September 2021 Surgeries
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Elle, the procedure seemed like it was easy. They gave me a nerve block, so after I woke up I thought it was no big deal. I don’t think it fully wore off until I got home two days later. Then it was a big deal! I did cough twice at the hospital, which was extremely painful, like I was gut shot. Constipation can make abdominal tightness worse, and I’m prone to it normally, so I should’ve began some kind of diet that included prunes a week before.
I thought I had three drains, but I have just two and a wound vac over my stomach stitches. Day 5 and my drain output is pretty low. Lower back pain from hunching is the real killer! I got an rx for salon pas at discharge. I can use them over the breast drain area or back for 12 hours on and 12 off.
I’m glad I opted for diep flap. I was sad about getting a mx before. But waking up to a breast that is similar to my original was comforting and I didn’t feel any distress about it being from a mx at all when I looked at it! I had a hemi batwing incision and there’s a stomach flap of skin in that area, and it’s on the top where I can see it all the time. They were able to spare the nipple. I don’t mind the patchwork look of the flap because I’m so relieved at having the overall look seem so familiar. It’s stacked, and they used a Doppler to check for blood flow. I do worry one flap will “lose pressure” or something and will die, but I have confidence my ps can fix any problems. I think you will be pleased with the results, too
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Faith-over-fear, I'm sorry to hear you had such a rough experience! That must be very confusing and disappointing, and I'm with Waves2Stars in hoping your doctor has come up with a good plan by your next appointment. I also hope he or she is apologetic.
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Faith-over-Fear - I'm sorry to hear about the lumpectomy. I can only imagine how depressing that was to hear. I am so hyped up about my surgery tomorrow that that kind of news would really shake me. I hope you are rescheduled very quickly. Please let us know what you find out on Thursday.
Oddboood - I haven't heard from you in a bit, so I hope that everything is going well with you. I think you are scheduled for surgery the day after me, so I wish you the best.
Saltmarsh - So did hubby actually get you to the surgery as scheduled or was he "calendar challenged" that morning? Just wondering if you've had that Slippery Nipple yet and can you give the rest of us the recipe!
Waves2stars - Are you sleeping in a recliner or a reclining bed? I have a recliner but it isn't automated and didn't know if it would hurt to push the footrest up and down after surgery. I have a reclining bed, but don't know if I want to sleep in it and keep hubby up. I have a guest room bed, but don't have any really great supportive pillow. Yeah, I left this till the end and don't know what to do.
Tomorrow's my surgery. I fluctuate emotionally, between bouts of excitement and dread. I'm listening to meditative music right now. I can't have a glass of wine which is a challenge as it's my go-to relaxer. If I could do drugs, I might. But that wouldn't work because I have crappy viens. Covid test was negative. Hospital bag is packed. Animals have care. Kids have food.(Do they have to eat EVERY day?) I'm a little bummed that Stupid Covid rules say vaccinated hubby can't be with me that day. I guess the older I get, the more I know and the more nervous I get about hospitals. Never liked them in the first place. Okay, deep breaths. Take care everyone.
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Elle2 - I’m sending positive thoughts and hugs for tomorrow. You seem to have a wonderful team of doctors and they will take great care of you. Will be thinking of you 🤗
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Hi Elle2, best wishes to your surgery tomorrow
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Elle, you will do great! I have a genuine hospital bed to sleep in thanks to a relative. The push recliner would be a little painful to get yourself out of for potty breaks at night, but as long as your hubby or someone could get it upright for you, you will prob find it very comfortable. Don’t push your legs down to lower the leg rest at first because you could strain your stomach muscles. Sending happy thoughts and prayers your way
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Elle2, am thinking of you! Not sure what time your surgery is, but I hope today goes smoothly and you have a good start to your recovery!
Oddboood, I'm also hoping you're doing okay!
My husband did, in fact, take me in for surgery. He went home and worked until I was awake and could call to say, "Come get me!" I have not made myself that drink yet, because I didn't think I should whilst taking the antibiotics. Soon, though! And I have no idea if it will be to my taste, or any of yours, but if you want to try it, here you go: https://en.wikipedia.org/wiki/Slippery_nipple !
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My surgery went very well! The cancer is gone! My left breast is high and rather swollen right now. The only pain I have is just above the breast where he put in some stitches to the muscle apparently and under my left arm where the lymph nodes were taken out. My lower stomachs isn’t bad as it’s all bandaged and wrapped up. I’m still in the hospital and will be for 2 more days. I’m so thankful the cancer is gone. I didn’t realize how much I was stressing just trying to be strong for my family. It’s such a feeling of relief and a second chance to live a good life!
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Elle2, I'm so glad things went well and you are having a chance to feel that relief and relax a little!
I am just past one week post-op and everything here is looking good. I have my followup tomorrow afternoon, and I'm super-curious what they say about getting back to activity and exercise, because I feel good and I'd really like to get more active!
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Elle, I'm so happy for your relief and your feelings of having a second chance! That will bode well for your recovery! Please don't try to be strong for your family this first week; be gentle and patient with your body. Hooray for the tumor to be out!
Salty, is that the follow up the final step for you? Are you scheduled for any recon to the lumpectomy later? Also, are you scheduled for rads? It will be awesome weather for exercise shortly.
I had one drain removed today, as well as the woundvac/seal-a-meal. They won't remove the abdominal drain until I'm walking around a mile, heading in the direction of my previous activity level, because they think the levels are artificially low from limping around. But they said maybe Tuesday, which is still less than two weeks from surgery. They also said I can begin to stand up straight. I was afraid of ripping open stitches (always planning for worst case, eye roll), and I've seen pics of that happening. I need to trust the PS team because they've gotten me this far, and also because there's no way I can walk a mile with a cane!!!I like what I heard Gretchen Rubin say, “The days are long, but the years are short." I have had many long hours since the surgery, but the week went by fast.
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Elle2 - Great to hear that your surgery went well, wonderful news! Hoping you will be released soon to rest at home.
Saltmarsh - Happy to hear that you are doing and feeling good as well. Good luck tomorrow for your follow up!
My doctor called today with the pathology results. She said good news and no surprises. 0.7cm, the three lymph nodes she took out were clear and also clean margins. They sent a sample for oncotype testing and results are expected within two weeks. With grade 3 I know it’s more likely that I will need chemo but I am just relieved that the surgery is over and that I got the results. While my arm is still hurting I realize that what I struggle the most with is anxiety and staying in reality. The last two month were the most stressful in a long time and my mind tends to always go to the deep end which doesn’t help, but tonight I feel I can relax a little. I miss that feeling.
Hope everyone is healing well!
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Hi Ladies! I'm so glad all the September surgeries have gone well so far. I hope the recoveries go well as well!
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April_bc - Thanks for your helpful words. Now that the cancer is gone, I feel such relief. Your story was sad and funny at the same time. Our emotions get the best of us at times!
Salt marsh - you sound ready to go back to your usual life, full speed ahead! Slow down and make sure you’re fully recovered before you take on the world, because you can’t go back. LOL!
MarvieS - congrats on the great news about pathology! I’m glad it was small and hadn’t spread to nodes. All great news!
Waves2stars - it sounds like your doing remarkably well! Do you have any pain? What have they sent you home with for pain relief?
I’m feeling really good. The flap is healthy and healing, the lower abdomen doesn’t hurt at all. I know I’m still on IV meds for pain and wonder how it will be when I get home. The top of my breast is really sore and seems connected to my shoulder via stitches in the muscle, so I have limited use of left arm. Dr doesn’t even want me walking to avoid any pulling on the stitches as I lean forward on the walker. Night nurse wasn’t paying attention and the IV all drained into my right arm and hand and it swelled to twice the size of normal. So I have limited use of my right hand now too. Ugh.Hubby’s been keeping me comfortable here in the hospital. I might get discharged today, but tomorrow for sure.
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Marvie, that’s great there was no lymph involvement! Does your arm hurt from the lymph nodes?
Elle, I was sent home on a regime including Tylenol, gabapentin, Celebrex, and oxy. I was kind of scared two days ago when I saw I was almost out of Celebrex because it helped so much with the pain, but I haven’t missed it since running out. I have arm pain from the lymph node biopsy, some irritation at the outside hip edges of the abdominal stitches, and stomach cramping when I laugh or cough. I guess my nerves are irritated, too, because my whole stomach area feels like there’s road rash there, even though it’s fine. But really hardly any pain compared to four days ago. I’m glad your doctor is so careful with your activity! I hope you have a nice, easy transition home!
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Elle2 - I'm so glad that your flap is healthy and that you're feeling well overall. I hope your swollen arm and hand are back to normal by now. Were you discharged yesterday? How's the pain level at home?
Waves2Stars - Seems like your recovery is going really well! I'm so happy for you. Any updates on your abdomen drain(s)?
Ladies, I've never stayed in the hospital overnight before. I will stay for 3-4 nights after my DIEP flap. My husband can stay with me during the day but because of the COVID situation he cannot stay overnight, so I'm a little scared! I'd be thankful if you share your experience about what to pack and what to expect. Thanks!
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April, I was only ever at the hospital for childbirth, so I had no idea, either. From reading the threads, there seems to be a variety of preferences for how to pack for the hospital stay. Some women said less is more. This was true for me. My husband said there’s a Walmart within reach if we need anything. All I packed was toothbrush and paste, brush, chap stick, face wipes, cell phone charger, and discharge clothes. I wore extra loose exercise pants with a tie, loose shoes, a mastectomy shirt, and wife beater cut up the middle. PS and hospital provided bras, binders, panties and compression stockings. I thought of taking a robe for walking in the hall, but they can use another gown put on backwards to accomplish the same thing, and you won’t have to worry about disinfecting a pretty robe when you get home.
I should’ve packed shampoo and a hair clip because I was required to shower the day of discharge. We forgot a pillow to cushion the seat belt on the way home, but we used the dirty clothes bag, lol! I didn’t watch tv or read because I was so doped up and tired. Also, we have washed and reused the pack of hospital panties because they are so thin and don’t have seams that fold up under the binder.Hope this helps! What day is your surgery
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Had follow up with onco surgeon. Tumor was 2.1 cm. Pathology showed I also had 2.8 cm of DCIS also located in the breast. I guess it was too small for mammogram, ultrasound and mri to detect. My margins are good, 2 sentinel nodes and 1 internal mammary node were negative! I have follow up with oncologist next week to get started on meds. This process hasn’t been as terrible as I imagined, so I’m a little more hopeful for how I feel about the meds will change, too.
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April_bc - Waves2stars is right, less is more at the hospital. Basically, they have everything you need. I brought extra clothes that I did not need. I barely touched my iPad or magazine, and only watched a little tv, had my phone with the charger that was important. Used my lip balm to keep lips from being so dry after surgery and that was about it. You are on drugs and too tired for much. You have nurses, doctors, aides, physical therapy, occupational therapy, caseworkers, and housekeeping coming in continuously so that by day 3 you are READY to go home if just to get a good night's rest! Same COVID situation with me, so hubby stayed around and read during the day. I HAPPILY went home a day earlier than originally scheduled.
Waves2stars - my drug cockatil is the same as yours, but no oxy. I also substituted Ibuprofen 200mg every 8 hours for the Celebrex because my insurance wanted pre-authorization for it. I think that Gabapentin is amazing! I've literally has no pain since surgery.
I got the literal good news and bad news today at my follow-up. Saw the PS who said that incisions are dry and healing, the flap looked very healthy and that two of the four drains could come out. We talked about the drug cocktail they prescribe that is the antidote to the opioid crisis and I think it is brilliant as it is working well for me. No pain unless I don't think and move my body the wrong way.
The bad news is that pathology came back. The tumor was upgraded to Grade 3, and the only lymph node taken out involved tumor cells, though >200. Initially, my MS realized I was in that gray zone for chemo/hormonal therapy but didn't think I should be too concerned about the cells. She ran a quick test which I can not recall the name of, and it gave a recurrence odds of 22%. I was speechless at the possibility of having to deal with this yet again in the future. WTF! And to have to spend my life agonizing over a reoccurring! WTFX10!
So I know this is the case with many women before me. I will be on other boards looking for answers, as well as talking to my doctors. It's a grey area for treatment and a grey area of whether to take more lymph nodes out. Just an effed-up result I wasn't expecting today.
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MarvieS, I'm glad to hear there were no surprises and you had clean margins and no nodal involvement. Hurrah!
Same for you, Waves2Stars, and I also hope that none of this will be as terrible as you have imagined.
Elle2, I am sorry. I'm sorry your night nurse dropped the ball, and I wonder if your arm is back to normal now? And I also am sorry to hear your chance of recurrence is higher than expected. That's a lousy surprise. I'm glad you're healing well from surgery and haven't been in too much pain, and I hope your doc comes up with a plan you feel good about as you move forward.
April_bc, I definitely feel less is more when going to the hospital. I hadn't been overnight in years, and I was kind of worried I didn't pack enough, but I found I'd packed too much. Here's what I would bring if I had another surgery coming up: my phone, my reading glasses, a comb, something to hold my hair out of my face/off my neck, and a comfy outfit for the way home -- and maybe a pillow to cushion my chest on the way home. This past time I forgot that, but luckily my husband had an XLT sweatshirt he didn't need in his car, and I used that as a cushion. The hospitals generally provide everything else you need.
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Waves2Stars, Elle2, and Saltmarsh, thank you so much for sharing your experience about packing for the hospital.
Waves2Stars, I'm so glad the lymph nodes were negative. Hope the rest goes well as well.
Elle2, so sorry about your pathology result. You wrote that you are in the grey zone for treatment, may I ask what that means? Does it mean your oncologist thinks chemo/hormonal therapy might not be necessary or not helpful? If it helps, I'm a data scientist which basically means that I work with probabilities. I understand that 22% probability of recurrence is concerning, but probabilities are not too meaningful at individual level. Also, think about the probability of being diagnosed with breast cancer at some point in life for the general population, it's 1 in 8, i.e. 12.5%. It's high! But it shouldn't be a source of concern for every woman. I know your pathology result was a lousy surprise, what I'm trying to say is that you should not worry about a number. Just focus on your treatment... I'm glad that your flap is healthy and that 2 of the drains are out already!
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Elle, I can’t remember if you had oncotype testing. Might that have anything to do with the dr being on the fence about chemo? The bad news sounds pretty devastating. I’m glad you are at home, and hope you’re recovering well, and have some time to research or get another opinion.
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Thank you all for the well wishes, I had my follow up today and all looks good so far. The breast surgeon will call me as soon as she has the oncotype results. She said since I am 48 but already post menopausal (had chemo at 36), if my score is below 25 then just radiation, if it comes back 26 or higher then four rounds of chemo and radiation after. She also scheduled me to see the medical oncologist and radiation oncologist and I am cleared to return to work next week.
Elle2 - I am so sorry about your pathology results, that is a lousy surprise. I'm glad you are not in much pain and hope the other two drains will come out soon. I echo what saltmarsh said, hopefully your care team will come up with a plan you feel good about moving forward. Did your doctors mention if they will do the oncotype testing?
Waves2Stars - congratulations on clear margins and clear nodes, wonderful news. I'm surprised that the 2.8cm DCIS was not caught on any of the imaging tests. Always makes me worried what else might be hiding in our breasts. How is your pain now? My upper arm is still sore from the biopsy but the pain is manageable. Almost no pain on the incision. Got a bit of a rash on my arm (bumps under the skin), but my doctor said it's from the antiseptic.
Saltmarsh - Happy to hear that you are feeling good! How did your follow up go, did they clear you for exercise?
Macdebbie - Good luck for your surgery today. Sending positive thoughts your way!
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Macdebbie, I hope you’re doing well today!
Marvie, do you see the radiologist oncologist and oncologist before you go back to work? Are dates and times for radiation on hold until oncotype testing comes back?
The DCIS was scattered, so the measurement was for the total amount, not an individual mass. I was immediately concerned with the other breast, but the surgeon said the likelihood of it occurring on the contra lateral breast is low. Once again, I am not reassured because I am low risk as it is and look where I am. But I’m making an effort to live in the present.
Speaking of probabilities, April, does your background help you have a better perspective for your own treatment plan? Sounds like you have an interesting career
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Waves2Stars - The oncologist appointments are a couple weeks out since my Oncotype results are still pending. I was on short-term disability for the last ten days for the surgery and I asked my case manager what happens if I have chemo and cannot work through it. She said I can re-open my case and go on short-term disability again if needed. The insurance part is a bit confusing to me but still I am grateful to have it and if needed to be able to use it.
It's good to hear that your surgeon said that the odds of having it in the other breast are low but I completely understand your concerns, I feel the same way.
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Waves2Stars, I totally agree with what you wrote: "I am low risk as it is and look where I am." Probabilities/statistics only work at aggregate level. One in 8 women are diagnosed with breast cancer at some point in their lives, and that's accurate when you look at hundreds of women. But if you look at 8 women there's a chance that none of them develops cancer or 3 of them do. The probability that a non-smoker develops lung cancer is much lower than a smoker but there are many non-smokers who develop lung cancer and many smokers that don't. When we look at individual level, probabilities are just one factor to take into account to make decisions about our life choices or treatment options.
For me, I was diagnosed with BC stage 2, grade 3, TN, only in one breast... I could do a lumpectomy. And I was told that the probability of recurrence with lumpectomy (plus radiation) was the same as the probability of recurrence with mastectomy. Relying on probabilities I should have gone with a simple lumpectomy, but I opted in for bilateral mastectomy because I had lumps in my other breast as well and I just felt more comfortable with getting rid of both of them! That decision had nothing to do with probabilities, it's just my personality that I always try to minimize regret in all decisions. If my BC returns some day I won't regret that I didn't do a mastectomy. This is not a logical statement because the recurrence might have nothing to do with the choice of the surgery, but it just gives me some peace of mind that I did everything I could. This way, as you said, I can forget about the cancer and live in the moment.
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Hi All! I have a question about attaching the nerves in the DIEP flap surgery. My surgeon said that an optional step in the surgery is to try to attach the nerves in the flap to the nerves in the breast area. I'm sure that's not an accurate scientific description but you get the idea! He said that it might not even work. I was wondering if anybody here opted in or out for that optional step. My surgeon said my insurance might not cover it since it's not a necessary step. Any experience with this? Thanks!
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I asked my PS nurse about getting this, too, and wanted to know the additional cost, etc. She said they always try to do it, but sometimes there isn’t a nerve to attach to. I’m not sure if they were able to on me, but am planning to ask PS at follow up. I don’t know what that would look like during recovery anyway, since any nerve regeneration would likely be slow. From what I understand, it won’t feel like sexy breast feelings, but like being able to feel your calve or something. Anything would be better than nothing, unless there’s neuropathy.
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Thanks Waves2Stars, that's what I thought too, anything would be better than nothing! I just don't want to be surprised with an unexpected bill. Honestly, I have very little knowledge of how insurance handles the bills. I wonder if the insurance does not cover this it might not even be counted towards my maximum out of pocket which I'm going to reach anyways. I don't want to pay 10k+ for something that might have little or no impact.
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Hi Ladies - Last week, my dx was updated to IDC Stage 2A, Grade 3 which came as a complete shock to me. Now, I'm in that grey area of having a new bc, negative margins, but with isolated tumor cells in the one and only lymph node that was removed and dissected. Are they mets from the original bc 13 years ago that were just lingering about after Tamoxifen? Or are they the new IDC that escaped and are hiding out in the lymph nodes? The cells are isolated micrometastases >200 which is considered a zero. My immediate response was, "well, take out more lymph nodes to be sure you've got them all." My surgeon is worried about the 30-40% chance of lymphodema, which outweighs the chances of having additional isolated cells in the other lymph nodes. But a quick test (nonen-something) showed my chance of cancer recurrence would be 22%. The oncotype test was just ordered last week, so it will be a bit before I get that back. In the meantime, yesterday I got my drains out! Yay! It sure changes your mood to become mobile again.
MDA has weekly board meetings where docs present atypical issues at roundtable for discussion of treatment. My case has been sent up for the monthly meeting next week with members from the Houston facility as well. I'm confident that experienced group will be able to make the best decision for my case.
With my DIEP flap, I think the sensory nerve surgery is to try to attach nerves to the nipple so that there will be sensation. Since I have already had radiation, the nipple was unsalvagable, was removed and the flap closed was over it. My flap looks like the lollipop method they use for breast augmentations, without the nipple. Is that what yours resembles?
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Elle2, our procedures were different, so I can't speak to those questions, but I am happy for you to have your drains out! It's such a big win!
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