Lumpectomy Lounge....let's talk!
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Got my oncotype score: 27 intermediate range. The good news is, having grade 3, the 18% metastasis likelihood actually looks good to me. Other good news is my surgeon is going to get a mammaprint done too so that I can make the chemo decision with more info. The bad news is, I have to wait a couple more weeks to know: even if the outcome is chemo, I'm tired of waiting on the fence to see how the next few months will play out. Does that make any sense at all?
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I had lumpectomy 2 locations right breast for DCIS and removal of 2d benign area, and matching reduction on left at same time 8/13. Am glad I did. No drains, feeling pretty good. Bad news is off they come this Friday, path rept showed invasive tumors on both breasts, so having double mastect. And then who knows what further treatment. But my point is- if you are considering reduction/matching surgery if having one side done, Id advise to do it. In theory aside from radiation, Id be done with surgery now and have a nice perky set to show for it. Hoping I wake one day in 6 months and the rebuilt ones look the same.
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Hi, PatAlameda,
Too bad you have to wait a couple more weeks to find out about chemo. I too may be waiting even longer for my answer. Yesterday my onco office called to say the genomics lab hadn't even received my samples til yesterday. Also, my onco had been out of the office and hadn't gotten my pathology reports or anything, so looks like the results will be at least another 2 weeks out. Now I am starting to wonder if they're even necessary. What with all the recent developments since the last time I saw my onco: larger tumors, both sides, and micro mets in the sentinal node. I wonder if those things alone would determine chemo? Also, it seems like so long between starting chemo or rads or whatever and the surgery date. Is there a deadline to start?0 -
L2girl,
Thanks for the sympathy. I know I should be grateful the score wasn't worse, blah blah blah, but the waiting isn't fun. I want to just make decisions and get on with it (the key is the RIGHT) decisions...
I don't think you need to worry about a delay. They don't start doing more things to you until you're a month past surgery. If they start chemo or radiation before we've healed from our surgery, then that healing would be compromised. Breathe. (And I'll try to follow my own advice. :-/0 -
Have my first RO appointment Thursday. New patient coordinator said it's basically a consultation. Will RO need any new mammography images? I can't imagine when my right breast will ever be ready for that again!
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Teacherbc1
He will probably have your previous mammos..
Vickie
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Have any of you tried acupuncture? I had a first session today. It is covered by my insurance so thought I'd give it a try. It is supposed to help the pain and speed healing. It was slightly uncomforable, but not bad. I go back tomorrow.
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sereamuse...interesting. Let us know how it works out for you, I would be interest to hear.
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Serenamuse,
I've been having acupuncture. I know it helps me find some calm and happiness in my here and now. I think it gives me more energy. I cannot tell if it speeds healing. That's my experience.0 -
Hello All...
Newbie here. I was diagnosed with Stage 0 DCIS on August 8th and having a lumpectomy this Friday (23rd).
I'm so glad to have a place to go to talk to others in the same breast boat
I'm nervous about the surgery (never been put under) and the wire localization beforehand. A few people have replied that the wire didn't hurt. I was told everything from "hardly felt it" to "worst pain of my life".
I had a bad experience with my core needle biopsy and I don't want anymore pain (I was rushed to the ER after my biopsy).
Can I hear some reassuring stories about surgery please? I really need them.
Thanks
Kirsty
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Irishdancing...
I had never had surgery myself before my lumpectomy. I also had wire localization and it was no pain at all. I think it was easier than the biopsy (the wire part). I had about the size of a kiwi removed and felt no pain until the next day and it really wasn't too bad. I was surprised by how fast I healed and how good I felt. She was not able to get the port in which is a bummer because I am doing that this Friday by a specialist. I am hoping with all their experience that it will be a breeze.
Wishing and praying for all the best to all my sisters.
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Thanks for sharing Pat...I am keep acupuncture in mind
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Kristy, Sorry you need to be here, but this is great place for information and an even better place to find understanding 'listeners'. I have had two lumpectomies and a sentinel node biopsy. I did not have a bad time with any of them. The wire localizations weren't much worse than a mammogram. All surgeries were done on Thursdays and with all of them I was able to go back to work on Monday without any problem. I think a lot depends on the location of the problem area. Here's hoping you have an easy surgery and a quick recovery!
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Hi Kirsty,
I can't help you with experience, but we are having surgery the same day, and I have a couple of wire localizations to get through as well. Hopefully, we will both sail through the procedures. We can compare notes after it is all over.
Good luck for a pain free day.
Ridley.0 -
Irish Dancing and Ridley - Glad you found us. This is a great source of information and a terrific support system. I had my first lumpectomy on 7-30-2013 with wire localization. It truly didn't hurt. They will numb the area with a little lidocaine and it is a tiny needle and the wire is like a thread. It is pretty quick. The lumpectomy also went well and I had little pain - just took tylenol. Back to normal in a day or two. Just had a re-excision of my lumpectomy and a sentinel node biopsy yesterday. Pain is a little worse then first time because dealing with two incisions but am just taking tylenol. I wish you both easy surgeries with good outcomes. The worst part of this whole thing is waiting on pathology reports. Sending healing thoughts your way. Marilyn
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Irish Dancing and Ridley - Welcome. I had my lumpectomy and SNB on August 8th. I too had the wire inserted and that was not any issue. I have not had and severe pain from my surgery locations. The only issues that I have had has been swelling under my armpit and then shoulder pain from carrying my arm funny due to the swellling. I will have a recission in two weeks (I hope). I am really praying that there is not much pain from that and since she will not be looking for anymore nodes - no more swelling. I see my surgeon Friday to go over my pathology report from the first procedure.
I will be keeping you both in my prayers.
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Thanks canuck46 and travel mom. I'm sorry to hear that you had to/will have to have re-excisions. I hope you both get clean margins this time. That's one of my buzz phrases for the week -- clean margins -- along with "no spread to the lymph nodes"
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Irishmom,
Stay ahead of the pain. Whatever they prescribe after surgery, ask for a dose before you leave. Take as prescribed for at least three full days. I thought I was good on day 2 and paid the price. I found it hard to manage pain after it was full blown. A comfortable tight fitting bra worn 24/7 for two weeks also helped. i tried a day without one on day three and regretted it. I guess I tried to push myself and didn't benefit from that. I know everyone's experience is individual but that's what I have to offer. Best wishes! And as I have learned to say...we'll be in your pocket!0 -
Hello ladies! New here, and have my lumpectomy scheduled for next Thursday August 29th. I see the surgeon on Monday to get everything squared away. THis was quick - mammogram was last Thursday, biopsy was just 2 days ago, and on to surgery. That's fine with me, let's git 'er done and get this over with!
I have a question - how long were any of you off work? I have DCIS in situ, in only one duct. It's a shallow lump too, so probably a pretty quick surgery. I'm able to get short term disability through work, so no worries there, but I've heard lots of variables on how long people were out. I have a desk job, nothing strenuous.
Also, I'll be having radiation treatment for six weeks, 5x a week. Not sure how that will affect me.
Thanks!
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cynthia, we all heal differently. I decided to take a Tylenol and lie around and read the next day, and then resume my usual tasks the following one. I found my LX to be the easiest of my cancer treatments; chemo and rads were more difficult to deal with.
Good luck,
Carol
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Welcome to the Lumpies, Irishdancin, Ridly & cynthiaintx--
Irish... I too had a very bad experience with the stereotactic biopsy, lots of pain and nearly passed out! When subsequent screening showed another area which needed biopsy (MRI guided this time), I asked for something to help me though it, and got Xanax. I took two before the procedure, and it was SO much better!!! So when it came time for my partial mastectomy with wire localization & SNB, I also used it then. It really helped me cope with the wire localization (which was a tiny bit uncomfortable, but not bad with lots of lidocaine), and the injections of the radioactive material for the SNB -- there was lidocaine cream (which I had to argue for ) but still felt like 4 bee stings... With Xanax I didn't freak, and all was well.
The recovery from surgery has gone well, so well that I have taken a trip out of state, only 3 weeks post surgery. Much depends on location of the area removed and how the nerves are disrupted. Mine was pretty extensive (about 1/8 of the breast) and I had oncoplasty too -- still didn't need Norco after day 3, but took Tylenol every 6 hours until 2 weeks out. Still getting some zingers....some say those last a couple months. My glue is gradually coming off, and scars don't look too bad so far. I have a large incision in the shape of an anchor -- all the way around the areola, then vertical to the crease below the breast, and about a 7 in curved incision in the crease below the breast. You may have a MUCH smaller incision and area to heal, so you can't generalize much from everyone else.
Bottom line, listen to your body, drink plenty of fluids, take care of that arm, and go slow... Baby steps back to your usual activities. Breathe -- you will be great! We are all in your pockets!0 -
Just discovered this thread and think I may be a bit older than lots of you. I'm 63 (and can't believe it!), and had a lumpectomy at 60. Also, I had ILC. The worst thing for me was the wire locator experience. My surgeon had taken special training to insert it herself while I was already anesthesized, but prior to surgery I was taken to the mammography section for "more pictures", which I didn't question. Sounds reasonable, right? A radiologist came in and said he was going to insert the wire, and although I protested that the surgeon was going to do it, he said no, I couldn't be under anesthesia for that procedure. This was the worst part of the entire process for me--just a harrowing experience. At one point, the dr. had to withdraw and reinsert the wire because I "moved". I moved?? What did he expect? So many of you have had such easy experiences with this, but mine was not. No lidocaine, no emla cream, and no way to prepare myself beforehand. The pain was worse than anything else I had. Apparently, though, it had a good outcome! My surgeon was livid because the radiologist hadn't "listened to the patient", and now the entire procedure has been changed. Also, I was not charged for the 35 radiation treatments that followed the surgery, so that was a bit of victory for me!
Anyhow, I had lumpectomy, then a re-excision for clean margins, then the rads, and now take arimidex. There was a scare at the first post surgery mammogram when calcifications were found. I had a stereotactic biopsy (no pain except the emotional) and it was benign. My oncotype dx score was 11, so no chemo. So far, so good!
Like Kim said, it's baby steps all the way, but baby steps are forward steps too. Hugs to all.
Kathy
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Hi Lumpies
Sorry MIA hubby in ICU
Ridley - will be in your pocket tomorrow ...you've got this brave warrior! Breathe, there's is such relief after crossing over. Sending sweet dreams and speedy healing thoughts and prayers.
QCA - welcome to to the lounge...sorry your experience was so difficult, but glad you are 3yrs doing well encouraging.
Cynthia - welcome...your team is moving quickly...so breathe:) you will be surprise how great you feel after lx&snd , but baby your arm...don't over do! Pace yourself work. Rads is a breeze but a daily grind...most import is to hydrate eat extra protein and rest. Hydration s critical so drink up:). You will be fine warrior
Irishdancingmom - breathe, relax...you will be fine! Ask questions...if you need something to take off the edge your team may give Xanax, also ask for numbing cream on girl before nuclear med shots...feel like bee stings...squeeze techs hand...ask for something for nausea prior to surgery...wear comfy yoga pants zip front top flip flops ...let family pamper you at home ...watch the arm...take a stool softener ...those pain meds.
Seeing happy thoughts and prayers!
Ridley ad Irish - here's to clear Margins and nodes!!!
(((Squeeze))) to those that have received results less than desired...Lumpies are in your pockets! And yes, a lumpie is a lumpie no jumping out of our Lounge...couldn't we've got you surrounded in lumpie luv:)))
(((Hugs to all)))
Cindy0 -
cynthiaintx,
I took a long weekend for my excisional biopsy and a week off of work for the LX and sentinal node biopsy. It took me that long to get over the anesthesia alone on the second surgery, which was much longer.
Sounds like your LX will be rather minor surgery, but it you have a sentinal node biopsy then you may need that full week. With DCIS, I would fight to avoid the SNB unless your DCIS is determined to include invasive cancer in the pathology report. Not sure what the standard practice is for DCIS.
I work a desk job too.
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I have had two acupuncture treatments and go back today for my third. The shooting pains have nearly all gone and I'd say the achy pain is from a 4/5 down to a 2. I'm in week 3 post surgery. The process itself is not pain free. Most of the needles are painless, but several that are near my incision really bother me for the entire 30 to 45 minutes under the heat lamp. Looking down at my breast it looks like a pin cushion! There are places on my face though that give immediate relaxation, so it is a strange experience of give and take. Afterwords though I am tired and just want to nap - which is what Dr. Sung tells me to do "Sleep is better". I'm pretty stubborn and want to do everything I can to get back on my feet. I had not anticipated that recovery would take this long. They day of my surgery did not go well though, I fainted during the insertion of the wire locator, the surgeon lost the metal clip and had to go back into me to try and find it, another surgeon came in and dug around as well. They brought in a fluroscope to ex ray my breast - which indicated it was gone - but they still needed to know where it went, finaly found it in the blood canister where they initially sucked the excess blood out. I was on the table though an hour longer than expected, so the surgeon later told my husband what should have been a stage 1 recovery had become a stage 3 recovery. I wish I knew what that meant! So much of this process and recovery is just facing the unknown. I am still dealing with nightmares and anger - sort of like a grieveing process. I think it is different for all of us. I tend to "feel" more than most, pain wise and emotionally. Oh and I should point out that I'm not taking any pain medication while doing this acupuncture treatment.
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Kathy,
I had previously had such a painful experience with the steritactic biopsy that I was terrified about the wire insert procedure. I had told them this and the night before they gave me something for antianxiety. I was still loopy when I went it and I told them I felt faint. I fainted as he was putting in the needle, and knocked it about. They had to reposition it. It was not fun! My surgery was also over complicated (explained in another post) so I ended up rather angry about the whole thing.
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I have a strange question. Last night my husband and I had sex for the first time post surgery. (week three) My orgasm radiated to my healing breast and stayed there for minutes in waves of intense pain - like all the nerves were on fire, but not in a good way! Have other people had this?
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What is this wire thing??? Does NOT sound pleasant!
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Thank you for the welcomes and the good wishes. I'm home and feeling pretty good. Tired, but not too much pain as long as I don't move:)
Dye injection went fine. Wire locs were a little more painful - mostly the freezing. I ended up having 3 plus one redo as the tech hit the release button mistakenly on the mammo machine before the wire was inserted. She felt bad. (I did too!)
In any case, I'm glad the day is over, and I'm keeping my fingers crossed for clean margins and clean nodes.
Irish Dancing - I hope things went well for you today.
Take care everyone,
Ridley0 -
Hi CynthianTX -
Check out the main site at breastcancer.org for lumpectomy and wire localization. Site describes the procedure and then discuss with your BS so that you are informed and under stand each step of the procedures that will take place prior to surgery.
On day of surgery you will check in at your imaging center where the dr will perform the wire localization...it does not hurt its more a mental thing...compression mammo then similar to a stereotactic biopsy wire is used to flag the bad t so easier for bs to find that bad t and get it out if there...hopefully a non event for you. Wear yoga pants...you will be sitting in a chair surrounded with pillows...go to your ummm space:)
Breathe, you've got this brave lumpie
Promise after lx&snd you will feel so much better.
Go blow one bubbles wiggle your toes in the grass and laugh love!
(((Hugs)))
Cindy0
