September 2021 Surgeries
Anyone else counting down to a surgical date in September?
I'm supposed to have reconstruction on 9/1 and I am psyched!
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I'm scheduled for a lumpectomy and sentinel node biopsy on Sept 9. Can't wait to get started with treatment, but I'm also nervous. I'm still trying to get used to the fact that I have this illness. I'm not sure it has really sunk in yet.
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Hang in there oddboood! You've only just been diagnosed, so it'll take a bit. It's a lot to wrap your head around. It wasn't that long ago that I was trying to do the same thing, and everything felt very surreal, and now I'm kind of "over it" and just looking at reconstruction and five years of tamoxifen, if all goes well.
It's great how quickly you're getting in for surgery, so hurrah for that!
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Yes, counting down the days for sure! Lumpectomy and Sentinel node biopsy on September 10. Also very nervous but looking forward to getting out of this stage and starting treatment. It does feel surreal and I still have not managed to handle the anxiety that has taken over since getting the diagnosis.
Wishing you both well with your surgeries and sending lots of good thoughts.
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@MarvieS -- For what it's worth, my anxiety ramped up leading up to surgery and my docs put me on a low dose of anxiety meds to help. I found that, combined with listening to some relaxing podcasts every morning while walking the dog, was pretty helpful for me! I hope you can find things that work for you, because that anxiety is stressful in and of itself.
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Hi Saltmarsh,
I'm glad you found something that worked for you. I saw my surgeon today and she was able to move my surgery up by one week, which calmed my nerves a lot. I am weird that way, I am not too anxious about the surgery but much more about getting the treatment started and moving out of this first stage of being diagnosed and waiting for the pathology results/next steps. But you are right that anxiety is so stressful in itself and to find something that helps relax our nerves is so important.
Wishing you best of luck with your reconstruction surgery. 14 more days 🙂
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Hi there! While this is my first post on this site, it is not my first breast cancer (BC) rodeo. Thirteen years ago I was diagnosed with Ductal Carcinoma in situ (DCIS). Last month, I was diagnosed with Invasive Ductal Carcinoma (IDC) and I'm scheduled for surgery on September 8. You would not believe how far cancer treatments have come in the last 13 years. Oncotype tests, immediate reconstruction, genetic testing for mutations, and various chemo treatments now exist that were not available to me before.
So, while I have been down this path before, there are more forks in the road for me to follow, and I'm learning all I can to make the best decisions for my care and treatment. I do find myself clenching my jaw often, having to tell myself that stressing is not going to help. I've started listening to meditative music again but my mind is restless to know all the answers right now.
I wish each of you a safe, uneventful journey to good health and will be here to support you along the way!
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Hello Elle2,
I'm so sorry that you got diagnosed for a second time. I'm sure this must be hard after 13 years. Like you and probably many of us I feel this is such a stressful time and my mind is restless. The meditative music sounds great, I hope it helps you to rest your mind a little. I wish you a successful surgery as well and hopefully we can leave this behind us soon.
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I’m scheduled for sentinel node biopsy and left mx on Sept. 14, with immediate diep stack flap recon. I’m starting to accept this is happening. I was hoping to get this done sooner, but figure timing is out of my control, but I can use the extra time to complete some important tasks I’ve been putting off for ages.
I never thought I’d go mx, but there’s a decent chance I won’t need radiation if, as they suspect, there’s no nodal involvement. I have a strong family history of heart conditions, particularly a-fib, so I’d rather put off even minor heart damage for as long as possible. To me, a-fib and CHF would be worse to live with than cancer. That is 90% of why I made this choice. The other 10 is that every specialist said the size and location of the tumor, plus radiation, would leave me with a significant deformity. The PS, too, said recon would be bad. I think I would rather keep a deformed, recon breast, but I don’t know how I would feel about that decision later. Like if it was on the right, or I was 57 and not 47, I would make different decisions about allof it.Elle2, I’m sorry you’re back in the saddle! Your perspective of how much change there is in BC treatment lifts my spirits. I hope and pray in another 10-15 there will be even better options with fewer side effects.
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Welcome, Waves2Stars. Love the name!
Everything is relative, isn't it? I understand weighing a-fib and CHF concerns against cancer. At one point, I was in a lot of pain and my doc was like, "Well, either it's this one thing that has no cure and is unpredictable, or it's ovarian cancer," and I was praying for the ovarian cancer and told him so, and he was like, "Why?" -- completely gobsmacked -- and I was like, "Because I don't need my ovaries anymore, and at least doctors understand and there's treatment for the cancer, whereas if it's this other thing, half the docs out there don't believe in it, I could end up having to change my whole diet (which I have already had to do) so that I'll never be able to eat socially again, be in pain for the rest of my life, and end up unable to work!" Sometimes cancer is the worst thing. And sometimes it's not.
Meanwhile, as I've been counting down the days to 9/1, I asked my DH today, "So, are we all set for you to take me in for surgery?" -- because he often has work meetings and sometimes forgets to ask for things like time off until the last minute -- and he was like, "When's your surgery?" *headdesk* It's in less than two weeks, it's literally the first of the month, it is one week before his birthday, and I just told him Saturday how I'd scheduled my pre-surgical Covid test for one week from today so it would be in the window of surgery. I could not believe he didn't remember. And then I reminded myself he's an adult who likely should be diagnosed with ADHD and probably could use some support dealing with scheduling/calendaring, and told myself to stand down. And maybe to make a backup plan for how to get to/from the hospital.
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MarvieS - I wish I could agree with you that we could have "a successful surgery as well and hopefully we can leave this behind us soon." My first bout is 13 years behind me, but I've always wondered, after hearing stories from others, whether it would return in the future. The future is here and now for me. Yes, the doctors consider this a "new" cancer, but the fear is always there, in the back of your mind....I learned to move on but it isn't always easy to forget you had cancer.
Waves2Stars - yes, the changes in cancer treatment are astounding. Both my diagnosis were from mammograms that were state-of-the-art, digital, can see what the naked eye doesn't etc. I'm a skeptic that cancer can be alleviated from our lives, but I'm a definite believer that early diagnosis and early treatment will render it less fatal in the years to come.
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"And then I reminded myself he's an adult who likely should be diagnosed with ADHD and probably could use some support dealing with scheduling/calendaring, and told myself to stand down. And maybe to make a backup plan for how to get to/from the hospital."
Saltmarsh - I had a great chuckle at that! Men...*geesh*
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Has anyone been told they have to stop taking certain supplements/vitamins before surgery? I started taking extra Vitamin D3, C and Turmeric and I'm not sure it's all okay for surgery?
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Elle2, I've been told to stop taking all supplements a week before surgery and to hold off on taking them again until I get the okay. I'm not sure it's always strictly necessary. Some supplements might interfere with -- or mask the effects of -- surgery or certain treatments, but I think there is also a certain amount of better-safe-than-sorry the hospitals are doing. If they don't know what your supplements might do, the safer thing for them to assume is they are dangerous and you shouldn't take them too close to surgery. The fewer variables going in, the more control they feel they have.
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I am new to the group. Diagnosed with invasive lobular carcinoma, stage 1 at this point, and 2 precancerous foci in right breast. Lefts breast has "suspicious" cluster of cells, non cancerous that doctor feels should come out. Scheduled for masectomy on right breast and lumpectomy on left on September 1st. This is the most overwhelming experience that controls all my thoughts. Hard to take in and have much normalcy to my thinking. My biggest fear is the unknown. When they do surgery and biopsy Sentinel, will they find more? Pet scans all clear, but does that really mean anything? So confused
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Fearoverfaith, welcome. I'm sorry you have found yourself in this boat, but at least you can try and sort some of this out here. Hang in there! Our surgeries are the same day, and it's not that far off!
The fear of the unknown was what was hardest for me before my first surgery, too, so I totally sympathize. I did best at the moments when I was able to compartmentalize and think, "At this next appointment, we're just gaining more information. When we know what we're dealing with, we'll deal with it! In the meanwhile, I will focus on [x]." I also made use of the Calm app, listened to meditative podcasts and humorous podcasts, and listened to a lot of music to help take my mind off of things. I hope you can find things that work for you to help you find even just moments of calm.
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Faithoverfear, It seems pretty common on the forums for us newly diagnosed to feel overwhelmed and like half of our brain is busted. It’s scary to have so much serious information directed at you, have to make decisions without feeling confident you understand what’s going on.
I don’t think they can guarantee anything about nodes until surgery. I’m choosing mx to avoid radiation, but it’s pretty much a gamble because they won’t know what’s going on in a cellular level until the surgery. I tried making a deal with the RO, like what if you find 5 positive nodes??? Can you just radiate that area??? No. What if it’s three?? No. What if it’s one? And I got a maybe we’ll see what happens. I also tried asking if I got a mx and super radiation, if I could skip tamoxifen. He actually said, “No deal.” LOL!!! Ask lots of questions, even if you think they’re dumb. Have a family member or friend on speakerphone during the call as back up ears and mouth. It helps to talk the info over later, like helps your comprehension. I’m glad you have a surgery buddy like Saltmarsh! She’s positive and calming
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Saltmarsh, lol about the husband!!!! I’m pretty sure mine knows the date, time and location of his fav football teams’s first game, and he wouldn’t have to even check his calendar if someone tried to make him go to work at that time! But cancer stuff is hard for him to remember. I try to keep in mind maybe half his brain is busted from this upheaval, too. I tagged all my appts in apple calendar, then shared with him so he can check dates and times a little easier. I’d like him to set up notifications the day before, that way he’s got a head’s up, even if only to explain why I’m suddenly pacing or weepy
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Saltmarsh, thanks so much. I will try more music, a great and easy solution to thinking too much. Do you find yourself pylling away from wanting to see people? Lots of good intentions I cant handle now. Hope all goes smoothly for you. Appreciate you sharing your experiences. Glad our date is soon so we can move to the next phase whatever it may be.
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Waves2Stars, I needed to hear that. This is so hard to not overthink things. When is your surgery? It is such a relief to talk to others going through the same. This site is a blessing.
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Look, with a serious dx, plus some mystery stuff going on, I think you’re right and normal to overthink it! I thought I had accepted things last week when I made my surgery decision and got the date. Then had panic attack Saturday night and have been second guessing every couple hours, night and day. You’re not showing a lack of courage, perspective or faith in your care team when you feel like this. You are a human woman, and there are so many little yet important things at play here, not to mention life and death And the worst is no guarantees! I hate that! But coming here has helped me cope and know others truly understand the mixed bag of fears and anxieties BC brings. I think I would’ve run off to Pittsburgh to work in a diner and forget about all of it if I hadn’t had all the help and stories to read here.
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Elle2 - I’m so sorry you have to go through this a second time and I understand that the fear of a recurrence or a new cancer will always be there, no matter how much time has passed. I hope to learn to move on too at some point but it’s hard to see it right now.
As far as the supplements and vitamins, I was told to stop everything one week before surgery.Faithoverfear - I echo what Waves2Stars said. I feel completely overwhelmed as well and the fear of the unknown and the anxiety feels almost paralyzing. I hope it will get a little easier once we have our surgeries/start treatment.
Saltmarsh - You give the best advice! I love all your suggestions and will definitely try music as well.
Wave2Stars - I was at the same point this weekend! My surgery is on 9/3 and I will be having a lumpectomy but my anxiety brain now thinks I should be having a mastectomy even though my surgeon said a lumpectomy would have good results. It’s just so hard making these decisions. I love what you wrote and agree, this community is a lifeline right now.
Hoping that all our surgeries go well and sending positive thoughts and hugs to you all!
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What is everyone up to this week? On Friday, I did my CT scan. They take a look at the veins and blood supply in my abdomen to make sure everything there is good for the DIEP flap transfer. That is how they are reconstructing my breast after the mastectomy. Anyone else going the DIEP route for reconstruction? I am also starting to prepare my bag for surgery. I have my pre-op appointments next Monday, meeting up with the mastectomy (MX) surgeon and the plastic surgeon (PS) doing the reconstruction and then just waiting. That will be the hardest time, a week sitting around wondering "what if..."
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Elle2, I’m having left mx with diep flap on Wednesday. I’m pretty much prepared physically. I thought I would be able to manage myself until asking a questions on another thread. I hadn’t thought how challenging it would be to get up off the toilet without help because I thought I could use my right arm to help pull myself up with a grab bar! I hadn’t even considered the stomach stitches and impairment! Also, I thought it might be a challenge to keep watch over the abdominal wounds alone the first couple days at home. I have a momentary nervous breakdown every couple of hours, suddenly, intensely, and almost like clockwork, like a geyser at Yellowstone. They called me to give me the golden ticket of an earlier surgery date, and I am so, so thankful, but I am not coping well emotionally. In fact, I’m posting right now because I suddenly woke up crying
But at least I’ve got my recovery area sorted and ready. I will pack my bag on Monday. I have dye injection and covid testing on Tuesday, but that’s it for appts. Got a hotel room nearby for my 5:30 am arrival (I live an hour away). I’ve been walking 3-4 miles a day to make sure my cardio was primed for this, but wish I had started ab and lower body weights when I was first dx. PS said to gain a few pounds, but it’s going to my thighs, not gut, so it’s not helpful, lol! When I explained the procedure to my boys, saying they were going to use a slab of tissue from my stomach, they both said, “Like a fillet???” Yes, it will be something like filleting a fish, lol! But I’m getting a diep stack, so really like a fillet artistically folded like Christmas ribbon candy, lol! I know PS are in the business of making money, but once again I am thankful ps married oncosurgery to make something like this possible
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Waves2Stars, fish fillet vs. ribbon candy? That's awesome.
I am going in for my pre-op Covid test today. Expect it to be negative because we have been on the careful end of things and I have no known proximity to anyone with it, but that said, the Delta variant has surprised people, so who knows, and fingers crossed?! Please think good thoughts for me! I get to start my weird Hibicleanse showers again tonight, so...hurrah? Just trying to tie up loose ends before I'm in recovery.
I am absolutely psyched to head into surgery Wednesday!
How are the rest of you feeling? I know it can come in waves when you are newly diagnosed, so I am thinking of those of you for whom this is really Step One, and I hope you are hanging in there.
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Maybe these are dumb questions, but since I’ve never had any surgery I’ll ask. Do you use it on your hair, or just body? Did they tell you not to shave your arm pits?
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I shampooed my hair normally the evening before surgery. I used the hibicleanse on my body both the day before and the day of surgery. I had shaved my armpits several days beforehand so any nicks would have time to heal.
After surgery, my PS had me stick to sponge baths until the bandages and first drain were removed.
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Waves2stars - Sounds like you and I are on the same path: left mastectomy, IDC same stage, and grade, hormone receptors and DIEP flap reconstruction! I didn't know about the stacked DIEP until later, but I plan to bring it up to understand the differences tomorrow. I get to chat with everyone, Plastic Surgeon (PS) mastectomy surgeon, Medical Oncologist (MO) and do another blood draw. I'll be exhausted by early afternoon. I'm at MD Anderson Cancer Center and it seems so state-of-the-art. Reconstruction immediately after mastectomy is something that was never even considered my first go-round. Consequently, I have been living with one breast larger than the other since my lumpectomy. Apparently, insurance companies cover reconstruction for as long after breast cancer surgery as you decide. That is a HUGE change from 13 years ago and one change I am so very happy to see. They finally understood that having immediate reconstruction is such a boost to a positive, quick recovery, for those who need it like me. I want to get back to being as normal as possible, as quickly as possible. Has your MO mentioned anything about chemotherapy or hormonal therapy yet?
Just ordered a pair of mastectomy pjs, and robe along with some silicone scar patches to help with the healing. I'm afraid my skin has darker scars than most. I heard Vitamin E is good for skin heaing? Does anyone else have suggestions for this?0 -
I assume you’re covid negative, Saltmarsh??? I worried, too, because we have friends who had different vax who still contracted it!
Thanks for clarifying TxLorelei! Love that name!
Elle, it’s cool you’ve got the same stats and surgery! Well, as cool as BC or surgery can be, lol! I didn’t want my breast to be way smaller, and with genetics being fine, ps decided to stack it. I know it’s “Stacked Diep Flap” but I insist on calling it a Diep Stack, or even Flap Stack, because it sounds funny, like the newest burger at Wendy’s or something. I just keep thinking of the trout fillet shape of the tissue since my kids said it, and think about it how they make pork belly into fancy shapes on cooking shows. I love that insurance has to cover symmetry, though I’m not sure I will use that option. I will have to be on tamoxifen. My oncotype said, even with multiple positive nodes, I won’t benefit from chemo. If I have to have radiation, I’m looking at MD Anderson for proton treatment. Are you less scared since you already had the lumpectomy? It’s wild to me you went so long without recurrence. How do you feel about that?
I read you should wait for the scars to heal before applying silicone strips or vitamin e. They should be able to address bad scaring at revision, anyway. I’m not sure about skin types, but maybe if it’s dark, laser treatments may help down the line. It looks like the biggest help for abdominal scars is making sure to stay hunched for a couple weeks to keep the tension light
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Just had my pre-op visit. Surgery (lumpectomy) is scheduled for 9/14.
It feels more frightening to me as things become more "real". I'm not a very good patient. I hate all the meds and inconvenience and worry about things going wrong. Even more than what the final results will be.
I can already tell these two weeks I'm going to be a stress ball which I know is not good for my immune system. Trying to stay calm. I'm only ever had one surgery in my life - for cervical cancer - but I was young - 30 and that was 33 years ago - so not as much fear and way fewer general chronic medical problems.
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Waves2stars - I think I'm using your term from now on, the Flap Stack at Jack in the Box! So I checked with my PS today about the "stacked" vs "flap" DIEP. He said that if someone is doing only one breast, and they don't have much breast tissue to work with,(ie they are thin) they will often "stack" which gives them a better contour and shape, In my case, I am only doing one breast, but I have lots of breast tissue to work with (ie big boobs), therefore, no "stacking" is necessary. LOL! Not sure if I believe that explanation, but there it is! The lumpectomy is much easier to recover from since it is typically just one incision to take the lump out and then closure. For me, it was a non-event in terms of recovery. I don't even remember having drains, but, of course, that depends on the size of the tumor being removed too.
I was absolutely LIVID that I was diagnosed with BC again 13 years later. I mean, seriously. this is a disease that never leaves you alone and just when you think, yep, that chapter of my life is over, up rears its ugly head. It pissed me off that I had to go through this all over again. But once I got past my belligerence and being pissed beyond belief, I realized how lucky I was and how thankful I should be that I DID keep going for my mammograms and MO checks EVERY year. Because it was caught early. It was also not invasive and once my breast is gone, I will *never* have to think about BC cells again, as my odds will be reduced to no higher than any other woman out there. Can I get it in the other breast? Sure, but I'll cross that bridge if I get there.
macdebbie - I know the unknown is frightening, but your lumpectomy will be smooth sailing! It is far easier than a mastectomy by a long shot. You'll basically be back to normal in about a week, max, and you'll feel much better knowing the dread cancer is GONE! Although I haven't been through it, I'm pretty sure that recovery from your cervical cancer was worse than your lumpectomy will be. For me, the Tamoxifen was way worse than the lumpectomy! I hated that drug, but everyone handles the drug differently and you may just sail right through your treatment.
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