August 2017 Surgery Group
Comments
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Hi Bella76
Getting the drains out was great right? I find the tightness from the SN removal the worst part for me, especially after not moving for a while, like after sleeping etc, but I can raise my arms over my head so it's not that bad .
Good luck with the pathology results. I'm sure all will go well. Let us know how you do.
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bella76- hoping you get good news today!
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bella76, good vibes for the path results!!!!
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Hi, all. I am a 66-year-old male just out of Aug. 4 left MX operation.
My experience has been mixed thus far. I had little time to shop for an onc because all the testing took four weeks to lock in the dx and I wanted that thing out of my body. The onc I selected is very slow to inform me of path and test results. I have had to call incessantly, and his staff refuses to learn how to post reports to the patient portal. Either that or, as he keeps saying, "they contain a lot of science you don't need to see." Very frustrating. And I let him know it.
I reacted badly to the anesthesia, and thank goodness that precluded me from going home the night of surgery. I promptly hemorrhaged and had to go back into surgery find a stop a nicked vein from bleeding and clean things out.
I'm now more than a week out and finally got the final path report in hand after our first follow-up meeting. I still have the drain and some staples left in the wound. I go back in a week and he wants me to see a medical onc after I heal up and the drain is gone.
Question: Did any of you with Stage 1 or less discuss having Oncotype DX or similar genomic recurrence predictive testing done with the initial path report? Seems like it should have been done in my case but the onc is telling me that is what the medical onc will do.
Good luck to all you August folks. Sending good thoughts you way
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I just had a core needle biopsy which shows I have 5 papillomas, one with ADH. I am seeing a surgeon on Thursday and want to discuss a bi lateral mastectomy as the stress of having check ups every six monthsand goodness knows what else for high risk BC doesn't appeal at all, especially as I am 65. I am very grateful that you are sharing your experiences as this is obviously life changing surgery. I don't plan on recon as my swimsuit modelling days are long gone lol! Anyway, the support between all the women on this website is inspiring and makes a person feel a lot less alone.
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DallasDuck, Hi I'm exactly one week out of a BMX. Had my follow up with Breast Onc Surgeon yesterday. She gave me the report and told me as I left that she ordered the Oncotype Dx test. I have not met with an Oncologist yet. Have an appt. for 9/1. Hope that helps. Maybe you can call and insist they send it out. I can't imagine it entails more than a call to the lab and ask them to set it up, though I'm not sure. Let us know how it goes.
Judeshome, I understand the anxiety of the 6month to 6month surveillance. That's one of the reasons I opted for a BMX. Good Luck with your appointment. Lol on the swimsuit modeling days.
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DallasDuck, i just came from the pre op appointment with the MO. he talked about the ocno test and said that if the BS thought it was necessary, that she would be the one to order it. but i know they do things differently everywhere. and i am so new to this, i don't know what's up or down sometimes.
when you say "oncogogist" is that just a general oncologist? and they're referring you to a MO? i'm glad you let them know you weren't happy. this might be an everyday occurrence to them, but it sure isn't the norm for the rest of us!
i'm sorry you had a bad reaction to the anesthesia, but SO thankful you were there to take care of your hemorrhage. that must've been really frightening. lets hope they can get you in to the MO quickly.
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hi everyone. I am home recovering after my bmx on August 9th. Today, so far, I feel much better...just exhausted pretty easily. I learned a tough lesson with all of this so far =-stay ahead of the pain. When I first got out of surgery I didn't do as well with the anesthesia as I did with my lumpectomy. Not sure why, but I was throwing up and in exceptional discomfort. It took a good amount of meds to bring me to a more tolerable level and the nausea wouldn't give up for a while. I don't think this is typical, as it seems most of the others posting came out doing well. I am glad to have that behind me for sure. Didn't help that the recovery nurse was asking me where my mother was because they had been trying to reach her and couldn't. I knew without a doubt my mom would have been by my side as soon as they gave her the OK. The nurse continued to tell me they can't get in touch with her anywhere. I told them something was wrong then and now I was worried something had happened to her . So, instead of recovering ,I was in and out of it, in pain, nauseous and freaking out about my mother...thanks to my nurse. Needless to say, I was so relieved when I was moved to my room for the night. My new nurse was amazing and made me feel comfortable and well taken care of. They discharged me from the hospital on the 10th. Thrilled to be home, but still exhausted and sleeping a lot. I tried to cut back on the pain medicine too soon and that turned out to be a BIG mistake. That made the drains painful to deal with...lesson learned...back on meds, even though they wipe me out. Have been sleeping in a lift chair that I rented cause I don't have a recliner and I am so happy to have it. Makes getting up when I feel weak so much easier and it's helpful for sleeping on my back, seeing I am a side sleeper. Every day is getting a little bit better or I'm sleeping and don't know the diffference lol. Best wishes for speedy healing to all. Now to get thru my next pathology report...fingers crossed..
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Okay, Dodes. Your response has propelled me to press for the test. I know it is covered by Medicare, but my onc didn't mention or offer. I wonder if it has to do with the fact I'm a male with this awful thing. The more I research, the more I realize we are such a small cohort, we really don't have good data on anything.
Pinkvictory - I know what you are dealing with. I was so nauseated post-surgery that they kept knocking me out with stronger and stronger stuff until I was numb to my hemorrhaging. When I sat up for the first time, blood just poured out of the incision. I don't blame anyone for the problem. It happens. But it sure is frightening when you are trying to power through all this. I am still taking the Tylenol/cod because the drain is so damn irritating and itchy/hurty. I am still draining 100 ml eight days out. I have read the drains for some have had to stay in more than a month, sometimes two. The day this one comes out is going to be a big drunk. I hate this thing!
Good thoughts to all you brave peeps.0 -
I am getting my BMX August 24th too. The closer it gets the more nervous I get as well. I just want to know if I will need chemo and how I will handle these drains.
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Hi ladies and gent!
I got my drains out today - so happy! I feel human again☺ For those who have not had surgery yet, my experience with drains was really not that bad - they are just weird and gross and remind you that you are limited.
My pathology report was not in yet, so still waiting on that. Otherwise feeling great - not much pain. Gotta start working on my range of motion excercises. I need to be careful to not overdo it now though. Slow and steady healing. I am wishing that for all of you, too!
One bad thing - my hair is really coming out. They say it is a side effect of anesthesia and surgery that usually happens 2 months later. So this may be from my two lumpectomies back in May. It's always something!
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Beachmama, I agree with you about drains - such an alien feeling! I feel like a new woman without them! My range of motion is amazing and today I was able to put on my coobie all by myself! Thank you for sharing about the hair los - I am losing a ton of hair and now knowing it might be a side effect of the anesthesia makes me feel a bit better.
Continuing to pray for all the August gals (and guys)!! Thank you for sharing your experiences and in turn helping me with mine.
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Hi everyone - looks like there are a few that are having Surgery 22,23,24th - Good luck to us all! MrsWinnie, LisaBS.
I called my BS and she said I would wake up with a medical camisole and they would send me home with a couple. the when I go in for my Post Op appointment she would write a script for a fitting for a customized Medical Camisole.
Weird about hair falling out - I've had several operations and never had my hair fall out or thin out. Must be the Cancer?
My Phy therapy (Pre-Op) said I can't move arms upwards until drains are out. Very-Very important to follow strict instructions to prevent Lymphedema. My MO wont even discuss Chemo until after surgery - since I have auto Immune disease - they want to observe how my body handles surgery. Rad is not an option for me.
Starting to re-arrange my house/things - putting things at belly level that normally I would have to reach. Stocking up. Finally had to go to Goodwill to find short sleeve button down shirts. I'm told I'll be in hospital 1 night providing no complications.
Thanks for the advice and support MommyErin, DogersGirl,Cyclegal,Judeshone and all! and yes, LisaBS, I too am nervous about surgery, chemo, drains..... as I said before - hopefully It won't be near as bad as our imaginations running amoke.
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This is my first post, but I have been studying these boards feeling very grateful for the information. I am so happy for the people with good experiences and post-op recoveries on this board.
I am scheduled for a lumpectomy and SN biopsy on August 29th. I won't have any drains, so it sounds less complicated to care for myself after surgery than others here. You are all awesome!
I am a bit anxious, but am hopeful I can get this done and behind me. I feel like I have been waiting forever for surgery since I was first diagnosed.
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hi dallasduck. I am so sorry you had a rough and scary experience coming out of surgery. I agree I am so tired of having these drains. Can't wait to have them taken out and then I assume I should be able to comfortably cut back on pain meds at that point.
I too find all of the research, testing and statistics on this diagnosis to be very confusing to say the least. I feel your frustration when we are just trying to make sense of it all. After all of the years of cancer research, you would think it would be much easier to decipher the information.
None of my doctors have mentioned onco type to me either and I am very upset that I have not been given the full picture. Maybe that will be part of my next report? I hope things get better for you and that you can get those darn drains out sooner than later. Not sure what the output is when they decide it's ok to remove them, but I have a feeling I will have mine a bit longer too...
Sending healing thoughts your way
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got my path report from my mastectomy and SNB and I couldn't be happier. There was a 3cm lump but only the centre was IDC 1.5cm the rest was DCIS. And lymph nodes were negative! No cancer cells found. And it was grade 1 not grade 2 like the biopsy said. That's quite strange isn't it!
So that means no chemotherapy and no radiotherapy! I'm so grateful and relieved.
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great news, bella76!!
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Happy to hear Bella
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My onc says I have to be down to a minimum of 10 cc's outflow for two consecutive days. I am at 50 cc's two full weeks from my MX, but I had a bleeding event the night of surgery that may have set back the timeline. The tube in my chest aches. I cannot wait to be rid of it.
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Hi, I am new to the site as well. I am 42 years old, diagnosed with ILC (infiltrating lobular) and I am scheduled to have MX with sentinel node biopsy on Aug. 25th. I am scared out of my mind about all of it. The surgery. Path results. Next steps. etc.. I was diagnosed in mid-June so it hasn't been too long of a wait but I am certainly ready to get it over with.
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I had my surgery on the 7th, lumpectomy and lymph node dissection. they took 3 sentinel and 6 others. the good news is that they didn't find cancer in any of the nodes. I am so happy. I am now waiting on the oncotyping and BRAC gene tests to come back.
On Tuesday when i went back to the surgeon who said he didn't get clear margins, and I will need another surgery, and that after this surgery I will need reconstruction. We can't do this now they want to wait for the other test results and let me heal before we do another surgery.
I am a little overwhelmed!
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Hi Wellwishes,
I had surgery on 8/7. I was diagnosed on 7/27 so it was quick..no time to think. BMX with reconstruction for ILC(well I went in thinking it was IDC from biopsy but came out with ILC) also with Sentinal node biopsy. I was terrified but mostly of anesthesia. Im scared of that stuff! My personal experience was once it was over and I was awake, I was glad I made that decision to do it. I had little if any pain. They did not offer pain killers and I was ok with that. They used Ketoralac which is like heavy duty tylenol before and after and it must have done the trick. I was up and walking that night and home next afternoon. Tightness has been the biggest issue for me, but all in all everything has been doable.
Deep breaths through it all if you can. It's scary but you will get through fine. You'll be on the other side of this in no time. Im still waiting on where I go from here, have pathalogy, need Oncotype score. Any questions, please keep asking, so many knowledgable women and men on this board.
Hi HarleyGirl,
Great that the nodes were clean! All the waiting is horrible. Im waiting for the OncotypeDX to come back also to see where I go from here. Sorry they didnt get clean margins and you need surgery again. That is rough. Glad you are feeling well.
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You have every right to be scared, WW. This is a raw deal we all have been given. But you want this thing out of your body and you have no choice otherwise. It appears you caught this very early. What is the grade of your IDC by MRI or mammogram?
HarleyGirl - sorry about the margins. That really sucks. Are you sticking with the same surgeon?
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Hi DallasDuck... I am not entirely sure what they decided on Grade level because I had another spot that was biopsied (came back benign). I want to say that the MRI showed Grade 1 but it might be a Grade 2. I had genetic testing done; went with the "happy medium" (17 genes + BRAC1 and BRAC2). All results came back negative. Thankfully, so this shouldn't have gotten passed down to my children! Whew!!
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Hi beach... thank you so much for your reply. Is the Oncology score something that comes from the path results?
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No. Your Dr. would send out the sample for OncotypeDx test. In my case my Breast surgeon sent it out after we went over my pathology report at my post-op visit. It takes about 7-10days and it looks over a small amount of your tumor tissue. It goes over a number of cancer genes in the tissue and gives information regarding the chances of your breast cancer returning and the likelihood that you may or may not benefit from chemo.
Ask your surgeon if he/she will be sending your sample out. You are going to do great with surgery...no doubt.
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10 days post BMX. Feeling good - took my kids out for pizza today. The drains may have come out a little early - I have some fluid accumulating under my incision. The nurse said it may reabsorb in a few days or if it gets bigger I'll have to come in and have it aspirated. Still no path report - looks like I'm waiting the weekend - boo! Praying healing prayers for us all!
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Hello everyone, I still have to get caught up and read everyone's posts on here yet. Such a wonderful group, I am so thankful for this site! I had hoped to post on here more often after I joined earlier this year, but had some other health issues popped up this summer and the fatigue from that laid me up for awhile. Previous to my cancer diagnosis earlier this year, I was recovering from a mild heart attack with stent placement (when it rains it pours). I am doing better now.
I am postop day three, had a simple mastectomy on the 15th, with lymph node biopsy. The procedure to map the lymph nodes went very well (I was so nervous about it), they numbed the area with lidocaine, and then only did one injection, I was so relieved. I was in and out it seemed, and all went well, what a relief, and I went home same day (my preference, the surgeon did ask if I wanted to stay, I wanted to go home). I'd had two previous lumpectomies, but the margins were still very very close on last lumpectomy, and the tumor was quite large, so we went ahead with the mastectomy (no reconstruction). I do have a question... I was surprised to learn today that there was absolutely no cancer present in the breast, I am very happy and relieved, but after two lumpectomies with so much extensive cancer and margins so close, I expected there to be some cancer found. Does anyone know if this is normal, or that it does happen? It seems odd to me that I go from having a very large tumor, with cancer on the margins of the last lumpectomy, and now no cancer was found at all in the breast (or maybe I am just being paranoid, as I had to switch surgeons after the lumpectomies after some very bad experiences with the first surgeon, so now I will admit I am suspicious). I am very glad no cancer was found, but it doesn't make much sense to me.... to go from extensive cancer, in the margins, to none at all now after mastectomy. I hope I make sense.
I had no pain untl day two, after the surgery... and now I am experiencing the most intense burning stabbing pain around the lymph node biopsy site, it goes back to my shoulder blade and armpit, very intense and makes you drop everything you are doing. I have read that this can occur, my other question is, is there anything that can be done to help control the pain.... lidoderm patches or lidocaine cream? I do take an oral pain med, and that does help, but this intense burning and shooting pain is pretty bad at times. I have read that this may be caused from the nerves? Appreciate any suggestions or advice. I did mention it to my surgeon this morning, and was real disappointed when he acted as if he did not know anything about this sort of thing, he looked at me and actually shrugged his shoulders. Sort of floored me, as he is quite a well known and respected surgeon here in my area, and very up on breast cancer. It was not the response I expected, and I do plan to discuss it more with him next week at my next appointment.
Thanks for reading my post, I wish everyone a speedy recovery,
Renee
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I wanted to add, other than the off and on pain around the biopsy site.. I have had almost no pain at all. Someone had mentioned that they were nervous because they live alone. I want to let them know that I also live alone, and I know it can be pretty scary while you wait for your surgery to come up. My imagination was far worse than the surgery was. I made sure I had everything I needed here at home, stocked up on easy food (just pop it into the oven or microwave) and laundry done and supplies ready to go. I felt good enough that I came home same day as my mastectomy (no reconstruction). I do make sure that I stay on a pain med schedule, I found this to be very helpful, and I write down when I take my pain meds and I take them round the clock. If you stay on top of it, it doesn't get bad at all. The drain has not been a problem, I make sure I have it taped securely. So, actually, living alone and going thru this surgery was not as scary as I thought it would be, I had rides pre-arranged if I needed rides (medical van service), and made sure I had my groceries and supplies that I needed. Found out that having a hand-held showerhead is very helpful, since my surgeon did not want me to get the drain wet, so I have been able to shower easily with the hand-held shower I have here.
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