Lumpectomy Lounge....let's talk!
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Yesterday was two weeks from surgery and Monday night the pain that was getting easier got deeper and worse. Afraid to let pain med wear off now
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I can't really speak to that. I didn't have pain that regular Tylenol didn't take care of. And I didn't have zingers from the nerves. My SLNB incision was very annoying but no zingers there. Are you lifting more than you should with your "bad" arm? Remember you did have major surgery and it will take quite awhile to heal. BTW, please fill out your profile and make it public - that helps us so much when we are trying to answer your questions.
HUGS!
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Well I went in today for my post op visit from my lumpectomy and SNB and it was not what I was expecting to hear. Initially during the surgery the two lymph nodes removed were negative for cancer. Today I was told my margins are NOT clear and also one of my lymph nodes came back positive. I was just in shock! We were all excited about the good news after surgery, now I am just terrified! He wants me to see the oncologist before the next surgery, so we can get her opinion as to what treatment options she advises. My surgeon wants to go back in to make margins clear, remove 15 lymph nodes and go ahead and insert port.... I was so hoping not to have to do chemotherapy, and of course I will have radiation after that. I cant imagine the pain of the lymph surgery, as having only two out has been terrible! Has anyone else had this type of diagnosis (that changed) and treatment? Of course I want to do whatever it takes to get rid of this awful crap! Im just worried, scared and a little overwhelmed! Thanks for any info!
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Meme2006, I'm so sorry. What a blow. Of course you will do what's necessary to kill the cancer but to find out the preliminary path report was wrong - so disappointing. I can't give you any help on a changed diagnosis but I'm sure others will. Gently giving you hugs and comfort.
HUGS!!
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Meme, so sorry to hear about the curveball you’ve been thrown.
Brithael and Shirley, prayers, hopes and healing energy directed your way for the upcoming surgery. This is the time to gladly accept all help offered to you--the hell with stoicism. It really IS “all about you” for the time being and don’t be embarrassed about “playing the cancer card” if you have to (e.g., idiot telemarketers & solicitors).
And though I am nearly two months post-op, nerves are continuing to reawaken and pathways reconnecting, and a scar formed beneath the SLNB incision (which had to be sutured after a seroma caused it to rupture). . My BS’ nurse warned me about all that. So I am neither distressed nor surprised about twinges, creepy-crawly feelings, etc. None of it has required any painkillers beyond the two Arthritis Tylenol I’ve been taking twice a day to make my aging joints behave.
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To Keep Walking and PontiacPeggy
Well I had the surgery I was frozen and had cold chills the whole day. Surgery was set to be at 8am they finially took me to surgery at 11:15am, which was 15 minutes late for my meeting with RO. They had to drain a serona before they could place the savi device for my Radiation treatments. I finially got to the RO's office at 3:30 and they were mad at my BS I wasn't seen there till and hour later then they did mapping and measurements for treatments starting Monday. They keep ervery part of that facility cold. I was shaking inside the entire day up there. I finially got home at about 6pm and turned on the heat and went to sleep after I took my meds.I was still shaking when I fell asleep.I woke up at midnight my dressing soaked and in pain. I called the emergency number for Oncology/surgery and they told me that they had drained a large quantity of fluid from my breast during surgery and that it will probably continue to drain heavely this was the first l knew of the dranage my BS did not tell me. I was concerned about changing the dressing on my own so I was told to go to the ER or wait and call RO in the morning. He said because I had been taking my pain meds the latter was my option as long as I didn't take anymore meds I could drive then, other option wake my son and have him take me. He had been up there with me since 6:30 in the morning so I didn't want to do that. Plus he has my grandaughter's Birthday to get ready for on Saturday. I don't want to mess that up.So now I am up waiting till I can call the RO's office. I have a slight temp (99.5) and m hoping the Bactrim will adjust that down. There is also bloodstaining in the saturated dressing along with the dark yellow drainage staining, plus I was told not to let the savi device get wet so that concerns me, Plus the cat leads are saturated and I was told not to let them get wet and the way the surgeon placed the device special care has to be taken with the cath leads and I am scared to mess with them. If I mess up then treatments will not start Monday as planned.
Please help me pray that morning will come soon to get this taken care of. The nurse and doctor on call both advised I not attempt to change the dressing on my own under the circumstances. I am praying you are sleeping well and will see this in the morning. I just needed to vent right now because this is scaring me. The way the BS placed the Savi I look like I have a potted flower and pot in my breast, the caths sticking straight up. Hope those are good heaking flowers in that pot.
Hugs to you I am praying for you for the needs of our friends on this site. Can't think of a better way to pass the time than to talk to the Lord.
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Shirley - you poor dear! You are having a rough time of it, and I am so sorry to hear that. I hope that you are now sleeping and that all will be fine until morning. However, if you are still scared it might be good to go to the ER and just get it checked out to have peace of mind and also to get the dressing changed properly. Can you call a taxi to take you? I know you don't want to wake your son, but he might prefer to help you get what you need at this trying time, especially with you having a fever. HUGS and prayers for you.
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Meme - I am so sorry to hear about the unexpected turn of events. It is certainly understandable how it threw you for a loop and is discouraging. But it may be that the oncologist's recommendation will be different than the surgeon's. Did you have an the Oncotype DX test done? You might want to ask the oncologist whether that could be helpful in your case to determine whether you need chemotherapy or not. Thinking of you and hoping all the best for you. No matter what, you will get through this! We are here with you! HUGS and prayers.
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Jhmomof4 and Marijen - I am sorry to hear that you are having more pain. I am almost 3 weeks past surgery and I would say that what you are experiencing is completely normal as long as you don't have any signs of infection such as redness or fever. My surgeon told me at the 1 week follow-up that the pain and weakness would come and go, better some days and worse others. I have experienced that - especially if I moved around and tried to do too much I would have more pain the day afterwards. In the 2nd week, I would almost need no Tylenol one day and the next couldn't wait for the 4 hour mark to come to take another dose. And the pain did seem to change locations and character periodically. I was glad that the surgeon had warned me so that I did not become concerned. I hope you experience less and less downs and more ups as days go on. Wishing you all the best and HUGS.
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Shirley, what an awful day you had! I'm surprised they didn't have heated gowns (heavenly) or blankets for you. I am always cold so I appreciated them. I hope that you get answers this morning and the RO sees you right away. Do you have Uber where you are? That's a good way to get places when you don't want to drive. It sounds like you are a bit put out with the BS, that you should have been told of the drainage. All very discouraging. Is the drainage any better this morning? Very gentle hugs to you!
HUGS!
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Jhmomof4....welcome to the lounge! For me I had off and on pains for almost a year. After a year things seem to be settling down for me. It does take the nerves a while to repair themselves. Best of luck.
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Jhmomof4, it doesn't sound unusual but you definitely want to watch for signs of infection. Try icing the area and take some Tylenol or leftover pain meds. If you continue to get worse or develop redness or fever you need to call your surgeon.
Meme, I am sorry you got disappointing news. Didn't they do pathology on the sentinel node before closing your incision? That's standard here. I ended up with two positive nodes so they took the whole fat pad associated with level one axillary nodes which was 9 total for me. My BS told my son (I was too out of it to remember) that she needed to see me Tuesday instead of my scheduled appointment of Thursday so I knew something was up. It turned out that I had extensive LVI and as hard as she tried she couldn't get clean margins. I ended up with a umx a few weeks later. I will be praying for you.
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Marijen, I am sorry your pain is increasing. I would say the same to you that I said to Jhmomof4.
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Hi Molly, thanks for thinking of me. The pain hasn't improved today, not bad enough to go in, not good enough to stop the pain meds, and I'm really getting tired of this. I have to go back Friday to get better margins, I hope that's all! Until the rads that is.
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Just putting a question out there (as I not-so-patiently wait for my Oncotype score to come back) for those who are ER+/PR+, HER2-: What was your Oncotype score and did you/are you doing/will you do chemo? And what kind?
Thank you!
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Thanks keepwalking. Well that explains it, exactly what is happening to me and it's not the worst thing. No I wasn't warned, if fact the BS's nurse went on a 10 day vacation as soon as she scheduled my surgery, and did not contact me after. I'm thinking these people who haven't had it themselves have no idea what it's like. I know I didn't. And it's not just the medical people, friends, family, people who say they will help and then don't even bother to look at the information I sent. Well I have young adult sons, and I'm getting a lot of concern but no helping to figure things out. And who knew we'd have to figure so much out on our own! 230,000 invasive breast cancer cases a year and an addition 60,000 with DCIS only. 40,000 plus die each year. There seems to be something wrong with this picture.....
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Marijen - When I had pain, it helped to make sure the ace bandage was tight. I wore both a sports bra and the wrap.
Meme - I understand your stress. I had chemo. The oncologist will be extremely helpful. They might recommend chemo then surgery, surgery then chemo, oncotype dx then decide, etc. The oncologist is the expert. Chemo is doable!
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KVGross, My Oncotype score was 13. I did not have chemo. My BS and RO never thought it an option (even before the score came back). My MO thought chemo would be good but he wasn't adamant and was comfortable with the tumor board's recommendation of no chemo. I'm doing fine. I had an Lx, 33 sessions of radiation and started Arimidex 13 months ago with no problems. I still have some issues with my underarm incision - I need to keep stretching regularly. And I find that I do better if my heavy lifting is done with my "good" arm - mostly because the muscles on my bad side get tender. Hope this helps.
HUGS!
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hello everyone. Well I am now a member of the lumpectomy board, regrettably. Here's my story.
I went for my yearly mammogram and ultrasound. Mammogram was normal but ultrasound showed something. I then got a mammotone biopsy which came back as atypical cells. Then I had the lumpectomy on Monday. My results came back today as a papillon tumor that was benign. I have never heard of any of this - papillon, atypical cells. I am small breasted but very dense fibrocystic breast. I have had calcification removed, abcess' removed and a lot of surgery on both breast but nothing like this before. This ductal papillon was large so my incision is big - 10 to 12 stitches with an ace bandage wrapped tightly around both breast. I am so relieved that this is benign but I just wish I didn't have either breast to worry about. Hope this doesn't happen again and does anyone know the chances of this developing again? Ug what women put up with ! ! ! !
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Liza12345, Welcome and sorry you're here. You already know that we are a great source of information, comfort and caring. I can't speak to your specific situation. Please update your profile and make it public. Then we know what your dx was, what was actually found (or not found, thank heavens). It really helps us answer your questions. Be sure to take it easy!
HUGS!
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kvgross, my oncotype DX was 13. I was going to have chemo until the TailorRX study came out right before my oncotype results came back. So even with two positive nodes and extensive LVI, no chemo. Just a umx and a large area of radiation.
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Welcome Liza! I am sure if you do a search on BCO you will find a lot of information on your dx.
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WHAT IS A BCO?
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Sorry! This website breastcancer.org
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Surgery went well on Monday, but the pre-op stuff sucked. Was worried that aValium wouldn't be enough for the wire placement and was right. I'm horribly needle phobic and cried thru the whole thing. Besides the bracketing wires, she also did one under my arm. I was given a dose of versed later for the SNB injection and it also did nothing. I knew and felt everything that was happening. They gave it to me again as they were rolling me into surgery. Did absolutely nothing. Never heard of versed not working! Weird! BS got clean margins and PS did a great job! Spent the night since I didn't go in until almost 5p. The girls look good😄 Got pathology report late Wednesday and the 3 lymph nodes were neg, so was all of the tissue that was removed. Yay!!! Have tried just doing 2 Tylenol for pain and it's really not enough. I'll take the Percoset, but hoping to be off of it by next week👍
Liza12345-BCO is Breast Cancer Org, this site. There is a search option for info
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Catfurr, OMG! Where was the lidocaine? Of course a Valium or Versed isn't going to help with pain. For the wire locators and SLN dye, I was given lots of lidocaine. And that did the trick. I'm feeling so sorry for you
Glad that everything else turned out great. Clear margins and negative nodes are wonderful. Sorry that Tylenol isn't quite enough for your pain yet. Keep taking whatever you need for pain. I'll bet you're happy to have chemo and surgery in your rearview mirror! Now you can look forward. Take it easy and let your body work on healing from the surgery.HUGS!!!
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Welcome to Lumpectomy Lounge, Liza! Your waitperson will be here shortly to take your drink order (and since your tumor was benign you can have booze--just not with your painkiller).
kvgross, my OncotypeDX score was 16, which, while not within the parameters of the TailoRx very-low-score cohort for which results are available, is still considered “low." My MO said even before that that she was 90% likely to recommend skipping chemo, and the score confirmed it. Because of my age, tumor size, grade (including low mitotic score) and profile, she said that with an AI alone the risk of recurrence is 8% and with chemo added to the mix 7%, so the risks of chemo outweighed the tiny theoretical benefit. I was also able--due also to the tumor’s location--to get accelerated partial-breast external-beam radiation (16 stronger rather than the whole- breast 28 standard-plus-5-boost protocol).
I was awakened during the night by sharp “shocky” pangs in my treated breast. Hard to say whether that was radiation or nerves healing--most likely the latter. But I rolled over and fell back asleep. Comes with the territory, I guess.
Brithael, let us know how you’re doing once you are in shape to get back online!
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Hi. I had my lumpectomy surgery on Monday November 9. How long does it typically take to get pathology report? My BS said she would have it by out post-op appointment on the 24th but will call if it comes sooner. Thank you!
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Scsa, I had my report in 2 days but I know others it has taken up to a couple or even three weeks. It's so hard to wait. While you are waiting, please update your profile to include your Lx and possible treatments.
HUGS!
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Pontiac Peggy, Yes I am a bit put out about his not telling me and so is my RO. When I got to the RO this morning he kept me there four hours to run anti biotics via IV and said to take the pills starting again tonight. I was dehydrated from the fever and when I got there it was 102 and his nurse changed the dressing and they sent samples to the lab so we had to wait for the RO to get the lab results back I got up there about 9 this am and just got home its 2:37pm now. I will sleep tonigh for sure he gave me some Valum and said to take one when I was finished with all I needed to do today. He said if the seroma drains again which he said it probably will; if it gets sticky yellow to get to the ER. He wants to start radiation Monday but if this gets any worse he won't. He said he went to the surgery to tell my BS where to place the savi device but he was finished and never mentioned the seroma. He said they were very busy yesterday but he is still put out abot it. The BS had his nurse call me to check on me this mornng and I told her I was going to see my RO to get the dressing changed an told her what happened last night and she said she would inform my BS that RO would handle it from here. I said the RO did not say that, then she said when the RO changed the dresing they took over. I said alright, sorry and she said good bye.
The pain is worse with the device in and it will be there seven more days, he can't do a boost because the device can only stay in 10 days max. Well I took a pain pill when I got home and it is kicking in, I think the Valum won't be needed for now. I am worn out. Take care. I hope the others read this cause I can't stay awake anymore.
Hugs sweet lady, thanks for the prayers they were answered again.
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