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

Sep 22, 2021 01:14PM sbelizabeth wrote:

zakheat, you don't indicate whether your cancer is hormone receptor positive, but those of us who are HR+ rarely get a complete response to chemo. Like TT, my chemo beat back the cancer enough that a mastectomy was possible. But the pathology results after the surgery revealed that although there was no cancer found in the margins, there were plenty of active cancer cells in the skin of the breast. My surgeon urged me to take heart that the cancer was now in a jar on a lab shelf and not on my chest, and the fact that the margins were clear was a very good sign.

Next month will be TEN years since this whole rodeo started for me. Don't let these blips on your radar destroy your peace. Hang onto hope.

Sep 22, 2021 04:22PM - edited Sep 22, 2021 04:23PM by LW422

Hey Mamacure. Oooh, 10/5 is just around the corner; I'll mark my calendar so I can keep tabs on you. My surgery was harder than I expected, mostly the numbness and the awful sensitivity... plus that "bag of golfballs" feeling in my armpit. I have been focused on ROM exercises and I'm 4 weeks out from my mastectomy; things are finally feeling better but I have a ways to go. I'm just afraid radiation is going to make everything feel so much worse.

I'm still a little irked that my SO removed 32 nodes...and NONE of them had any cancer. She followed the IBC standard of removing 2 levels of nodes. I am really hoping that the lymphovenous bypass will do its job though that remains to be seen. Neither of my surgeons mentioned anything about a sleeve for me, but the PS did take measurements of my arms before I had surgery.

SBE--we will all be ready to party with you on 10/20!! You're an inspiration to us.

Sep 24, 2021 05:56AM mara51506 wrote:

I am glad to hear things are moving along for you LW422. 6 weeks is a long haul but before you know it, you will be done that too the way time moves by quickly. Good for you to be getting your port removed as well.

Sep 25, 2021 12:40AM - edited Sep 25, 2021 12:43AM by mara51506

LW422, I am doing well. Glad your port is out, wow, 2 rads for 25 days. Well, it will be more tiring back and forthing everyday but it does go quick. Find a good skincare routine and rest up on the weekends. I only had 1 per day for 25 days. Ensure that you baby your skin for sure.

Glad you are resting up. I was tired myself but got over it. Keep us posted if you can during rads, we'll cheer you on this leg of a long road.

Sep 25, 2021 07:24AM mara51506 wrote:

Oh, glad it's once a day instead then. Twice a day would be exhausting.

Sep 25, 2021 01:06PM LW422 wrote:

Hey Maggie. Glad you are on the other side of surgery and doing OK. You'll feel so much better once those drains are out. My surgery was a month ago (single mastectomy) and I'm still having weird sensitivity and numbness. I guess that will take time to resolve. I hope you get good news with your pathology report! Take care of yourself.

Sep 26, 2021 01:00PM zakheat wrote:

I just want to thank everyone for being so supportive. It did help me get some perspective to hear all of your advice. I need to keep reminding myself that this is a multi-step process. It is unreasonable to think everything would be peachy after only the first step.

I go in for my surgery planning on 9/29 and meet with my PS the same day for some preliminary planning. I won’t be able to reconstruct for at least 12 months but the doctors at Vanderbilt say I need at least that long to get properly scheduled for plastics (whoa).

To those of you that have recently had surgery, I hope you continue to heal quickly. Thank you to everyonefor giving such insight on what is just around the corner for some of the rest of us.

Sep 26, 2021 02:08PM LW422 wrote:

zakheat--let us know your surgery plan and when it will be scheduled. I'm hoping for a great outcome for you; we all want to know that this hellish treatment is working!

Today I get to take a shower and remove the bandage over my port removal wound. I'm so thrilled to have that thing out of me. One week until radiation starts so now a whole new crop of "SEs" to worry about.

I hope everyone is doing well and enjoying a bit of fall weather.

Sep 26, 2021 09:40PM LW422 wrote:

You're so kind, Mara. Thanks very much. I've got a week to go before the 'fun' starts.

Sep 29, 2021 12:02PM pchyen wrote:

Hi everyone, been almost a month since Nicole's DMX surgery. Pathology came back about two weeks ago and showed pCR from neoadjuvant chemo, I didn't get a chance to update. Nicole's oncologist called her yesterday (must have just got to her report, we are supposed to meet with MO next Tuesday). MO was over the moon on the results. So, radiation is next, then Herceptin for a year. MO mentioned it is rare for pCR, and that the distant recurrence rate is less than 5%, so very good prognosis, still crossing our fingers though.

So, surgeon stated it is IBC. Nicole's MO probably didn't want to say IBC since we all know the grim stats showing on the internet. Nicole said to the MO "you gave us 3 chemo choices, that was hard to decide". her MO said to her "well, you picked the right chemo didn't you", LOL.

Sep 29, 2021 01:13PM mamacure wrote:

Congrats to Nicole!!
anyone else told to wear compression sleeve & gloves after surgery (lymph nodes removed) to prevent lymphadema? I feel like I’m the only one. I was advised to wear it all day after surgery, taking them off at night for at least 30 days.

Sep 29, 2021 07:35PM - edited Sep 29, 2021 07:38PM by zakheat

Hi all! My appointment with my surgeon went quite well. She was much more optimistic about how beneficial the chemo had been than my MO. She had sought a second radiology opinion to confirm her thoughts and he concurred. Of course she reiterated that the pathology would have the final say. I'm feeling better today. The plan is to have surgery around the first week of November (have to hear from scheduler). I will have a modified radical on the left and a total mastectomy on the right. The plastic surgeon was very blunt about it being necessary to wait 2-3 years not 12-18 months for reconstruction since this was IBC. I'm okay with that. I just want to live at this point.

Mamacure- My surgeon told me I would have to wear a glove too. Because the cancer is in my axillary nodes and on my dominant side, it puts me at an increased risk for lymphadema. I hope your surgery goes well.

LW- Good luck with your radiation coming up!

Sep 29, 2021 08:54PM LW422 wrote:

Thanks, zakheat--I appreciate the good wishes. I'm ready to get the show on the road with rads so I can be done with it.

I know you're glad to get some reassurance from the RO, and to have a tentative surgery date. Enjoy your "time off" during October to recuperate and get ready for surgery. It's all hard but do-able, and we'll be here for you.

Oct 3, 2021 10:45PM mamacure wrote:

Thanks LW422! I think I will end up with a long incision too. I passed my Covid test so ready to be done with surgery. I’m more nervous about the nuclear dye injection before the surgery. Hope it’s not too painful. Best of luck with your first radiation tomorrow! You’re on your last leg. You can do it, almost there!

Oct 4, 2021 12:14PM pchyen wrote:

Hi mamacure, best wishes for successful surgery and speedy recovery!

Hi LW422, Good luck with your first radiation!