August 2019 surgery support group
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One week post op - lumpectomy and sentinel node biopsy. I'm sore and numb at the node site. It's really weird. I see my BS tomorrow. My pathology showed up in my online chart yesterday and I am cancer free! I think it's odd that someone did not call me. Ah, well, it's good news and I'll take it!
Radiation appointments begin at the end of the month.
arizonaboundgal - thinking about you today!
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Found out this morning via a phone call from Cancer Center hospital -- I'm scheduled for IORT early on August 28.
Sending healing thoughts and prayers for all August 2019 Surgery Pink Warriors~
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Hi everyone
Just giving a little advice to anyone heading to surgery. I went to my PS today. My hospital discharge papers said to see him within the week. I found out that I could take off the tight surgical bra for a more comfortable sports bra and could take a shower! My advice is ASK about these things. Don’t assume they will tell you. I thought I had to wait another week. ASK, because a huge part of recovery is being as comfortable as you can be. If you are not sure, call and don’t assume your discharge instructions are gospel. I can’t tell you how happy I am that I went (when I thought this appointment was too early and a waste of time).
Take care of yourselves
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Updating our list - Welcome CherokeeLady
August 1 - LMS458412 - bilateral mastectomy w/o reconstruction
August 2 - sagelady - L mastectomy with sentinel node bx
August 5 - tmh0921 - bilateral mastectomy, latissimus dorsi flap reconstruction on my left breast, and tissue expander placement bilaterally
August 5 - Peggy814 - Bilateral Mastectomy
August 6 - okjoan - lumpectomy and axillary node biopsy
August 8 - laurencl - Right mastectomy with tissue expander placement
August 8 - dawns1962 - nipple sparring (hopefully) mastectomy of my right breast and expanders, left breast lifted
August 8 - ik0106 - lumpectomy
August 13 - arizonaboundgal - bilateral mastectomy with no reconstruction
August 18 - prehistoricmom - left lumpectomy and sentinel node biopsy
August 19 - ucfknights' mom - bilateral mastectomy
August 19- notdefined - unilateral mastectomy with diep reconstruction
August 20 - AK_btrfly - Bilateral mastectomy and free tram flap
August 28 - CherokeeLady - IORT
August ? - Nadia_D - right breast mastectomy with tissue expander placement
August ? - Margun - bilateral Goldilocks
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Hi everyone.
Anyone in this list as ILC diagnosis? I am just diagnosed yesterday. Appt with surgeon today. Totally nervous. Trying to get my thoughts in order but I am sitting here like a brick. I also have a bad cough and chest pain so waiting for xray related to that, and hoping beyond hope that they are not related and not in my lungs. I cannot believe this is me. Really want to move on fast, but I know it is a very long road ahead so the tips here are priceless. Didn't even think about all the prep that will be required pre and post op for all of this. The spread/reoccurance worries me the most I guess. I have twins - 12 years old. Every time I think about them I break down. Thanks for listening.
PF
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Welcome Purple-Flower
I’m not sure if any of us have ILC, but if any are I’m sure they’ll chime in soon.
The worst part of all of this is the waiting and testing and waiting more until a plan is in place and we can move forward.
(((Hugs to you)))
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thank you. I am so scared and sad. I hope I can be as brave and strong as you all seem to be.
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okjoan, congrats because a) cancer free and b) finding it out for yourself!
purple-flower give yourself time! TMH is right, the testing & waiting is the hardest. You're in good company.
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Had bilateral MRI this morning, could have been worse. I thought of Aliens, that part when Apone says, "somebody wake up Hicks" and tried to breathe calmly. That machine seems designed to induce panic attacks. Next up SNB Thursday pm with x-rays and stuff, then lumpectomy Friday. Already feel super tired.
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I liked the MRI better than mammograms
You’ve got this prehistoricmom
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Agreed mammograms are awful
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I just had a bilateral mastectomy on 7/24. I finished the TC CHEMO on 5/23. The hair loss was rough at first, but becomes a blessing during chemo. It grows back quickly after you are done.
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Purple-flower, I was a wreck for about 3 weeks after diagnosis. Shaky, weepy, worried, no appetite, trouble sleeping (but I got a small prescription of Ativan to help with that - it let me sleep about 6 hours straight each night for a couple of weeks). But, I promise you that once you have information and a game plan on what you're going to do to take care of this, you'll feel stronger. Once you know what to prepare for, you'll feel like you have more control.
Think of your loved ones and tell yourself, I'm going to get through this for them. I have a 9 year old, so I know how you feel. I just keep imagining myself helping him get ready for the prom, at his high school graduation, touring colleges with him, etc. I'm visualizing what I'm fighting for and telling my cancer cells to die.
Also, look into meditation. There are some good videos online that help you focus on deep breathing and relaxation. It felt a bit hokey the first time I did it, but it really helps.
Try to walk or move around each day. Stay busy. Read a good book. Watch a movie. Spend quality time with your kids. Get your mind off it once in awhile. Live.
You, too, will find the strength you need. You can handle this! One breath at a time, one day at a time.
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Hi LMS458412
Thank you so much for your kind words. I really really appreciate it. Helps me feel somewhat "normal" in this topsy turvy world.
I had consult w/surgeon yesterday. Overall decent info in that she thinks relatively small from what she feels (but who knows) and ultrasound on nodes looks like may not be infected... also shows grade 1 (which I guess is common for ILC) so that's good too. But can't be sure - on anything. So, as you know, my choices now are lumpectomy vs mastecomy. Then radiation. Then hormones. The chemo is unknown until the node analysis comes back. I guess leaning toward lumpectomy since less severe and hope they can get it all and no nodes... but I don't know yet.. I hope I'm doing the right thing. I need more info. Scared of node/margins thing. Scared of recurrance later. No guarantees on anything (life too I guess..)
I have been trying to remember to breathe. And enjoy every minute. I am very lucky and grateful to have a supportive family so I need to do all the picturing you say. Heading up to Tahoe mountains for the next few days so I think the fresh air and mountain green will be good.
How are you feeling? I hope you doing ok!!
PF
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Purple-Flower
My initial diagnosis was in 1999, that's 20 years ago. I was 27 at the time, and it was almost unheard of for someone my age to be Dx with breast cancer. My doctors all assured me that we had caught it early, and I was going to be fine. I, however, was terrified and convinced that I was going to die. I had a lumpectomy, sentinel node and axillary node dissection, radiation, and Tamoxifen. The doctors were right, I didn't die, and I was fine.
I am now dealing with a NEW diagnosis. My MO says this is a new cancer, not a recurrence. This one's a little scarier, bigger and more aggressive, and this time I'm having chemo. But you know what? My doctors are once again reassuring me that we caught it early and I'm going to be fine. My MO is saying we're going to get another 40 or 50 years (I'm 46, so that sounds good to me).
My oncologists have always told me that there are new and better treatments being developed and approved. Even if it does come back, we've bought more time for those newer treatments which is a good thing
We may all seem brave, but we're really just fighting and doing what we have to do. On here, others truly understand what we're going through and it helps tremendously.
Tracy
**Edited to add that I also had two children between my original diagnosis and this one. Two boys, age 11 and 16. At the time I got pregnant with my first they had no idea how it would impact my cancer. Now they make fertility plans for young women who want children after treatment! I guess I just want to say that now is a scary time, and it's ok to be scared. It does get better, and there IS life after cancer. ((((Hugs)))
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I still have two surgical drains, which I'm hoping come out on Friday. I'm off all of my post surgical meds but the daily blood thinner (5 more to go). I'm still a bit sore, but not too bad, and no pain. I'm also sleeping on my side with pillows, so I'm much more comfortable. I have two appts on Friday, one with the general surgeon and one with the plastic surgeon, hopefully to remove drains. Then I have an appt Monday morning with my oncologist to finalize my chemo plan and set dates (port was inserted during mastectomy).
So everything is moving along fine. Except..... I'm bored out of my mind. I haven't been cleared to drive because of the drains. Hubby went back to work yesterday and the kids are at school. There is seriously only so much reading and tv watching one can take. I'm not even supposed to be doing housework. I'm seriously thinking of escape plans.... maybe I could take an Uber and go to work before anyone notices... I could hide in my office and do some normal things. Or maybe I could take an Uber to the local park and escape on one of the walking trails..... hmmm, no, heat index is over 100 here today.... I bet I could make an escape to the mall, they have air conditioning....LOL.
I hope everyone is holding up well post surgery.
Thinking of everyone who has surgery coming up...
Kkmay, any update one when your mom will be able to have surgery?
Tracy
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Purple-flower - Good luck with your decision. Enjoy the mountains! Sounds like the perfect getaway right now.
Tracy - I'm 47 and my BS tells me to plan for the next 30 years. I like her optimism. I'm choosing to believe her cause it sounds good to me!
My friend is an oncology nurse and tells me the same thing about improved treatments and promising research. There's lots of hope!
I hope you get your drains out Friday! I feel 100 times better without them. I vacuumed and did laundry today. It's too hot, humid and rainy here in Orlando for too much outside stuff, so I feel your pain. Lucky for me, I have some juicy romance novels to keep me entertained!
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TMH
Thank you for the much needed smile! I am sick of being home. I had my daughter drive me to Target today...because...uhhhh, I needed some bandages to put in my sports bra that my PS recommended....yeah, that’s my story! I needed out and to walk among people (don’t tell on me). Bribed my daughter with Starbucks....
Purple-flower
Others have said everything I was going to say. I cried for the entire month of January. Once a plan is in place, you have a little more control (not enough, but a little)
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Laurencl
I won’t tell on you! Hubby snuck me out to dinner with the kids this evening (shhhhhh)
Tracy
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how is everyone that has had surgery doing
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TMH your tales of boredom ring true to me--I'm trying to stock up on stuff I can do and not get into trouble. But like you said, there's only so much reading & tv anyone can stand. I have podcasts for when I'm really knocked out. Also dumbass coloring pages. Do you recommend books on tape? It would be too effing hot to do anything even w/o surgery
and 2 months w/o rain in San Anto. Makes me edgy. 0 -
I have some books on tape, but depending on where you are physically and what painkillers you're on (narcotics or have transitioned to plain Tylenol) they just may put you to sleep. Concentration hasn't been something I've excelled at in the last week and a half. I've been rotating between reading on my iPad, watching movies/tv, coloring books (got a few as a gift), and sleeping. Showers have been a true highlight of my days. LOL
Recovery really hasn't been as bad as I thought it'd be. I only needed the narcotic painkillers the first few days.... after that I've just been sore and tired. But the boredom is real.... I'm used to commuting 45 minutes to work, working at least 9 mind intense hours, and commuting another 45 minutes home then dealing with kids activities, etc. as well. I'm not tolerating forced inactivity well I guess.
I logged into work the other day and dialed into a conference call because I needed to exercise my brain cells. My boss was not impressed and told me to rest and focus on my health (I do have a wonderful boss, he's been very supportive). So I'm back to entertaining myself at home.
BTW - I'm in the suburbs of Atlanta, GA. The heat index has been at well over 100 all week, so there's no doing outside activities here either.
Hope your surgery goes well
Tracy
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I had a left mx and SLNB on 5 August. No reconstruction for now. Have a 2 month old baby so looking after him has been challenging. Anyone have shoulder stiffness?
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Hey Ladies! Sorry about the delayed update, didn't have internet access while in hospital. I'm doing awesome. Surgery went great...I think my family said it took under 2 hours to do the BMX. Was up and walking around about an hour later and feeling just fine both emotionally and physically. Believe it or not, I've needed nada, zip, zero pain relievers after the procedure. (Not even Tylenol!) I'm shocked but obviously very happy about this. Surgeon said there were no surprises; I guess they removed only one node which has been sent to pathology along with breast tissue. For some reason, I thought my surgeon had told me that they would test it while I was in surgery, but they did not. Maybe I misunderstood. Anyway, I guess several doctors 'felt' it and agreed that it was nice and squishy and they didn't feel like it has spread to nodes. Time will tell, so fingers are still crossed. For anyone in this group still awaiting surge, I can't tell you not to worry but I was quite surprised at how simple a surgery this was.
It seems like everyone is doing a okay after this operation and that makes me happy. Keep moving forward, everyone!
Purple Flower...welcome to the group. Sorry you're here, but being in this group has certainly dropped my stress levels to something sorta manageable. I hope you find the same relief, because it's damned hard at first...especially before you have a plan. I also have ILC, but I'm not sure that the type matters that much; yes, it presents differently and yes, it seems to have a higher recurrence rate, but I want to say that size and grade is more important. (But what do I know, lol....I didn't even know there were different types of bc until recently!) I know there is a seminar coming up next week that addresses ILC specifically if you want to learn more about it. https://lobularbreastcancer.org/cleveland2019/ All you have to do is sign up and tune in.
Thanks again to everyone in this group for sharing your experiences. It's been a godsend.
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Arizona, that's great news & VERY encouraging!!! May we all have "nice & squishy" masses, yes?
Tracy, thanks; I guess I'll cue up the books on tape & not be too disappointed if I fall asleep 😴
FTM are you able to carry him? Even without mx carrying a new baby around is going to make your shoulders ache, but I hope other members will chime in with sympath/empthy and advice (it's been a long time since I've had a 2mo!!). 2 things that have helped joint stiffness for me since I've gotten older & mildly arthritic 1) Deep Blue a doterra lotion and 2) Lord Jones high CBD formula body lotion. Hope you can find time to keep reading & posting here! Sending out good vibes to you & baby!!
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ucfknights how's your mom doing w/4 days to go? Thinking of her. ❤️
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arizonaboundgal, so great to hear your surgery went so well!! I am due to get bmx (w expander reconstruction though) and slnb on 9/10. I am nervous....how is the incision near the lymph nodes? I think Im most nervous about being out 5 hours or that I will wake up with a full axillary dissection. Probably unfounded as they dont believe it spread to my nodes per mri and physical exam but I know thats not conclusive.
Btw, can any of you believe when I was getting pre op surgery clearance from my primary care dr he referred to my breast cancer surgery as elective then corrected himself to say “semi elective"? He also seemed to imply I shouldnt be going as far as a bmx let alone reconstructing myself. I understand women have different decisions on that but I thought wow, what a sexist pig, I am not doing any of this to get a “boob job" especially since im a DDD (not reconstructing to that size obviously besides its impossible) plus my surgeon pretty much gave me the only option of one sided mx or bmx...lumpectomy not an option due to another area of atypical cells nearby he also needs to remove. I told this primart care dr if I dont do breast cancer surgery and it spreads it could eventually result in death.... so I hardly consider that surgery elective in any way shape or form. Needless to say I will never set foot in his office ever again after this.
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Arizonabound
Glad you feel good! Thanks for checking in!
Tracy, I miss work too. This is no vacation. I can’t really concentrate to read and just want to escape. I’m outside of Philadelphia and it is hot here too. My daughter is going to be studying in Europe next semester and all I want to do is run around with her before she goes and that has me nuts too....I try to focus on the cool pixie cut I’ll have when she gets back (I did chemo first).
FTM
I hope you have some help with the baby. There are lots of aches and pains from surgery. Try to rest when you can (easy to say to a new Mom I know). I hope you can get some sleep
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Prehistoricmom...Yes, here's to nice & squishy nodes!
Trying....So happy to read that you've got a surgery date. Incision near nodes isn't painful at all and visiting nurse said it all looked great. I had EXACTLY the same fear of waking up and finding they had to take all my nodes. It never happened. I think it's sometimes human nature to fear the worse when it comes to cancer. I'm also glad that you're never going back to see your primary doc. He sounds like a goon.
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I'm happy for your good news, okjoan!
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