Lumpectomy Lounge....let's talk!
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That would be awesome it they all had that.
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Vickie, in theory my PCP has all my test results online. In fact, it takes a year to get them there. Rather wasted. I don't think any of my oncologists have stuff online. That would be very nice.
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Had my stitches removed on Wednesday, and I think it's more painful now. I didn't have drains and my incision area's are leaking.
The surgeon says it's normal, and to use pads to absorb the leaking.
Area's feel like they are healing because it's itchy. Other area's feel like they are burning, I thing dh said it looked like a little infection, and I can smell it. I applied neosporin before I bandaged it last night.
I still tire easily, but I'll be back to work on Monday
The surgeons report was good I guess. The tumour was larger than the 3.7 cm originally thought, more like 5.8 cm's. He was aggressive with the removal and got large clean margins.
The first lymph node tested positive and he removed it. The 2nd node tested neg but it looked odd to him so he removed it anyway. It came back from pathology as cancerous. So he thinks I may be going back in to have 1-2 more nodes removed.
My next step is chemo, he thinks. I am now being referred to Oncology and it takes 3 weeks or so to see them. I had thought radiation was next, but because of the size etc... he figures they'll want to do chemo next.
I am stage 3, but that's all I know.
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again get hard copies of your pathology report, and any labs and test.
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Lori, sorry you have to go back for more lymph node removals
Glad he got clean margins.You might want to update your profile with all the info about your surgery, stages etc. And I second SailingWind, get hard copies of every report they do on you!
Sorry you will likely have to do chemo. At least there's something to kill those nasty cells!
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PontiacPeg
My MO has it on line and I can see it within a day or two. My PCP doesn't have it on line, yet./
He was telling me, when I was in for a problem with my knee last week, that it looks like all physicians will have to adapt to that system. Big expense for them to start doing it.
Vickie
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Ok I have my path report and oncotype report from BS. Path report says
Residual IDC size 1.2 cm Architectural score 3 of 3 Nuclear Score 2 of 3 Mitotic Score 1 of 3 Total Score 6 of 9 Grade 2 Minor component of Ductal Carcinoma In Situ Amount 5% Low grade cribriform type Micro-calcifications assoc with DCIS and columnar change No evidence of angiolymphatic invasion Carcinoma involves the superior margin of excision. TNM: T1cpN0(i) is (dont know what T1cpN0(i) IS is)
Not sure what it all means Im still trying to figure it out but I think its saying I have IDC stage 1 grade 2 with no lymph node involvement no mets ( this is what BS told me) and possibly DCIS?
Oncotype score is 18 looks like its borderline which he told me. Also looks like my chance of reoccurrence if Im reading this right is the same with both Tam and Tam+Chemo which is 27% in 5 year 10 yr with TAM alone was 11% ER + = 11.2 and PR+ = 7.9 HER2 = 9.2
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Vickie, my PCP does have some of the stuff online but they just don't do a good job of updating unless I email and complain which really defeats the purpose. All doctors are required to have electronic records if they want federal reimbursement (e.g. Medicare) - sometime in the next few years.
Finally learned why an oncotype test was done. I met the following criteria:
- Lesion larger than 5mm
- ER positive
- Lymph nodes cancer free
My BS will give me the results next week. She still says I shouldn't need chemo and I believe her.
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Nancy, nice that you were able to get the reports. Of course, I'd discuss all your very valid concerns with your MO next week, but it does seem that might do well with just radiation and no chemo. That is encouraging.
The website here at breastcancer.org says (for your 18 score):
- Recurrence Score between 18 and 31: The cancer or DCIS has an intermediate risk of recurrence. It’s unclear whether the benefits of chemotherapy for early-stage breast cancer or radiation therapy for DCIS outweigh the risks of side effects.
That makes it a toss up, I'd guess. Boo hiss. Be nice to have a clear cut answer wouldn't it?
0 - Recurrence Score between 18 and 31: The cancer or DCIS has an intermediate risk of recurrence. It’s unclear whether the benefits of chemotherapy for early-stage breast cancer or radiation therapy for DCIS outweigh the risks of side effects.
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read up on oncotype score on breast cancer site. 1 to 18 is low risk. 18 to 30 medium. 30 up high but read up on it.
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Hi Lumpies!
Ndgrrl - Congrats on 1 yr ! Yippee, so good to be able to see the year on the rear view mirror
hope you did something special and gave yourself a treat! Well done!Lori - yikes...sorry about the drainage...keep an eye on it and check in with your BS before late Friday. Alway better to know before a weekend. Sending calm healing thoughts. Yippee on path report clear margins...we will be in your pocket in chemoland...darn this c
kudos for hauling yourself into work...pace yourself...eat well and hydrate! Cut yourself some slack!Peggy - sounds like you will be off to play laser tag warrior! Arrange care for hubby...no hauling hiding and out of the car for a 10 mi. Rad trip each day...ask for help!
Nancy - hummm, boarder line oncotype....you will know which path to take...fingers&toes crossed for the best. Check out LookGoodFeelBetter.and other services at your BC center...{{{squeeze}}}
AZ - yes, always ask for copies of all your tests...keep a good file.
Had too much fun tubing yesterday...love the chutes! For the first time, really enjoyed summer in bathing suit and got a light tan...felt so good
)). New pup will be able to do lake time in just a few more weeks...I hope he likes kayaking!(((Hugs)))
Cindy
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Cindy, things just improved for hubby. He had been really really bad for about 10 days and Tuesday night some switch flipped and he was suddenly able to do lots more for himself. Parkinson's is such a shitty disease, you never know when you'll have problems. And we think it was a Parkinson's problem. Whatever, so relieved that he's doing better. Took a load off my shoulders. Had a bone density scan today and the questionnaire asked if I did weigh bearing exercises. Well, no but what about tossing around 200 lb hubby many many times a day? Does that count?
What kind of puppy did you get? glad you had fun tubing. My youngest son and wife love it.
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Nancy, besides my IDC, I also had a DCIS. I asked my MO about it and he said it was taken out, gone, don't worry about it.
Then I asked my BS if she could "see" the cancer cells when she was doing my surgery. She said she doesn't want to see them, only healthy tissue to make sure she gets good margins. If she can "see" the cancer then the margins are clear and she's into the lesion and that's not particularly good. It made sense, I just hadn't thought about it (obviously).
I can't believe how lucky I am with my three oncologists. They each have a very different personality but it works for me. I trust them. They LISTEN. And they don't laugh at me (but they do with me). I know everyone isn't so lucky. Each was recommended to my by another doctor - no friends or family knew them.
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Vickie1960...I also have Mychart...all reports are on computer ....
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Its hard to make sense of all of this. I figure if my BS was concerned about something on the report he would have told me. He is pretty up front and doesnt sugar coat. In fact he just comes in starts talking to you so your mind is off what he is going to do and yanks your damn stitches out. LOL. No he is really nice dont get me wrong. In fact he brought me a really nice plant with pink flowers on it the day of my surgery.
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HI.I also had an onco score of 18 which is borderline low and medium- its confusing- I have had two oncologist opinions and they both said that the benefits of chemo were not worth the risks. They said if I was about a 21 or 22 they would consider the chemo more. So I was satisfied after two doctors said the same thing.
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Hi ladies! Quick question- I had a lumpectomy on August 6 and just noticed tonight that the area now feels very hard underneath. Is this normal? I've been having intermittent throbbing and wondering if I'm doing too much lifting or something?
I'm going to be going back to surgery for another lumpectomy to try for clear margins and SND (since they found ILC) in a couple weeks.
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Lorrilynne, I had my lumpie 4-1/2 weeks ago and I still have hardness - more like several lumps. I would guess you are still swollen. You can check with your BS, but I think what you are experiencing is very normal. Sorry you have to go back for more surgery
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Nancy, that was sweet of your BS. At least his style works for you!
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Lorrilynne: the sore hard lumps is very normal, surprised me how long they hung around, if you're throbbing you might want to cut back some on the activity with that arm.
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ndgrll I too have to go back for more surgery and I feel your pain. We will get through this together. I also have hardness where my lumpy is too and still have shooting pains there and more so where my SNB is. Im with you sister hang in there.
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This is the plant my BS gave me on the day of my lumpectomy July 30. Im not sure what it is but its pretty, Sorry its dark its raining again here in Westfield.
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Hi everyone! I also stress to get cooies of your reports. Ask for them when you arrive and get them before you leave. They are your records! I've reviewed mine many times as I kept having more questions as time went on.
Well rad is going along and have 24 of 33 done. I start boots on 8/27 so will be in the down hill count! My rad team and RO are superb! Vering caring and always full of info when I have questions. I got to see the photos/xrays and digital plan and boost mapping plan yesterday with RO. Very detailed and interesting (to me). I may ask for a printout if it too!
My Lx and SNB scars are really good and flat. I used Vitamin E oil and pure aloe gel and massage 3x day (after incisions are closed). It will help lots with the continued internal healing. I switched to Miaderm lotion right before rad to hydrate skin in prep for rad and now during. Yesterday I added Aquafor ointment as I have that dreaded rad burn redness now :-( I used ibuprofen last night to help w low/mod pain so I could get a good nights sleep as the last 2 nights were't so good. Worked pretty well and slept pretty good.
lorilynne, try the oil and aloe gel. It worked well for me.
Peggy, sounds like things are better and glad DH is better too. Gear up mentally for rad. You'll do great!
ndgirl, I have a list of questions I'd be happy to share. I'll do a separate post this weekend if that works. I have to use my laptop as some reason I have a hard time cooying/paste into this site on my tablet.
Well TGIF everyone!
Mari
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Mari, Sounds like you are doing fantastic! That's wonderful. Obviously you did the right things for your scars.
I will likely start my rads on the 2nd, the same as you 28 & 5. I don't know that I'd have thought to see the photos/x-rays etc but now I definitely will ask. Printouts would be neat to add to my American Cancer Society file. The therapist said he'd be glad to take photos for me. Not that I'd necessarily share but I do want a record.
Thanks for the encouragement on the rads. It has never bothered me that I'm to have them. Only issue has been dragging DH along every morning. But only have about 2 weeks when that will happen since he is having a likely cancerous tumor on his kidney removed and will probably be in the hospital and then rehab for about 3 weeks.
Now waiting for the oncotype results. Sigh.
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High five, ndgirl! I also just had my 1 year anniversary of lumpectomy a couple weeks ago, so I guess I consider myself 1 year cancer free! Wahoo! DH and DD bought me a large decorated cupcake to celebrate.
One year later and I am feeling pretty good. Still a bit of numbness and tenderness in breast and armpit area, but not too bad. I have lost 18 lbs, eating healthier, etc. I was walking a lot, but had to cut back due to hip pain. (Right now I am doing some PT for shoulder, back, and hip.)
What a difference a year makes! There seems to be something about passing that psychological marker of 1 year that has really helped me to relax more and feel better about the whole BC ordeal. I finally feel like I can stop thinking about BC all the time, and focus on other things.
Happy weekend to all my fellow lumpies. Shout outs to all my one year buddies!
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Hi I am new to this site...I had a partial mastectomy on my left breast 10 days ago...I hear fluid in my breast (weird right) but I do and when I squeezed the nipple bloody discharge came out...is that normal?
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So the drainage has stopped. I noticed the lymph incision is the most sore, looks a bit pink too. I did a warm compress and neosporin which did help a bit.
It's been since Aug 11th, should I still have the sloshing? I thought I would have absorbed it by now...
I'm down to a pain pill in the a/m and before bed and I do need them. I still ache and the incisions burn, and pinch a bit.
Working on Monday will be a bit of a challenge I think....:(
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HI ladies.. hope you all had a calming /fun /happy weekend
I am having my pre-op on thurs. They said they were sending me a "surgery packet" last Monday.. which never showed up ( ill show up there tomorrow and ask for it)
What should I ask about? What are questions do you wish you would have asked? any input is useful
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Panthrah, you might want to ask how much you can lift and how long you'll have restrictions. Please make sure you find a good larger sport bra (you'll be swollen) or a Genie bra (that's what I wore). I'm still finding it nicer to go braless since nothing rides up on the bad girl incision (that's annoying, not really hurting - I never hurt much). You'll want to wear something that buttons in front for awhile too, most likely. Sometimes it is uncomfortable to raise your arm if you have a SNB.
You'll be fine!
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Hi ladies - Hope you all had a nice weekend! As I'm facing my second lumpectomy I've been thinking a lot about whether I should be discussing doing mastectomies and just being done with this!?
It seems I read somewhere that if I have radiation now that should I have a recurrence later that doing reconstruction then could be difficult or that you can have problems. Or something to that effect? Is this true or are there things I should be considering? I would sure appreciate your input!
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