IBC lounge: roll call, support and just a good place to hang out
Comments
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SBE--thanks for the radiation info. I have my simulation tomorrow and then it's off to the races. I'll be glad to get this done with.
In other news, my MO has released me due to my pCR and we have graduated to the every-three-months followup schedule. He said I can have my port removed... woohoo!! I asked him about additional treatment for TN and he basically said I don't need it so I guess that's that.
Zakheat--sorry you are feeling down about treatment. I think it's fair to say that they don't actually know how effective your chemo treatment has been until after surgical pathology. I have read that less than 25% of IBC patients get pCR with chemo, but the addition of surgery and radiation are very effective at removing the remaining cancer cells. So take heart!!
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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.
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Thanks everyone, so helpful to hear all the stories here! LW422, my surgery is 10/5, scared but anxious to get it over with. Scared to get lots of nodes taken out. Will do some stretches, order compression/active massage sleeves to prevent lymphadema. Did anyone get compression gloves? My PT nurse was helpful so far. Daily radiation seems overwhelming (hospital visit every freakin day!!) but great idea to check off each day. Should be much better than chemo.Hope it goes fast for us!
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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.
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I met with my RO today and had rads simulation... got my "body mold" made and I'm marked up like a topographical map. (No tatoos.) Radiation begins October 4 for 6 weeks.
Tomorrow I'm having my port removed; I can't wait for that thing to be GONE.
Hope everyone is doing well.
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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.
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Hey Mara. How are you these days? I'm happy to report that my port is history; it was removed a few hours ago. Of course the local anesthetic is wearing off and it's beginning to hurt, but hopefully that won't last for long. I got home and jumped into my PJs so I can be a slug for the afternoon.
As much as I dread radiation I am ready to get on with it. The sooner I get started, the sooner it will be finished! The RO told me yesterday that if I had not had pCR from chemo that I'd be having TWO rad treatments a day for 25 days... argh. So I guess my one a day for 30 days isn't as bad as that.
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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.
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I'm glad you're doing well, Mara.
I'm not having the 2 rads a day; thankfully I am "only" having one a day for 30 days. I think the RO was trying to make me feel better by saying that some people get twice a day treatment.
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Oh, glad it's once a day instead then. Twice a day would be exhausting.
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hello! I am glad to here you are doing well. I just had a bilateral mastectomy and auxiliary lymph node removal on Tuesday 9/21 Now awaiting pathology. The ultra sounds prior to surgery showed no cancer in the lymph nodes and just a shadow of the 22mm tumor in the breast (6mm) I will certainly be glad to have the drains gone - and be on the ot her side of this ..
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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.
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LW422, I had the same weird sensitivity issues. Kept feeling almost an itchy sensation that I wanted to scratch even though it was not on the surface. Drove me nutes for a while for sure. There is definitely a lack of sensitivity along my scar as well that took some getting used to as well.
Once the drains are gone, you will feel so free cynmaggie. I felt immediate relief though for me at least, it was painful coming out. I don't think the nurse did it right. Once out, no problems.
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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.
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Zakheat, I'll be in your pocket cheering you on during your surgery and recovery as well. Keep us posted how you are doing when up to it.
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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.
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LW422, will be in your pocket encouraging you during the radiation process and sending healing energy.
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You're so kind, Mara. Thanks very much. I've got a week to go before the 'fun' starts.
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Hi All,
Hope you all are doing well. I was experiencing beaches for past few days . I have history of migraines and sinuses but this didn’t go away. I went to ER and got a ct scan done which was clear. As my nose also hurts so must be sinus. Now I can go back to work tomorrow anxiety free.
Love to al
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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.
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zakheat--hope your surgery planning appointment goes well today. Let us know what the plan will be.
Flo--glad the CT scan was clear and your anxiety has eased. I hope your headache is better. Take care.
pchyen--hi, Peter. What FANTASTIC news about Nicole!! (I also got to hear "pCR" last month... woohoo!) Sorry that IBC was confirmed but sounds like the outlook is very positive. Hugs to both of you.
I hope everyone is doing well these days.
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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.0 -
Hey Mamacure. Is your surgery still scheduled for October 5? Neither of my surgeons ever mentioned lymphedema sleeves or gloves to me, but I had the lymphovenous bypass surgery. My arms were measured by a weird machine before surgery so they can keep tabs on any changes when I go for checkups.
I have not experienced any arm or hand swelling at all after surgery; the most irritating part of having the lymph nodes removed is a weird sensation of having a "wad" of something under the armpit, and a strange nerve pain at the back of the upper arm. I know these are common because I scoured the surgery section to see if other people had similar SEs and honestly it seemed a little overwhelming at first. Thankfully, things seem to be smoothing out 5 weeks post surgery and I'm feeling pretty good. The tightness is relieved by some range-of-motion exercise that I do each day, so plan on that.
My radiation starts on Monday the 4th, so next week is momentous for us both!! My very best to you for a successful surgery and an easy recovery.
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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!0 -
thank you LW422 & Zakheat.
Yes my surgery is still 10/5. I got my sleeve & glove today, found a vendor who bills my insurance directly. LW422, glad to hear you are feeling better! Especially your under arms. Did your surgeon have 1 or 2 incisions? My nurse said that they might try to do my underarms via my breast incision. It would be good to have just one incision though it will be a long one. Take care everyone!
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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.
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Hey Mamacure! It's only 2 days till your surgery; I hope you're not feeling too anxious. I'll be thinking of you on Tuesday. Sorry I didn't answer you about the two incisions... I only have one but it is long. It starts mid-chest and goes under my arm. The PS told me it would be long because I didn't want any "dog ears" and he had to "chase it" to smooth it down, whatever that means. Anyway, he did a good job but it is a long incision.
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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!
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Mamacure--don't worry about the injection. For my surgery I was out as soon as the OR doors closed behind the gurney taking me in!! I didn't know a single thing until they woke me in recovery. I was worried about a sore throat from the breathing tube but I didn't have any problem with that at all. My best wishes to you; I'll be thinking and praying for you on Tuesday. Hugs.
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Hi mamacure, best wishes for successful surgery and speedy recovery!
Hi LW422, Good luck with your first radiation!
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