Topic: IBC lounge: roll call, support and just a good place to hang out

Jul 28, 2021 12:32PM - edited Jul 28, 2021 12:36PM by LW422

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.

Jul 28, 2021 01:44PM sbelizabeth wrote:

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.

Jul 28, 2021 08:22PM sbelizabeth wrote:

"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.

Jul 29, 2021 10:55PM sbelizabeth wrote:

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!

Jul 31, 2021 06:17PM LW422 wrote:

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!

Jul 31, 2021 10:56PM LW422 wrote:

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.

Aug 1, 2021 04:02PM LW422 wrote:

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.

Aug 1, 2021 06:58PM LW422 wrote:

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.

Aug 4, 2021 10:05PM LW422 wrote:

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.

Aug 4, 2021 11:28PM sbelizabeth wrote:

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!

Aug 5, 2021 07:05AM mara51506 wrote:

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.

Aug 5, 2021 12:38PM mara51506 wrote:

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.

Aug 5, 2021 01:48PM LW422 wrote:

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.!!

Aug 6, 2021 07:03AM blue22 wrote:

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.

Aug 6, 2021 06:21PM - edited Aug 6, 2021 07:23PM by LW422

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.)