IBC lounge: roll call, support and just a good place to hang out
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TravelText--I was advised in no uncertain terms by the Surgical Oncologist that 2 levels of lymph nodes will be removed (dissected) from my axilla. At this point, they are only aware of a single node that is cancerous but as you know, once they open me up it can turn out to be a totally different ballgame. At any rate, their standard is to remove the two levels of nodes.
Here is the most recent IBC "International Consensus Standard of Care" document, in case anyone is interested. LINK
From that document, quote... "In addition, the recommendation for the use of sentinel lymph node dissection in patients with clinically node-positive disease treated with NST, based on the results of the American College of Surgeons Oncology Group Z1071 trial, should be given with caution in IBC patients because this patient population was actively excluded from the study (43, 44). The results of a prospective clinical trial demonstrating failure to map in 75% of IBC patients, highlighting the importance of level I and II axillary lymph node dissection were presented (45). There was agreement that contralateral prophylactic mastectomy should be deferred to ensure that complications related to this non-oncologic surgery do not delay radiotherapy administration."
It is my preference to have as small a number of lymph nodes removed as possible, but MDA will remove 2 levels of nodes for IBC patients. I have asked about this a couple of times and they don't budge. I also don't want the nodes in my supraclaviclar region radiated but that's an argument for another day.
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Hi Denise. Sorry to hear about the decrease in your heart function and I wish I knew more about that. Do you have a cardiologist you can ask? I have had two echo-cardiograms with AC treatment; one before I started and one recently because of my increased heart rate. My injection fraction slightly decreased (2 points) and is still within normal range so it didn't raise any red flags. My MO did decrease my AC dosage, but I think that had more to do with reducing my other SEs. Is your IF still within a normal range?
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My surgeon did an axillary clearance when the sentinel node turned up so clogged with cancer it wouldn't absorb any dye or tracer. She removed 28 lymph nodes.
To add more lymphedema risk, the radiation treatments under my arm were intense. I only have a tiny bit of lymphedema, right above my wrist. I don't wear a sleeve, but I'm pretty careful with that arm. No blood pressures or pokes.
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SBE. Always love it when you chime in here. We had such similar diagnoses and treatments. My MO quipped once, we threw the kitchen sink at you. I’ve always liked to say I’ve had kitchen sink treatment, and I reckon IBC requires it. Woohoo for you coming up 10 years from diagnosis. I’ve just passed seven. I wish you were down the road and we could celebrate.
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"Kitchen sink treatment"! Lol...ain't it the truth. It will be ten years this coming October and I feel like a miracle walking. C'mon over to Colorado and I'll throw some shrimp on the barbie. We'll celebrate big time.
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Treatment Milestone #1 Achieved Today! I "rung the bell" on chemo with my last AC. (Of course I still have 2 weeks of SEs to deal with.) I hope the chemo did its job and I will get a good outcome, but that's another "wait and see". I didn't want to ring the big bell in the hallway, so my chemo nurse gave me this...
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Good for you, LW! A huge part of your treatment is behind you--you'll be done and dusted, with a beautiful new crop of curly hair, before you know it!
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Good job LW422!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! You did it! Hang in there!
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I also feel like they threw the x-large commercial kitchen sink at me when they saw IBC & TNC DX. Despite my size (I went from 148 pounds to 116 pounds today).
My surgeon also said 2 levels of lymph nodes removed for me, standard of care for IBC + extra long radiation (6 weeks).
My onc researched Lymphatic bypass for me, she is awesome. Only a few surgeon in this area knows how to do it.
It is still considered experimental so out of pocket is $8K, I think still worth it.
Another option for me is axillary dissection with a procedure called reverse axillary mapping and reapproximation of the blue (dyed) lymphatics. In a phase 2 trial this procedure, which is covered by insurance, reduced lymphedema rate from 20% to 8%. LVA bypass appears to reduce the lymphedema risk to 5%. Keep us posted on your LVA bypass LW422!!
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Thanks, SBE! No more AC for me, thank goodness. And wow... congrats on your upcoming 10 years!!
Hey Mamacure!! I'm so glad to be done with chemo. How is your treatment progressing?
I'm surprised that the LVB is considered experimental by your insurance since it is pretty mainstream these days. I was told at MD Anderson that most mastectomy patients are having the bypass done now, at least the patients with any lymph node removal. I am so hoping for a good outcome from that; lymphedema is one of my biggest fears. I hope to have more info about it once I meet with the plastic surgeon next week.
In other news, I'm getting PEACH FUZZ on my head OMG!
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Congrats on those who have had 10 since your initial BC diagnosis. That is wonderful. May you never get it back too.
Congrats on the peachfuzz LW422. Once that starts coming in, it will grow pretty fast. When my hair came back the first time, it came in curly which was weird as my hair used to be straight and smooth. It will be interesting for you to see if it changes colour etc.
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Hey Mara; how are you these days? I'm excited about the fuzz but not looking forward to curly hair. Of course, ANY hair will be good from where I've been lately! My hair was mostly silver before it all fell out so I expect it will be the same color.
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I have been pretty well physically. My MRI from monday was not t he best, there could be another brain met in the original tumour site. Radiation doc not sure but wants to scan in 3 months to rule it out. I am disappoint that I am not NED (no evidence of disease). I am taking the attitude that I will not worry unless and until I am told it was cancer. Still feeling strong. I did have a lovely walk of 9km/5.5 miles roundtrip. Took me an hour each way with a stop at a favourite burger joint for a snacksize burger. 14000 steps. I did no walking yesterday so wanted a long distance trip today. Feel really good too.
Silver hair sounds lovely. I did have some permanent hair loss from the whole brain radiation on top of my head so I clip mine to very short stubble. My natural colour is still brown almost black. I gravitate to lighter wigs with brown rooting so they look more real. I wear pixie style wigs since shorter hair looks better on me. I find it is nice to have a nice wig. I get mine from Paula young since their Casey whisperlites offer better breathability, keeps me much cooler than I would be otherwise.. I also don't miss having to style hair either.
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I'm glad you're feeling pretty good, Mara. I hate that you have the anxiety of waiting 3 months for another scan and I will be praying for a good outcome for you. I've been thinking today about my upcoming surgery and whether I will have "PCR", and then what. I know the treatment will be the same regardless... radiation then scans every 3 months. If only we could have some reassurance that we could finally be free of this nightmare.
I have a couple of wigs but I have never worn them. They are hot and scratchy in this Texas heat so I mostly wear lightweight beanies or scarves... or nothing at all in the house. I'm happy to see some fuzz on my head and a few eyelashes returning, though.
I'm feeling a little down today; I hate it when my thoughts get dark and I get scared. I just want my normal, boring life back and it's gone forever.
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LW422, you are still newer to all this. I am sorry your thoughts have taken you to a dark place. I do empathize with those though in my case, I am a generally more depressive personality unless I work at it through exercise and sleep. I hope you can take your mind off things for a while doing or watching something you enjoy.
My own worries are more financial in nature. I do believe my brain will be OK but I have been going 6.5 years since first actual dx. My hopes for you are that you do get a good response from the chemo given it is a faster growing cancer and no recurrence. You need a break from it all.
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Thanks again, Mara. I try to keep myself occupied and positive but sometimes the reality of it all just beats me down. It's nice that I have this place to come to because people here truly understand my anxiety and despair without judging me.
I hate that you have financial concerns; how shitty that this stupid disease affects so much of our lives. I admire your positive outlook and it seems that you always have a kind word for me. I appreciate it more than you know.
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Glad to be of help.
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I met with my surgical oncologist today and with the plastic surgeon as well. I'm feeling better about the upcoming surgery, though I did break down and cry during the SO appointment. I know that losing a breast will be a profound sense of loss for me, though I know that it is necessary. So all systems are "go" for August 23. I was surprised when the SO told me that I'd be spending the night in the hospital; I need to check my insurance coverage to make sure the "outpatient surgery" will allow for that.
One other nice surprise today was that my ultrasound scan showed excellent response to chemo! Everything has "shrunk", and the US tech was not able to find the cancerous lymph node even with a clip in it. The surgeon was really pleased and kept saying "excellent!" which lifted my mood considerably.
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Hi LW,
Glad to hear you are done with the first phase and moving on to the second! Even better that you have had a great response!
I was initially told I would not stay the night after surgery, and personally was not pleased with that. In the end, my surgery was too long, and I did not recover from anesthesia well enough to go home the same day. TBH I was still completely out of it the next morning and was drunk texting my co-workers that I was ok.
There is no way I could have gone home.0 -
LW422, an overnight stay doesn't necessarily mean you're "admitted." All the hospitals where I've worked have outpatient stays, where you can stay one night, go home the next day, and still be considered an outpatient.
But isn't it ridiculous that a person can have a breast surgically removed and NOT be allowed to stay overnight? When my friend had a mastectomy in 1978, she was in the hospital for almost a week. I went home the afternoon of the mastectomy and was glad to be sitting on my own recliner, but everyone's different.
Great news about your response to chemo!
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That is great news LW422!! Great job going in when you are still nauseous. You are off to the next chapter in great shape, you can do it!! Thanks for keeping us updated.
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LW, glad to hear about the response to chemo. That is awesome.
When I had my mastectomy, I had two surgeries. When I got out of the first one, my BP was 80/40. I also asked the nurse if they took the breast as it was still full looking. Turns out that I had internal bleeding. They fixed it up and I was sent home. Had the nurse not agreed with me, I would have gone home with internal bleeding after the first surgery.
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Blue22--hey girl!! I was wondering where you'd gotten off to; haven't seen you around here lately. I hope you are doing well. I have mixed emotions about an overnight stay; in one way I'd prefer to go home because the sooner I get out of "germ central" (the hospital), the better!! But on the other hand, I like that I will be monitored overnight "just in case."
SBE--I don't understand anything about how insurance and hospitals get the billing straight for this stuff. Geesh. I just don't want any unpleasant surprises as far as exorbitant hospital bills out of the blue for a few hours of observation. I'm going to call my insurance company today and see if they can clarify for me. Thanks!
Mamacure--thanks, girl. (I posted the same thing on the IBC Network forum so you might see it over there, lol.) I'm very happy that I didn't go through the hell of chemo to find that my cancer is resistant or whatever. I was honestly quite surprised at how pleased the surgeon seemed to be; I hope that the pathology after surgery will be good news, too! Today is 1 week since my last AC and I'm hoping the nausea will finally go away. I'm trying to chug water because I know I'm dehydrated...ugh. Hope you are feeling OK.
Hey Mara! I always count on a sweet reply from you! Wow, your surgical experience was a bit scary. I'm glad the nurse listened to you and they got you fixed up. I hope you're feeling well these days; I know you're waiting on that MRI in October. Hang in there, friend!
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LW, I not only have the MRI in October but a murder trial as well. A person threw bloody clothes in my backyard so I'll be testifying about that as well. Have to coordinate the MRI with when they need me in court.
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OMG, Mara!! A murder trial!! Is there any online article about the murder? (I'm nosy.) I want to hear about the trial and your testimony. And hopefully that will keep your mind occupied and away from "scanxiety" for a while.
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Well, I still don't have clarification on the overnight stay for surgery. I'm thinking the surgeon was simply mistaken because I called hospital admissions and my surgery is still classified "outpatient," which is subject to the 23-hour rule. I suppose depending on when the clock starts that could involve "overnight," but I have zero interest in checking out of the hospital at 4 a.m.!!
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You could probably look it up online, London Ontario news. Hopefully the trial is able to proceed since the crime was at the beginning of January 2019. The pandemic severely delayed things.
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Hi LW!
I've mostly been lurking on the boards from time to time, hoping everyone is ok. I was rather upset that someone who reached out to me directly a while back disappeared completely from this site, and feared the worst.I was worried a bunch about insurance issues with the overnight stay vs. day surgery. I remember trying to talk to my nurse when coming out of anesthesia and trying to convince her she needed to clear my insurance since they decided to keep me overnight. I think all she heard was mumbling nonsense.
Everyone is different in how well they tolerate anesthesia, I knew ahead of time based on family history I was likely to not do well.0 -
On the topic of insurance, I met with the plastic surgeon today (wow fancy swanky offices!!) who I wanted to do the flat aesthetic closure for my mastectomy. During the visit, I was informed that flat aesthetic closure by PS is not covered by my insurance. I didn’t know this. My surgeon never mentioned this when she recommended her.Reconstruction is covered but not this. Ugh. I guess I’m back to my surgeon doing the flat closure and hope for the best. Hope everyone is doing well today. I got out & enjoyed fresh pasta after the above appointment today.
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Hey Blue. I totally understand taking a break from this place from time to time. Sometimes I get overwhelmed and try to avoid stuff that makes me scared or anxious. Did you ever hear from that poster who disappeared? Hope she's OK. It's nice to "see" you.
" />Mamacure--how freakin' ABSURD is that about your insurance??? Do they not consider an aesthetic closure to be a type of reconstruction?? We want to look as good as we can, too, damn it. I noticed from my surgery schedule/order that there was no specific mention of any "plastic surgery" but that the PS is listed to do the closure and some venous reconnections or some such. (The bypass.) I guess they have to speak in code nowadays which is PATHETIC. Of course, your surgeon may have the expertise to do a great job for you. If not your ridiculous insurance company can pay for REVISIONS. (Like we all want to sign on for MORE surgery. Ugh.)
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Flat closure. pro Tip
Look for a surgeon who has had experience with male Mx. Breast surgeons do flat closure on men all the time. I’ve never heard of a PS being involved with guys.
More seriously, the result depends on how large the tumor is. Large tumors can leave a concave chest. I’d suggest, without a PS, you’d need to have a long conversation with your surgeon so you’d know what to expect.
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