May 2018 Surgery Support Group
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So I flunked the pre-op EKG. All the doctor will tell me is that the computer decided it was abnormal. I have a cardiologist appointment tomorrow. I'm hoping there's nothing serious enough to interfere with my cancer treatment. Bleah.
In addition to that, my GI doctor keeps wanting me to come in for a followup from the gastroscopy and sigmoidoscopy I had a couple of weeks ago. I already know from the 'scopes that I have stomach ulcers (new diagnosis), esophagitis, gastritis, and duodenitis (old diagnosis). I told the lady on the phone that I'd follow up after I've healed up from surgery, unless the findings required urgent attention.
Could I just have one body part trying to kill me at a time please?
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Hi I am having a BMX with immediate reconstruction by Diep flap May 24. Looking to connect
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I’m scheduled may 24. Yours is today
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OMG! So did I.... I got referred Barack to my primary for clearaance though. My EKG appears normal but he computer said it isnt
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I’m not having any pre surgery check ups...I had to actually ask to make an appt with my breast surgeon and plastic surgeon to go over final things...should I be
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I askedabout pre-surgery check ups and was told I didn’t have to have any at all, which also slightly concerned me but I guess she said the surgery isn’t super invasive in terms of actual surgical procedure since they aren’t operating on internal organs, i.e. heart, liver, etc.
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I had pre-op testing, urine, blood, ekg and Chest xray. I also got to speak to anesthesia to voice my concerns. I then had to get medical clearance from my primary.
Lumpecotomy yesterday, two nodes removed and one positive for cancer. More waiting now for Oncotype to decide treatment place.
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Hey Kelli!
I had my lumpectomy and two nodes removed, one showed cancer, I am assuming its a sentinel node..Waiting for Oncotype now
Pain wise, not bad just sore where they took nodes. Wire guided needle was easy and painless and my dye was injected while I asleep.
Was a long day and wasn't thrilled that node wad affected but I will do whatever I need to do!
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ReadyAbout, Sending well wishes and a speedy recovery your way! Looking forward to your updates on how everything went today!!
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The only pre-op testing I'm scheduled to have is bloodwork. As I'm reading, I'm questioning if I should be asking my BS if any of these other tests should be completed prior to surgery?
Does anyone know if pre-op testing varies by the type of BC diagnosied?
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eo2378 ... I only had blood work done prior to my surgery. I had DCIS and did bmx right to implant. My plastic surgeon did have more pre surgery restrictions for me than the breast surgeon doing the removal, like when to cut off using other medicines, how many days to use special soap before surger
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Thanks mountainmama406. You're pre-op prep sounds very similar to mine. Stop taking any supplements and refrain from using certain products.
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I have also been wondering why I have no in-person final meeting with my BS or discussion with an anesthesiologist, nor pre-op testing scheduled in spite of my inquiry to Nurse Navigator and voicing my concerns...After reading Michi's post above, perhaps a bmx isn't considered "invasive," to surgeons, however feels pretty invasive to the patient! I must say, I have felt dismissed & passed over throughout much of my experience as a breast cancer patient trying to be informed and a self advocate within the medical beaurocracy of a major teaching hospital. My BS has a stellar academic & technical reputation, but seems like my questions & requests have been a bother leading up to my surgery. At this point I need to let go of my frustrations & "the fight" for what I need to ease my anxiety, & trust the skill set of my BS & the team that will be caring for me while I'm in their hands. Hard to do, and a leap of faith, but the frustration is not good for my state of mind and physical well-being if I stay in this mode pre surgery! Time to go inward; meditate, visualize healing, surround myself with love
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Marena, I'm so sorry to hear that you're feeling dismissed and passed over during this difficult time. That's awful to hear and certainly not how anyone should be made to feel when going through such a difficult situation. Frustrations are warrented, if you've not found comfort and compassion from your team of medical providers. You owe it to yourself to address these concerns. If you don't find comfort in the manner in which these are addressed, seek a 2nd opinion.
My personal experience has been the exact opposite of what you describe. I've felt very informed, to the point of being over informed. I've had numerous appointments and phone calls with both my BS and PS to answer my questions and concerns.
I wish you the best! Hoping you find the support and compassion in your medical team!
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Marena - I'm so sorry you are not getting the attention and care you deserve. I've always found the teaching hospitals to be the opposite so it's definitely surprising. Does your surgeon have a nurse or coordinator they work with? I have a direct number to her assistant for any questions etc. I did not have a follow up with the surgeon or any types of tests beforehand. Just our initial meeting after diagnosis to discuss treatment options. I had an MRI guided biopsy after that and we just discussed on the phone what she wanted to do. I was told that I was considered healthy so it wasn't necessary for any additional tests. Maybe that's what they are thinking and just not expressing well for you. My BS has answered any questions that I have had but she definitely has more of a clinical feel to her, very nice just not warm and fuzzy.Her assistant however has been very warm and caring as has the rest of the office staff. You deserve to be well cared for!
Nurseola - Can I ask how you know so soon that the node was affected? I feel like everyone seems to know but me as I am still waiting on pathology.
Question - Did you schedule your own appt with the oncologist or did your BS office? I have only seen a BS and there's been no discussion of the MO or RO yet. I know we are still waiting on results so I'm assuming that;s why it hasn't been discussed but don't want to wait if I should have already made a call!
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Marena-
I noticed you are in Boston, so am I and I’m using MGH for my hospital, surgeon Dr. Barbara Lynn Smith and Dr. Amy Colewell for reconstruction. Dr. Smith was a referral from my oncologist friend in Kansas City, she has been extremely caring and wonderful so I’ve really appreciated that. However, dr Colewell was pretty short with me, and her bedside manner certainly didn’t give me a warm and fuzzy feeling. I felt like I had to chase her down discuss pre-operative details, even at that I wasn’t speaking to the doctor herself rather her nurses which kind of annoyed me, but at the same time I understand she is very busy. looking back I realized partially this was my fault because I came to my appointment extremely unprepared. I didn’t ask the questions I should have and ultimately she explained what she was going to do to me in perfect detail. What my oncologist friend pointed out is that I’m not looking for a best friend, I’m looking for the best surgeon with loads of experience because that’s all that matters in the operating room where I will be asleep. (Not chatting about our interest) My oncologist friend said she was shocked to find most patients of hers choose their doctors because they get a good feeling, and in her medically minded brain she thought this was absurd and people should only be choosing doctors based on their skill set and experience.
At the start of this week I had a lot of anxiety about whether I was making the right decision, because we as human beings need to feel like, in addition to having the best doctor, we also click with them. At the same time I think it’s important to understand every doctor has a different personality, but at the end of the day if you are comfortable with their surgical skills that is what is going to matter.
I also consulted at Beth Israel, with a wonderful team of doctors who spent hours with me and I felt extremely comfortable with. It was a difficult decision to make but ultimately I felt my surgical oncologist I am choosing had more experience so I went with her, even though I felt a tad more comfortable with the plastic surgeon from BI. I felt it was important to choose two doctors who have worked together before and are comfortable working on the same team, while I wish I had that warm and fuzzy feeling with both Drs I do feel comfortable that I will be in good hands, and ultimately that’s what matters. We are fortunate we live in Boston and have the option to choose from an array of amazing doctors and cancer centers, wishing you the best of luck with everything but I did want to share my experience to give you some perspective.
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Kelligirl,
I also was told immediately after surgery that my node was benign. Apparently they send the node to pathology during surgery and get a result right away. After surgery they send everything for final pathology which takes several days.
When I first met with my SO she gave me a paper with a list of the ROs and MOs she works with and I had to pick them and call them myself.
Angela
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They definitely didn't send anything right away. It all went to a lab, the only thing they could tell me was it was soft and apparently that usually means a good result but they said they won't know for sure until all results come back. I'm back to waiting again which is driving me crazy because I feel like I've never really had a firm diagnosis yet. I did talk to the nurse and she confirmed that they will schedule me with the MO/RO at my follow up appt. She said they wait until all results are back to make sure we have clean margins and no other surgeries.
I risked a shower today and the first look at the scars. I have no words other than it looks like someone took a bite out of me :-( I'm going to have to go bra shopping for sure!
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Pleasantsa
I have my surgery tomorrow, May 18th. I am having MX w/ TE/reconstruction, and SNB. Thank you for putting the list together.
Lisa
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Faithmama- good luck. My BMX w/TE/reconstruction is scheduled for May 30th. I almost wish it was tomorrow the waiting is hard.
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Hello May Friends!
I am back at home - had the BMX, SNB, prepectoral reconstruction with TEs. The pain from the SNB injections was not too bad. They numbed the area up with lidocaine and I felt 20 seconds of stinging with each shot and then felt fine. The hardest part was getting up to use the bathroom several hours after I awoke from surgery- I was super wobbly/dizzy and my husband and a nurse had to help. I felt like I was going to throw up but then I felt great as soon as I got back into bed. And... to add insult to injury, my period showed up for surprise visit so the nurse had to help me with deal with that as well - whatever they are paying her, it's not enough. Nodes were clear (wahooo!) and the BS and PS said everything went well. The most helpful thing so far has been a post mastectomy sweatshirt that a friend bought for me on etsy. It has large pockets sewn on the inside to hold the drains and it's lightweight so I can wear it all the time. Here is a link for it. Post mastectomy hoodie
Good luck everyone - you've got this!
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My surgeon sent nodes to path while I was under, I guess they look under microscope right then and there. I will know more when I see her next week I hope and they have a final path report.
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Readyabout glad to see you’re home and things went well! Funny you mention your period, a lady I used to work with had a mastectomy and she also told me she woke up the next day with hers, they told her it’s her body reacting to what it went through. Don’t know how true that is?! Hoping i have a similar experience mlnday
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Hey, y'all -
Lumpectomy went very well today. The surgeon was actually waiting for me when I got up to the unit from registration because apparently everyone else's surgeries went quickly, so it was the fastest pre-op prep I've ever had. I got to the hospital (about a half hour from home) at 11:30 and was home shortly after 4, which is awesome because without my morning caffeine, I was seriously cranky.
So far, not a lot of pain as long as I don't move too much. My DH took me to my favorite place for an ice cream cone after dinner, and the bouncing in the car wasn't wonderful. I suspect that I still have a fair amount of lidocaine rolling around in there, thought, and I've had enough other surgeries to know that tomorrow will likely be somewhat unpleasant, but all in all, I couldn't have asked for a better experience.
I will say I'm a little surprised by the size of the incision. The initial papilloma was .9 cm x .7 cm, and the biopsy site was twice that, so I was kind of shocked to see that my incision runs counterclockwise from 12 noon all the way to 6 around the edge of my areola. When I raise my arm, I can really tell that the underside of my boob is mostly missing on that side. Like Kelligirl said, it looks like someone took a bite out of me.
Hoping that pathology is back before my post-op follow up on Wednesday a.m. I'd like to just get on with it, whatever *it* is.
Kelligirl and Ready, hope you're recovering well, and don't have too long to wait for your final results. Also, all of you other early May ladies, I hope everyone is on the path to better days. And for those of you still to go under the knife this month, you're all in my thoughts.
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Kandyhunt: Thank you! I totally agree about the waiting! It’s torture!!! Mine is in the morning and I already feel like a weight is lifted. I guess the weight of the wait!
ReadyAbout! So good to hear from you and hear how well you are doing! I was thinking a lot about you. Thank you for the update!!
Nurselola73; Back to the weight of the wait! Makes me think of Tom Petty, “The waiting is the hardest part” I hope all your news is good. Relax if you can and take good care of yourself in the meantime
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Well the pre-op screening went to hell in a handbasket. The EKG at the surgeon's office came back abnormal, so I got referred to a cardiologist, who repeated the EKG, said I'd had a heart attack some time in the past, and now wants an echocardiogram and nuclear stress test before he can clear me for surgery.
On the drive home (3 cities away), the gastroenterologist called, and THEY want me back for CT or MRI because the abdominal ultrasound showed a lesion on my liver that "could be" just a cyst. But to go ahead with the BMX before following up because after all, Mucinous Carcinoma is the "best" cancer because it "doesn't" spread.
Considering how the rest of my routine screens have gone this year, I'm not entertaining any illusions that everything is actually fine.
FML, seriously.
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Thank you Michi & Kelligirl5 for sharing your experiences & offering some perspectives for me to consider. Indeed I am grateful to be in Boston, a hub of excellence in medical care, and ultimately I do trust I will get the best of care through my surgery experience. My sister, who is an Ob-Gyn, shared similar input -many great surgeon's have limited relational skills, but they do what they do superbly which is what you want! Truth. I will be ok. :
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FasterPussycat-- WOW that is crazy about the heart attack. Please keep us informed of your journey through this wait.
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Met for the final time with my surgeon today before my BMX on Monday. She always seems to put me at ease. If all goes to plan I will be having a bilateral nipple sparing right to implant mastectomy. She will be able to access my lymph nodes through my mastectomy incision, but will need to retract me more on that side so I will be more sore there. Her being able to do that was surprising to me as everyone else I’ve encountered had a second incision. I never wish for time to pass by especially a weekend but I am so ready to get this surgery over with. I know Monday will be here before we know it and my nerves will kick back in! I think that final pathology report has me more anxious and nervous than the surgery!
Glad to see everyone that has gone in already this month doing well and healing. And for those who are still waiting to go...you got this
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I will be scheduled for June 2018. Plastic surgeon meeting is on June 1st. Double mastectomy. Surgeon says that implant will be either saline or skin grafts. I heard skin grafts are really painful (although they apparently are appealing to sum because you get different body parts sculpted) My oncologist says the healing is more difficult. (various body parts instead of just breasts) I need to get back to work. I want to begin working part time in week 3. I do not have a physically demanding job. Any thoughts? Experiences?
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