RCB III - Terrified
Hello! Recently (12/12) I successfully underwent a double mastectomy. I'm healing pretty well and my pain seems to be getting better every day. Today, I had a post op appointment with my Medical Oncologist that has made me both sad and scared. We went over my post surgery pathology and there were more infected lymph nodes than initially thought (for context, I had chemo prior to surgery). I was initially diagnosed Stage 3, Grade 1, ++-. Upon diagnosis, doctors suspected around 1-3 lymph nodes involved. Post surgery, 5 lymph nodes are involved - all with macrometasteses and around 2mm of extranodal extension. Additionally, I received a Residual Cancer Burden (RCB) score of 3. When I asked the doctor about my RCB score, she explained that it references the amount of cancer still present at surgery. While I understand all of this, I am really freaked out about the RCB score and my lymph nodes. Everything that I have read says that an RCB score of 3 is a negative prognostic factor. Not to mention the macrometasteses in my lymph nodes. My doctor told me that I did have a response to chemo, but I guess that I thought I was expecting some sort of miracle. I am so terrified about my RCB score. Now I can't help but think that I did surgery, cancer, and future radiation just for this stupid disease to come back. I hate this so much. I hate that I will have to live the rest of my life on the edge. I was diagnosed at 35, currently 36 and I just feel like I have been robbed of my life. I haven't had a chance to be married or have children yet and I feel like I can't plan for the future. I just want to live to be an old lady. Are there people with high RCB scores that go on to live a recurrence free life? It feels like I am just sitting here waiting for recurrence.
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It is hard to not worry about the cancer recurring not matter what your diagnosis and chance of recurrence is. I feel like there are so many variables that are looked at to predict your odds of recurrence & the RCB is just one of them. Even when the odds are higher, it does not mean we will have a recurrence.
There are more things they do today to lower the risk of recurrence. (Some they have just started in the past few years- so there are not long term stats out yet about their success) I am taking Anastrazole (an estrogen blocker), having a Zometa infusion every 6 months for 2 years and taking Verzenio for 2 years - all to reduce my risk of recurrence. All of these have had good results in lowering risk. I am also working out, eating healthy and avoiding alcohol - to reduce my risk.
It is hard to not worry about the cancer coming back, but I am trying my hardest to not worry about it and live my life. I am also trying to do whatever I can to prevent it from coming back- like taking those medications and exercising, etc.
I love to read the stories on here of all the long term survivors, they give me a lot of hope.
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When I was diagnosed over 10 years now, I was stage 3 with two macrometastisized nodes and two micro. We didn't have this RCB thing you talk of, so who knows what mine would be. We also didn't have the ability to take Verzenio which from what I understand is very affective reducing the risk of recurrence . You have done all you can do, so just make sure you take your meds, and take care of your health. It's all any of us can do.
Side note: My MO told me at my last visit that she thinks I am going "to be just fine". That's a huge difference from 3/31/14. Stay positive!
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@ann5631 thank you for reminding me that there are many variables considered when it comes to recurrence, not just the RCB score. When I saw that score, it was just so shocking, I forgot about everything else. Excuse my ignorance, would you mind sharing what your Zometa infusions are for? My doctor hasn't mentioned these to me.
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@homemom Thanks so much for responding. I haven't met many stage III, Grade 1 people. It seems like we aren't as common. The fact that you are 10 years out gives me a lot of hope for my future. How long did your doctors have you take medication after diagnosis? Did you have a complete response after chemo?
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zometa is a bisphosphonate medication. I get an infusion every 6 months for 2 years. The infusion takes about 15 min. It is to help keep my bones strong & to help prevent bone metastases. The estrogen blocker I am on can cause some bone issues. Thankfully my bone density is very good. I recently had a dexa scan & will have another in 2 years.
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Search in breast cancer.org for "Stage III Cancer survivors" here in the community and the boards will pop up. We really aren't that scarce.
I did take Arimedix for 10 years, and since that depletes your bones, I ended up with osteopenia, so I get a Prolia shot every six months. I'll get one or two more before I stop. I'm due for a Dexa scan this summer, and we'll decide then. That's about it!
You can see from my signature that we threw the book at it in 2014. Wish I was able to take Verzenio, but if it did come back, that wouldn't bee off the table as a first choice of attack
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