Response to neoadjuvant chemo?
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Hey there... checking in to say hello. I've been doing "survivorship" appointments which has resulted in more tests and anxiety! I went for a mammogram on my non-cancerous breast. A benign, fluid filled cysts appears to have reduced in size. They recommended that I have it aspirated which I agreed to. But then the doctors revised that recommendation and I ended up with a core biopsy yesterday. I'm not terribly concerned about this cyst... I've had countless mammograms, MRI's and two PETS's while that cysts has been there. But I am rattled a bit by the experience of waiting on a pathology report.
And also my liver enzymes are elevated. They were high during chemo and I got a full liver workup which was clear. This was a check to make sure that it had resolved now that I've been done with chemo for a while and they were higher than they have ever been! Repeated the labs. Still high. So now I will get a liver scan and a bone scan. I just keep telling myself... I had a clean PET in May!
And finally in survivorship news... I saw a onco-cardiologist who explained my risk of heart damage due to adriamycin. I'll be having a stress test and annual echo's to monitor. All of which I appreciate. She explained that the heart damage shows up immediately for some but for others it can appear over the course of 10-20 years.
I am at a really good NCI hospital where they are incredibly thorough. I appreciate the no stone left unturned approach but it definitely causes a great deal of anxiety!
Mom: Would you PM me the article link that you deleted? I'd like to read it. I'm not sure that I saw an RCB on my post surgical path but I will check!
Also I see that the oophorectomy conversation is still ongoing. I can't say again how happy I was with the decision to get rid of mine. My doctor also explained that they are learning that a lot of ovarian cancers are actually tubal cancers. So my tubes were removed in addition to my ovaries which further reduces my risk of ovarian cancer and gets rid of the estrogen. I would add that to the list of benefits of the surgery over OS. I just couldn't live fretting over every cramp wondering if it was cancer.
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mom of twins please don't apologise. Just hit me hard at a bad time! (waiting for PET results next Monday) Not your fault it's out there and I find plenty of terrifying stuff myself on Google!
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Hammie, good luck on your tests and scans! They are the worst and our minds can run wild. Will be praying for you! And I will PM you the link. And I'm glad you're going to be monitored by a cardiologist and stay on top of heart health.
SSinUK, thanks and I'm sorry it came at a bad time. Praying for great results for you on Monday. The waiting and the anticipation is torture. I will be thinking of you!0 -
Houston- After meeting with a local oncologist and general surgeon I went to Dana Farber (MD Anderson was also a possibility for me, but DF was an easier trip.) I have never regretted that decision. Specifically around surgery, I really wanted to have someone who just does this type of surgery over and over again. I always take the approach of "which way will I have no regrets?" I think if your gut is telling you to go to MD Anderson, you will feel better about it. I don't know enough about skin involvement to say anything about that specific scenario since I didn't have that in my case, but it sounds like just getting the second opinion at this point would help you with a path forward that you feel comfortable with.
Mom- I did appreciate that article a LOT. I have read so much about RCB that is so vague but its actually even scarier, this put some numbers to it, which while scary at least feel like facts. (And good to know that Hormone treatment, etc still make a difference in my case.) It's odd to me that from about 2007-2013 RCB seems to have been a hot topic and well studied, now it seems to have dropped off the radar a bit... yet still is being used by some on pathology. I just wonder how its being used today, plan to ask at my next MO appt. I didn't come up when we reviewed my path report, but I noticed it myself. Even though these articles can be scary, this information I have found helpful in advocating for myself. If you have read the studies and have data, it definitely helps to back up any requests I might have for treatment options or even just information. I tend to find that MO's only give the information they sense you want, if its scarier they don't provide unless asked. I like to have all the information, but I know not everyone is that way. And I totally agree- there is a lot more than this RCB score (and by the way, didn't seem like this study touched on radiation or ovary suppression, etc. which seems to leave out a piece of the stats puzzle.)
Reflect- The ketogenic diet is a more extreme version of Adkins, but yes, definitely similar. But even more carb restrictive. My understanding is that it can be dangerous if you are not working with a dietitian. I hear of it used much more in other types of cancer. My nutritionist at DF has said she has no evidence that it is recommended for breast cancer (of course, that means it hasn't been studied or that the results aren't in yet.) But I know a lot of people using integrative medicine that are going in that direction, my integrative medicine nutritionist asked me if I wanted to consider it. So I have been researching, just can't find much. There was no way I could have managed it on top of chemo anyway, but now that I believe my cancer was not so responsive to chemo, I am definitely exploring other avenues. I also can't lose much weight on Radiation, so need to be careful with diet at the moment and just maintain, so for now just exploring things in my google sessions.
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Hammie how was your recovery from the oophorectomy?
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Hi Meg! I'm glad the article was helpful for you; it's actually the one that my oncologist gleaned the charts from that she provided me related to my recurrence risk. She told me that the RCB index is the best way to determine risk recurrence for those who did neoadjuvant chemo. She said there's obviously a lot of other statistics out there related to prognosis, but a lot of those are related to those who did surgery first.
And I'm like you; I prefer to have all of the information and do my own research. There have been times when my "digging" has scared the crap out of me, but I'm just the type of person who wants to know what I'm dealing with.
As far as diet, an excellent oncologist recommended the Mediterranean diet to me, and apparently there are studies to back it up. Plus I like Mediterranean food--I recently ordered a cookbook from amazon.
I also drink a cup of Brassica green tea a day made by Johns Hopkins and made from broccoli sprouts. I drink the lemon flavor and it's not too bad. Studies have shown that this can help ward off recurrence. Who knows,but I certainly feel better trying to be healthy. But believe me, I have many moments of still eating unhealthy foods, but working on it.
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Fighter: The recovery really was fine. My surgery took a lot longer than expected because I had apparently had an ovarian cyst that ruptured at some point in the past. So there was a lot of scar tissue to clean out on one side, and I think I had a bit more pain that is typical because of that. But I was back at work the next week. After living through a mastectomy this really was a breeze. Everyone talks about the gas that they use to pump up your belly for the surgery causing transferred shoulder pain. I didn't really have that at all. I was uncomfortable for a few days but really it was an easy thing to get over.
I did about 4 months of Zolodex shots while I was recovering from the mastectomy and going through radiation. And having to go back to the infusion center to get the injection was just an emotional link to my cancer that I wanted behind me. I didn't want to live in one-month intervals. I didn't want to fret over whether or not a vacation would hit during the week that I really needed my injection for the next ten years! Plus the injection is no joke. This isn't a little flu shot we are talking about!
I hope some of that helps!
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How's everyone doing? SSinUK, did you get scan results? I've been thinking good thoughts for you.
Busy week for me. Tomorrow go to cardiologist for follow up echo and blood work. Then Zoladex injection on Thursday (yuck), eye exam, and dermatologist! Trying to knock everything out.
Supposed to start Prolia soon, but am waiting until I get a full dental exam, which I have on 11/2. They recommend doing all dental work prior to starting; hope it's nothing major. I hate dentally work!!
I hope all you ladies are doing well. Check in when you can.
And still hoping for more responses about neoadjuvant chemo!
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Not stage III here but did neoadjuvant chemo (TACx6) at stage IV de novo. I had 4 lymph nodes affected and spinal mets as diagnosed by PET/CT. I had residual micromets in 2 nodes although NED with imaging after chemo. These were surgically removed as well as the primary Tumor and left breast. Radiation followed to clean up axilla, chest wall, spine and supraclavicular area. I've been NED since then or almost 8 and a half years!
Good luck with Prolia. I had Zometa for 5 years. I was lucky that I had a full dental workup right before I was diagnosed and could start Zometa with chemo. Your post reminds me I need to see a cardiologist, what with doing adriamycin and radiation on the left side.
I eat mostly a Mediterranean diet and drink lots of tea. I may have overdone it once with the broccoli sprouts as a node started growing on my thyroid. But it's benign and I probably killed off some breast cancer stem cells.
Wishing you lots of luck with all your efforts!
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Hi Everyone- Not stage III at this point but doing neoadjuvant chemo. #4 of 6 tomorrow. I'm trying to follow/understand the RCB discussion- anywhere I can go to for a quick overview? Does your MO do this after chemo, pathology after surgery? I'm confused lOL.
I had an ultrasound last week to see how my masses (4 of them) are responding to the chemo, and so far- 3 of 4 masses have shrunk basically in half (yea!). The initial biopsy in Aug put me at just mild-mod positive for progesterone, but from what I've read that can change after pathology results from surgery. Also those of you that have gone through a mastecomy- I'm going to do BMX with reconstruct- any good links for what I can prep for?!!
Thanks!!
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heidihill that's a very wonderful and inspiring story. May I PM you? I have a dear friend also stage 4 de novo with some similarities to your history, I wouldl love to ask you a couple of things on her behalf?
MomofTwins thank you so much for remembering - I got my results yesterday and they say there is 'no evidence of metabolically active disease' . Giant relief - plus they've agreed to wait four months till the next scan, so I get till February to try and breathe and live.
Thanks for kind wishes.
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SSInUK Great news!
ajbclan Yay for the shrinking tumors! Yes, the RCB is given after your surgery and pathology, it basically indicates through several calculations what the remaining cancer is after chemo. I am not sure if all pathologists include it in their report or not. I just had a BMX almost six weeks ago. Are you doing immediate reconstruction (implants or flap) or are you doing tissue expanders? I had expanders placed so I have some very recent experience with that, but I think its quite different from immediate reconstruction.
Mom_of_twins Ordered my Johns Hopkins tea- I drink green tea anyway, so why not?!? My mom also is a breast cancer survivor so will give her some as well. Should be a fun stocking stuffer, lol.
I started radiation last week, so far so good. I printed off my list of appointments and I cross one off every day, very satisfying. I also got to meet fightergirl711 last week in real life, awesome to connect, hopefully we can meet up again. I have my next oncologist appt next week and my list of questions is long!
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I had a complete response after 6 months of chemo
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Heidihill, so glad you shared your inspiring story! You are amazing!!
ajbclan, RCB (residual cancer burden) is a measurement that is used to assist with determining prognosis after neoadjuvant chemo. The variables are the residual tumor bed size, the percentage cellularity, amount of DCIS, and the number of lymph nodes with size of largest metastasis. It was developed by MD Anderson. Here's a link
https://www.mdanderson.org/for-physicians/clinical...
Also, you can google RCB and you will find some literature on it. Not all labs calculate your RCB; it is done during your surgical pathology analysis. So glad your tumors are shrinking!! That's a great sign! Keep us posted with your progress.
As far as reconstruction, I did direct to implant and have no regrets. Of course it varies from person to person whether that is the logical/best option, but it was one of the best decisions I made. I even had radiation afterwards and my implant held up well. Good luck with everything!
Meg, so glad you ordered the tea! There's literature that says it helps in reducing recurrence, and JH is so reputable. Prefer to drink something that was studied. I hope radiation is going well; before you know it, it will be behind you. And very cool that you met fightergirl!!
Flatnfab, awesome that you had a PCR!! Glad you're doing so well.
I love hearing from all of you wonderful ladies!!
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SSinUK, great news!! So happy for you. You must be so relieved. Waiting for scan results is torture! Now you can exhale for a bit. Yay!
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So glad for your great news SSinUK.
My MO says we will learn how to live with this odd state of affairs. Me--I'm looking at travel deals and oh my there are some amazing trips out there. Azores? Paris & Amsterdam? No more delays, right?
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SSInUK, please feel free to pm me. Congrats on the clean scans!
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It was great meeting you too meg2016! I did the same, crossing off each visit... it is indeed satisfying. You'll be done before you know it!
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reflect I think thats exactly right. Having a trip to plan is definitely a good distraction from worrying about recurrrence or treatments. I am sort of amazed, my plastic surgeon gave me clearance to go bunjee jumping with my tissue expanders in... now I just have to work up the nerve to do it!
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Oh Meg, bungee jumping?? I am so afraid of heights I don't think I could ever do that, but you GO girl. Wow. Me: a barge trip down the Nile. Hiking in Tibet/Nepal/Bhutan. The Smoky Mountains--I've never been there! Dreaming up a list...
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I love the way you girls are thinking!! Call me crazy, but I want to go to Alaska! I've also been promising my girls that we will take them on a Disney cruise (I actually think one of the a Disney cruises goes to Alaska?? Hmmmmm).So that comes first. Expensive, so need to start saving up!!
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New Zealand is the one I am planning (hence the bunjee jumping) and then next on my list? Galapagos I think. Although I really want to do Alaska, too! And a Nile trip. Maybe we can get a group rate.
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Alaska too! I'm in. I've only stopped over en route to Japan but the view from the airport was astonishing. Group rate is a great idea! I've been checking out Travelzoo and there are some amazing prices: ex RT air Boston to the Azores (Portugal) and 4 star hotel, 6 nights, $599. Whaaat? I need to get a new passport, mine's expired.
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Stopping by to share that my scans were yesterday... they were ordered because of elevated liver enzymes. After the bone scan, the radiologist came out and told me all was clear! I was so appreciative!
Still waiting to hear from the liver ultrasound. My anxiety is through the roof. I'm really worried about my liver because I have noticed (or imagined?) that my appetite is considerably reduced from normal. I'm basically a wreck at the moment. Hopefully I'll hear something today.
Getting back to the original topic on this thread... I think it would be much easier to deal with this sort of thing if I felt like I'd had a better response to chemo. I just have a hard time imagining any way that there is NOT a stray cancer cell somewhere in my body. And my cancer was high grade, so I just imagine it getting somewhere and growing out of control very rapidly. In some ways I live my life EXPECTING recurrence. I guess I feel like that will make it a little less scary if it actually happens. But I'm not sure if that is a healthy way to deal with things or not.
I hope you all are having better days than I am.
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Oh Hammie, so happy about your clear bone scan! Praying for good news with the liver ultrasound. I'm sorry you're so scared; waiting for scan results is so difficult. Please let us know.
And I'm with you about the anxiety of not having a great response to chemo (hence, why I started this thread). I feel the same exact way. If I had a PCR, I would have had so much more confidence going forward.
I just pray that the "stray cells" were much more vulnerable than an organized tumor mass. I don't know...but I totally relate. I wish there was more we could do! I would take more chemo in a heartbeat!!
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Hi all, I would like to know if RCB is similar or different from positive margin. Does this also include sentinel lymph nodes taken out during surgery? I don't know about these tests as the BS and the OC doesn't tell me anything. Thanks all so much.
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Hi Houston! RCB includes a measurement of all residual cancer after chemo that is found at surgery. So I imagine any remaining cancer taken later if the margins weren't clear would also be included, but I'm not sure if/how re-excisions would be calculated.
As far as sentinel node biopsy, it would be done if that biopsy was done after chemo. If done before, I don't think they could do a RCB calculation if cancerous nodes were taken before chemo. Hope this makes sense
Anyway, I'm certainly no expert, but this is my understanding.
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Thanks mom of twins, the BS told me he took out three SLN but there's no more tissues left since they were blasted by chemo. Is this false negative what happened to the other SNL and Axillary lymph nodes. BTW, they only biopsied one SNL for staging. Thanks.
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Hammie I have been feeling EXACTLY the same - but it is easier the other side of a good scan. Before I was totally convinced of what they'd see - my back ache was bone mets, stomach ache liver mets, dizziness brain, cough lungs. Soreness in recon recurrence in nodes. How could it not be with all my cancer untouched by both chemo and tamoxifen? But - all clear. For now. Breathe - your mind and imagination are not necessarily your best friends right now. You know appetite could as easily be the stress... Praying for good results for you. Bone scan is a great result so far. Like you - part of me fears its inevitable it will show up again one day. But the doesn't mean it will be today. Today is all. Today can be good. What a horrible tortures we endure (((hug))
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Houston, okay just to clarify, the SN biopsy was after chemo and you had three nodes removed? They only biopsied one and not the other two? I also had very few nodes...they were only able to find 5 with an axillary dissection. They also said I had no fat pad left, and that chemo can destroy nodes.
I was also told thinner people have fewer nodes, but I was also concerned that they only took 5 since most have 20-30. But since I had radiation, I figure it got anything left behind.
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