m telling myself that it’s crazy to think I’d be diagnosed with ovarian cancer only weeks out of finishing breast cancer treatment. Right?
Thanks in advance for any words of wisdom.
**I should note that my uterus & cervix were removed 6 years ago due to fibroid tumors. So that’s not the cause of my bloating & heaviness in my pelvis.
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Mom_with_Nine_Lives
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If there is one thing I have learned about Ovarian Cancer and Cancer in general is that it is a two year old with a constant temper tantrum. You get one fit taken care of and it throws another soon afterward. If it is Ovarian Cancer your ovaries will probably be removed and you will start another round of chemo. Just stay positive and fight like hell! Remember all of us have your back. I am praying for you!
Thank you so much for replying. I appreciate the support. At MD Anderson now for a couple of follow ups post breast cancer treatment/surgery. I’ll have my transvaginal ultrasound today at 2pm. I’m cautiously optimistic about it but my poor husband looks like he’s being forced to throw his wife in front of a firing squad. But, in all fairness, I would be the same way if the roles were reversed. I’ll update when I get results!
Well... I had the ultra sounds (traditional & vaginal). The tech didn’t say anything about what she saw; only that she sent it to the radiologist who would read it then send results to the doctor who would then call me. I asked her, “so you didn’t see anything alarming right? It’s ok if I leave here & begin my 3 1/2 hour drive back home?” She smiled & repeated that she sent images to radiologist who will send results to doctor. Uummm. Ok. So I’m pretty sure if there was something that needed to be addressed in the imaging, they would have asked me to wait. I’m gonna stick with that. It makes me feel better.
I’ll update when I get actual results. Thank y’all again for the support!
Mom9lives, I am a BRCA negative 2006 breast cancer survivor diagnosed with OC in 2015. I had both transvaginal and abdominal ultrasound which did NOT pick up my OC. I also had colonoscopy, endoscopy, cytoscopy-- none of which can detect OC. Only CT/PT scan can find it. Do not rely on ultrasound!
I have no words of wisdom. Just hoping this is not true for you. I'm sure you will find out soon enough. I also have BRCA2 and I'm being treated with Olaparib, a parp-inhibitor. If, in fact, you do have ovarian cancer, be sure to discuss this option. It is so much better than chemo.
I actually just had a scare of my own, but in reverse. Just finished chemo for OC, went for my annual mammogram, and they “saw something...!” Of course I panicked, but I’m now my best health advocate, so I followed up with more testing and thankfully it turned out to be nothing to worry about. I say this bc a CA125 of 17.5 is actually below what is considered ok by OC standards. Anything under 35 is considered good, so even if you are dealing with something, your numbers seem relatively low at this point, which could mean an early catch, and ultimately good news. The CA125 is also notoriously known to fluctuate due to General illnesses, and random infections too, so stay hopeful! Either way, you’ve got this!
I'm so sorry to hear about your possible ovarian cancer. I too am brca positive. I had breast and then 6yrs later ovarian cancer. It usually starts in the falupion tubes.a full hysterectomy can prevent the cancer being brca positive.
Not sure what kind of breast cancer you had, but lobular breast cancer (15% of all breast cancers) can spread to the ovaries and abdomen. It may not show on scans due to how the cell of lobular breast cancer form (not a lump but in sheets). Hope this is not the case. Low CA125 is a good sign. Good luck.
I would suggest making sure that your breast oncologist knows of your symptoms, and mention that you know ILC can spread to the ovaries and GI tract. I would also tell your gyn onc that it can spread there. Don't assume they will think about it on their own. You want them both paying attention because if it did turn out to be something, the treatments are very different. You might find the Lobular Breast Cancer Alliance helpful for more info about ILC and links to other resources lobularbreastcancer.org I had ILC and was later dx with fallopian tube cancer (no BRCA). Being a survivor of ILC means a lot of self advocacy in your health care.
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