October 2018 Surgery Support Group

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  • Naesha
    Naesha Member Posts: 62
    edited October 2018

    Thank you Kista for sharing the details and i hope you feel better soon. I am glad that your sentinel nodes were clear. I wish you for your fast recovery.

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  • SLL101984
    SLL101984 Member Posts: 222
    edited October 2018

    Hi ladies, I just stumbled across this thread. Tomorrow morning I go in for my exchange surgery. I had a BMX back in May and I’m so excited to get rid of these tissue expanders. Everything has gone smoothly so far I’m just waiting for something to come crashing down. Good luck everyone with your surgeries!

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  • kista
    kista Member Posts: 25
    edited October 2018

    Marsha - Thank you. Been feeling ok. Just nauseous here and there and ready to get the issue with my drain taken care of

    SLL - Good luck tomorrow. Let me know how they feel. How long did you have your expanders before they started adding to them?

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  • apatient
    apatient Member Posts: 22
    edited October 2018

    Hi sillyoldrabbit and all the others! I hope that all who have already had surgery are recovering comfortably. For the rest of us,just hang in there. I’m just busy nesting and making my bedroom all cozy. I have a bilateral mastectomy scheduled for Oct. 15. We’re all going to do just fine!

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  • Kanona7795
    Kanona7795 Member Posts: 54
    edited October 2018

    Kista- Thank you so much for sharing your story and pictures. My BMX is on Oct 17th and I have been so anxious about it. Seeing your pictures and hearing you story has helped. I hope your wound is healing and you are resting comfortably. Please keep us updated on your recovery. It helps to get a idea of what I’m up against.

    Sillyoldrabbit- I hope you are doing good and recovering nicely.

    apatient- Looks like we both go under the knife next week. Good luck to you and I pray for a speedy recovery.

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  • sillyoldrabbit
    sillyoldrabbit Member Posts: 124
    edited October 2018

    Welcome, welcome to SLL101984 and apatient!

    My oldest daughter once sent me a copy of this illustration (below) because I'm such a worrier. In case you can't read the small print, it says:

    "'Supposing a tree fell down, Pooh, when we were underneath it?' (said Piglet)
    'Supposing it didn't,' said Pooh after careful thought. Piglet was comforted by this."

    I have a framed copy on my wall and am frequently comforted by it, too.

    image


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  • GAWarrior
    GAWarrior Member Posts: 398
    edited October 2018

    SLL101984, good luck with your exchange surgery today. I can't wait to be in your shoes and getting my implants.

    Proud_Patriot, good luck to you tomorrow! Wishing you speedy healing and good path results.

    Question: was anyone told to go off their supplements before surgery? If so, how long before? My BS only said to stop aspirin, but never said anything about vitamins. Also, were you told to bathe in a special soap? If so, how many days prior to surgery? TIA


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  • Kanona7795
    Kanona7795 Member Posts: 54
    edited October 2018

    sillyoldrabbit - Will you add me to the surgery calendar. I’m having a BMX on Oct 17th.
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  • Aussie-Cat
    Aussie-Cat Member Posts: 5,168
    edited October 2018

    GAWarrior, I was told to go off St John's wort 2 weeks before surgery. You could Google which things are recommended to go off before surgery, if you like. A number of herbal remedies either cause bleeding or interfere with anaesthetic medications.

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  • Proud_Patriot
    Proud_Patriot Member Posts: 27
    edited October 2018

    sillyoldrabbit=I am glad you are recovering well from your surgery. I am terrified. I have never had surgery even though I am 53 years old.

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  • kista
    kista Member Posts: 25
    edited October 2018

    I would verify all medications with your surgeon(s). I was told no blood thinners (alcohol, aspirin, etc) at least a week prior.

    They gave me special antibacterial soap and asked me to shower the night before and the morning of

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  • SLL101984
    SLL101984 Member Posts: 222
    edited October 2018

    kista- if I remember correctly (seems like forever ago!) it was about 2-3 weeks. Some people wake up with them expanded some already but my BMX was suppose to take 4-5 hours and I was out for 9! So my ps put mine in empty and then started filling with air instead of saline to really make ure my skin and incisions we’re healed well.

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  • sillyoldrabbit
    sillyoldrabbit Member Posts: 124
    edited October 2018

    Kanona7795, so sorry about that! I think you were on the calendar at one point and got lost during one of my many copy/paste operations to keep it updated. Anyway, you're there now.

    Proud_Patriot, from my perspective, the worst thing about surgery is the anticipatory anxiety. Wish I could offer some words of wisdom there, but at my advanced age, I still haven't learned how to combat that. The process itself has never been particularly unpleasant. A wee bit of pain from starting the IV and then, well, once they start the anesthesia, you're basically not there until you wake up in the recovery room. I'd rather have surgery any day than drive on the LA freeway, just to put things in perspective.

    GAWarrior, I was told to shower in the morning and evening of the day before as well as the morning of the surgery with any OTC antibacterial soap. However, they also told me that they don't give these instructions until a few days before the procedure. Guess they don't want to risk having people forget if they tell them too far in advance. I imagine every surgeon has his/her own preferences. They also provided written instructions about not taking aspirin or any blood thinners 7 days before surgery. The problem is the definition of "blood thinner." Many supplements qualify, like fish oil/algae oil and vitamin E. FWIW, I found this article on the subject: Supplements to Avoid Before Surgery

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  • GAWarrior
    GAWarrior Member Posts: 398
    edited October 2018

    Thanks for the info re: supplements. I looked up going off them before surgery and some docs say to do it 2 weeks before, others just 1 week. I went off them yesterday (10 days out) just to be certain. Got the flu shot on Sunday, too. And, picked up the antibacterial soap, so I'm good to go.

    BethM29, good luck with your surgery today! Sending good vibes and cyber hugs.


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  • sillyoldrabbit
    sillyoldrabbit Member Posts: 124
    edited October 2018

    Just got the pathology report back. No cancer cells left alive! I'd do a happy dance, but am still not supposed to jiggle up there. I hope so very much that all of you will soon be telling the same story!!!

    It was the surgeon's nurse who called with the report and she didn't have any more details. I'll get those next week during visits to the surgeon and MO.

    SLL101984, Proud_Patriot and BethM29, please let us know how it went. Hope all is well!!

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  • Diane500
    Diane500 Member Posts: 6
    edited October 2018

    I wish I'd seen this post before my surgery, but I haven't been online lately. I had a mastectomy with lymph node removal on Oct 3. Even though I'm 39, I've never had surgery before and was literally terrified on the day of surgery. I have TNBC Stage 3. I just received a phone call yesterday saying I had a complete pathological response although I haven't read the report yet. This came as unexpected good news as my oncologist didn't think that I had respond well to the chemo and has literally been treating me like a dead woman walking.

    Sillyolddrab-Congraulations! I'm so happy that you received the same good news I did.

    I hope everyone surgery goes well and they will receive the same good news I did. I will keep all of you in my prayers.


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  • Trishyla
    Trishyla Member Posts: 1,005
    edited October 2018

    Yay, Diane500! So glad to hear you had a PCR! Congratulations.

    Trish

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  • GAWarrior
    GAWarrior Member Posts: 398
    edited October 2018

    CONGRATS, Sillyoldrabbit! I'm doing a happy dance for you! That's awesome news!

    Diane500, welcome and YAYYYY for you! So happy for your great results, as well! I know it's a huge relief for you, congratulations!

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  • sillyoldrabbit
    sillyoldrabbit Member Posts: 124
    edited October 2018

    Diane500, awesome news!! And welcome to this thread. TNBC here also.

    Just out of curiosity, did you have a very high Ki67? Mine was in the 90's, and I've wondered if a high score might actually work in our favor because those super fast growing cells are more vulnerable to chemo.

    I find it rather disorienting being convinced I'm doomed for almost 8 months and then suddenly discovering that I've got a reprieve. But it's a good kind of dizzy.

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  • apatient
    apatient Member Posts: 22
    edited October 2018

    Yay, sillyoldrabbit and diane500. What good news. The Pooh quote came at a good time so thank you for that. All my worries crop up around evening time.

    My bilateral mastectomy will be Monday. Trying to get the house ready and all prepared. Got a wedge pillow to sleep on! Picked up my Vicodin. Bought a handheld shower head for my husband to install. I feel like there’s a lot to do and that I’m forgetting something important.

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  • sillyoldrabbit
    sillyoldrabbit Member Posts: 124
    edited October 2018

    apatient, don't forget food! :)

    Glad the Pooh quote worked for you. It's stopped me in my tracks so many times when I've been ruminating about some imagined disaster.

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  • PatTheArtist
    PatTheArtist Member Posts: 13
    edited October 2018

    "Scheduled" for a BMX on October 23. Today is October 11. I had to call my BS a week ago to see if I have a surgery date yet. I was told they plan Oct. 23 but were still waiting to hear from the PS to find out the amount of time he needs. I have not heard a thing since then (that was Oct. 2). No confirmation. No appointments for pre-op lab work. No pre-op visits. Nothing. I was diagnosed on Sept. 6. The lump that could not be felt I can now feel. Have I been dropped through the cracks? Every single step of the way has been a struggle this time (my second breast cancer). I have had to call repeatedly for my biopsy results (finally found out 3 days after the oncologist had them), had to make repeated calls to get a PS appointment (breast surgeon's office didn't sent over my records that they needed just to schedule an appointment, finally they did after I pestered them), had to call 5 days after my PS appointment to see if I had a surgery date, and now I don't know where I stand as far as pre-op as no one has contacted me and the surgery is supposed to be a week from Tuesday.

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  • SLL101984
    SLL101984 Member Posts: 222
    edited October 2018

    I’d keep calling! Being your own advocate is the best thing you can do

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  • PatTheArtist
    PatTheArtist Member Posts: 13
    edited October 2018

    I called. PS office said "didn't you get the paperwork? Oh, wait, here it is, we didn't sent it to you, we'll drop it in the mail today." She then proceeded to say I need to come in to sign paperwork and for the doctor to put the markers on me. This has to be done the day before surgery and the only available appointment is 9:30am.

    Then I called the BS. They locked in the Oct. 23 date with the hospital just 2 days ago. I will need lab work and an EKG. They will email me the details sometime tonight or tomorrow. I have to call the hospital to make my own appointment for the pre-op testing and it must be done on Oct. 22 (the day before). I was told as soon as I get their paperwork via email to call and make the appointment as they fill up fast.

    I want to cancel the whole thing and find another hospital and team. I hate the way I have to follow up, bug them to get answers, and get this "we're too busy" nonsense. I am the patient!!! Without people like me they don't exist.

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  • sillyoldrabbit
    sillyoldrabbit Member Posts: 124
    edited October 2018

    Welcome PatTheArtist!

    Your experience does seem to raise some red flags. I would find it unsettling myself. It's so important to have trust in your team. Go with your instincts and please keep us posted.

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  • GAWarrior
    GAWarrior Member Posts: 398
    edited October 2018

    Sillyoldrabbit, I bet it's disorienting to get a reprieve. I feel like us TNBC'ers are given such a high chance of recurrence that it's almost inevitable it will come back. My MO says to stop reading things on the internet and Facebook (I'm in a tnbc group) because that's all you see is recurrence. He says people who are treated and get PCRs move on with their lives and don't post. He's right, I know, but I can't get it out of my mind. Congrats again! Also, he told me back at the start of chemo that tnbc responds very well to chemo because of the fast growing cells, so you're right about that.

    PatTheArtist, I hate to say it, but maybe get a consult with another surgeon if you can. If you're just starting this journey and this one can't get it right, that doesn't sound good for your treatment. I started with the surgeon who ended up placing my port and was supposed to be my BS. They couldn't get appointment times right, kept me waiting for an hour past my time, waffled on treatment and he wasn't sure if I needed chemo or surgery first, it just went on and on. I went through chemo first due to being triple negative, so there was time for me to find a new surgeon. Everything has been handled well at the new office and I'm very confident with them. Have you talked to an MO yet? I'm concerned for you that you can feel that tumor! The MO might have a recommendation for a new surgical team or might want you to start chemo asap. Good luck! It's a tough call when you feel the tumor and are this close to surgery to get it the heck out...

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  • sillyoldrabbit
    sillyoldrabbit Member Posts: 124
    edited October 2018

    GAWarrior, have you noticed that almost every article online about TNBC includes the words "poor prognosis?" Gee, so encouraging! This is where the wisdom of Pooh comes to the rescue for me. When I start thinking obsessively, "What if my cancer comes back or metastasizes?", I try to respond with "What if it doesn't?" Bad as TNBC is, still, most women survive it. My surgeon recommended a book called Anticancer: A New Way of Life. I haven't gotten very far through it yet, but one of the points made is that feelings of helplessness are correlated with a poor outcome. And the way to overcome the feeling of helplessness is to set about to do everything within your control to try to prevent the dreaded return. For me, this feels like where the real battle is. Every other part of treatment so far has felt passive - not a fight at all. I just sat there and let them poison me, then took a nice nap while they cut out pieces of me, and next I'll lay on some machine while they zap me. But revamping my diet, making myself exercise whether I'm in the mood or not - now, there's a fight. My BS, who has obviously seen enough BC, protects herself by working out daily, avoiding all processed foods, and mostly sticking with a whole foods plant-based diet. I'm taking it even further than that (following a Nutritarian diet plan and participating in a study), and every time I chow down a large healthy salad now or a pile of kale, I feel like I'm giving cancer a kick in the you-know-what. I know there are no guarantees. But I'm not ready to "go gentle into that good night."

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  • GAWarrior
    GAWarrior Member Posts: 398
    edited October 2018

    SIllyoldrabbit, very well put. I am generally a very positive person (in fact, my sister asked if I was delusional because I was so upbeat during chemo, lol). But, yes, I've noticed even here on this website, most tnbc articles talk about our poor prognosis. When I allow myself to worry about it (not too often because I'm positive that I beat this), I do try to remember that our survival rate is almost as high as everyone else's on here and that I should focus on the SURVIVAL rate, not the RECURRENCE rate. But, yesterday was not a good day. Surgery is a week from today and I'm getting nervous. I've been dealing with unrelenting back pain for more than a month that may or may not be related to the combo of chemo and my dental hygienist job, so I felt pretty negative. Today is a different day! Thanks for supporting me. :) I'll check out the book you mentioned. I'm interested in revamping my diet and lifestyle to a less stressful one once I'm through with surgery. I went organic the day I was diagnosed, and have eliminated processed meats (sausage, ham, etc), plus I'm trying to eat less red meat, but I still feel like I need a guide. I picked up a Clean Eating magazine and was impressed, so that's probably how I'll eat from now on. Next is eliminating toxic household cleaners. Like you, I'm not going gently, lol.

    kista, SLL101984, Proud_Patriot, BethM29 - checking on you - how are you all doing?

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  • Kat22
    Kat22 Member Posts: 111
    edited October 2018

    I have a serious question. I get it about trying to beat the hell out of cancer, today and 5 years and 10 years from now. But I question how do we really know what caused it to begin with? I'll be honest, I eat crappy. I'm totally a meat and potatoes gal, I don't eat vegetable and never have. YUCK. I'm averagelly active I'd say, I go through times where I'll work out like a beast for a few months then quit for a few months. I have NO family history of cancer. I'm pretty convinced that extreme stress is a major factor for why I have cancer, I went through some serious sh*t for over a year prior to dx. That has changed and I'm in a better place now but just being honest my eating habits aren't going to change once I get my taste buds back. IDK, I guess the question is do any of us really know why we're in the spot we are? I've seen plenty of women on here who lived super healthy lifestyles yet here they are. Not being critical of that at all, just pondering....

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  • sillyoldrabbit
    sillyoldrabbit Member Posts: 124
    edited October 2018

    GAWarrior, if you can deal with poking into people's mouths all day, I'd say you're equipped to take on any challenge life dishes out! :) Stress in itself can can contribute to back pain (a tight muscle is more easily injured), and I'm so sorry you have to deal with that on top of everything else. As far as revamping diet goes, some research indicates that going low fat is beneficial for TNBC (https://www.breastcancer.org/research-news/diet-we...). Shrug, shrug, shrug. Studies on the effect of diet are so contradictory. For us with TNBC, metabolic issues seem to be especially important. I've had borderline metabolic syndrome for decades - at least according to my PCP (hypertension, high triglycerides, belly fat). In my opinion, I think it's been full on metabolic syndrome. The only thing that caused it to be regarded as borderline was that my BMI was supposedly in the normal range and my fasting glucose was acceptable. (BMI is considered inaccurate by some, though, for women under 5' - which is me. My clothes and mirror told me I was overweight despite the BMI chart.) So, my revamping has mainly to do with trying to trying to get these issues under control. The thing that makes these decisions so complicated is that they need to be individualized. Doctors don't know enough to guide us. All they can provide are generalities. What works for TNBC may not work for other types. But, hey, maybe just making a reasonable plan of attack and sticking with it can give us a feeling of control, and that in itself is beneficial.

    Kat22, I'm sure this is the number one question lurking in all of our minds. It's like a perfect storm - a multitude of factors converging. My half brother is a retired doctor, and when I asked him, he said it happened because my mother did crossword puzzles in the shower. Funny guy. There are the usual suspects: genetics, lifestyle, environmental exposure, hormone treatments, onset of puberty, etc. And then there are all the yet to be discovered suspects. I wonder about the microbiome. When I look at the mind boggling complexity of the human body, it strikes me as a miracle that it manages to hold itself together at all. In my case, like I wrote above, metabolic syndrome is at the top of my personal list of suspects. But I also agree about stress, which is another area of controversy. I was extremely stressed during the two years right before my DX. Stress is known to weaken the immune system. Have there been any red flags in your medical history? For amusement on this topic, there's a thread on this forum that I think is sometimes hilarious: https://community.breastcancer.org/forum/7/topics/...


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