Doctor just said it's cancer
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Update: saw my oncologist yesterday for the first time. CT and bone scan are clear. HER2- and borderline stage 2/3 due to discrepancies in tumor measurements. Will know more after surgery, I assume. She did an exam and told me the lymph nodes I've been feeling throughout my body are "normal". I guess she's the expert.
They want me to start AC chemo next Thursday, every other week for two months (4 treatments), then tte same for Taxol. I read that AC can cause heart issues and failure. Since my mother's mother's side has a history of heart issues (mom hot a pacemaker last summer at 59), should they be running tests to make sure I'll be okay?
With lobular cancer, I've also read that sometimes it's not responsive to chemo. How should I expect to be monitored for progress over the next 4 months?
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SaraJay, in the center I am being treated in Quebec, MUHC, I was told heart tests are mandatory before AC treatment for everyone. I was required to do MUGA test before starting, and I have been told I need to repeat it every 3 months for a year (because I will also be on Herceptin which might cause heart issues)
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I had an echocardiogram prior to chemo. Before each chemo infusion, my bloodwork was checked to make sure counts were sufficient enough to receive the infusion. My vital signs were monitored during each infusion session. Unless there was a specific issue, no other tests or scans were ordered by my MO during the chemo phase. The process was pretty much cut-and-dried.
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SaraJay, I had an echo & a 12 lead 1 min EKG before starting AC. I'm pretty sure they want it as baseline for everyone. I expect you'll get an appointment call for that.
Are you going to be treated at Fraser valley or Vancouver? I'm in the chemo room at Fraser Valley every 3 weeks.
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Hi Moth!
I'm being treated at the Surrey centre.
Im going to call them shortly and inquire about the heart stuff, as I'm really nervous. I'm also reconsidering my decision of doing 4 doses instead of 6. Maybe 6 would be easier on my system?
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I had a MUGA before a/c. When I told my longtime cardiologist that, he snorted and said why didn’t they just do an echocardiogram? Idk, just going along with what MO wanted.
I’m 8 years out from that, no cardio issues from the a/c.
But I do suggest you ask for a port before chemo. Red devil is hard on your veins and it just makes the whole thing easier to deal with. I still have mine, you don’t have to keep it forever like me.
Dr Google is NOT your friend. For the most part, all it does is scare you to pieces, and has a LOT of wrong information. You will see your MO frequently during rx, and if you have questions or problems someone is available to help
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hi SaraJay, real sorry to read of your diagnosis but I think it’s very good that you’ve been able to get your treatment plan going fairly quick. All the waiting (and researching while waiting) is the hardest part! Now time to focus on taking care of yourself. Sorry I don’t have any good relative advice, as I am just starting out on this “journey” (honestly hate that phrasing!) too. Be well.
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hey coool! Yeah I'm going to Surrey too so might see you, depending on our chemo times
(though omg it's hard to recognize anyone with our masks on lol. btw, we hardly ever do ports here. I *finally* got one last August, after buckets and buckets of chemo & really because I insisted. The chemo room nurses at Surrey are awesome at getting those iv's in.
re the AC dosing - I was scheduled to do the dose dense 4 in 2018 but had to go on the other schedule as I kept getting sick (like needing to be hospitalized sick because I'm a fragile princess lol) so we dropped it to a longer sched. Honestly, if you *can* handle the dose dense, I'd try it. I think they don't prescribe it if they don't think it's an appropriate goal & you can always change schedules if you need it. I don't know if there's any data about dd being worse for heart than regular dosing. Join the monthly chemo thread to get ready but just try to not worry. It will all work out
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I'd love to meet you!
Thank you for helping ease my mind a bit. I spoke with my oncologist yesterday and demanded an echocardiogram. The only way we could make it work would be in a few weeks.
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Hi SaraJay. I wanted to let you know that my mom was diagnosed with ILC in 1998 at the age of 58 (ER/PR positive). She had a 7cm tumour and 13 positive lymph nodes. She was staged at 3c. She chose a double mastectomy and did chemo (different than mine) and radiation. She did try Tamoxifen but couldn't handle the side effects. This past August, my mom celebrated her 80th birthday. She hasn't had a recurrence or metastasis and is quite healthy though she's had other, non-related issues.
As you can see, I've been through my own BC diagnosis and treatment. It can be challenging at first but it does get better. Thinking about you and hoping for great outcomes
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Thank you for the uplifting story of your mom! I need to hear more stories like this.
I start chemo next Thursday (AC then Taxol).
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SaraJay, everyone's different. My chemo was TAC (taxotere, adriamycin, cytoxan) and I did fine. I worked full time and took only a couple of days off each round, which I really didn't need to do. I had an echocardiogram before the whole circus started and my heart has no issues. With the exception of my wonky shoulder and crows feet, neither of which I can blame on cancer, I'm great. It'll be 10 years this fall.
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Hi SaraJay
I was diagnosed with ILC in 2010. I had surgery, chemo, radiation and have been taking hormone suppressing medication since 2011. It was a very difficult time but I have had no long term problems.
Wishing you well with your treatments. Take care of yourself and keep connected to this site. It is the best!
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SaraJay, I don’t recall getting a MUGA before chemo. I was basically rushed into chemo - saw him on a Friday and started chemo on the Monday. I didn’t have any issues with my heart at all. When I started Herceptjn, I had regular tests to make sure all was well.
One of the things I would do differently is that I would get a port. I had 8 chemo infusions and 18 Herceptin infusions. And there are all the other pokes that could have been avoided. I managed ok without one as I have good veins but that was a little much for my right arm to bear. I couldn’t use my left arm because of my mastectomy.Good luck with treatment. We’re rooting for you
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Today wasn't too bad. Ive been feeling like I'm hungover for the past 8 hours, but nothing unmanageable. I got my echocardiogram on Tuesday and the report came in this morning. I was advised 10 minutes before my chemo that it showed normal function, which helped my anxiety a bit.
I've consumed so much water today, which might be helping with side effects (🤞). I hope to get some quality sleep tonight. Considering taking anti-nausea drugs before bed? Would suck to be surprised by nausea.
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SaraJay, definitely take whatever you were prescribed. I was permitted gravol on top of all the other meds which worked well for me in evening as it makes me sleepy too . Def don't want surprise nausea. Hope you continue to feel good!
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