CALLING ALL STAGE I SISTERS
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I too had the second incision about 3 wks after the first lump. They also did the sentinel node removal. The surgery lasted about an hour. I wish they had done a frozen culture at that time so they knew if they need to take more, but they didn't. Rads started about a month later since I was having trouble with a seroma (still do) and they had to aspirate several times. In retrospect they should have used drains...
Nwest, did they know when they did the second surgery that it was going to be a BMX?
Welcome to all the new stage 1'ers... Great group of ladies here!
The MRI went Ok yesterday. I'm sore on my sternum because of laying there for 45 min. I did take my own earplugs to help with the machine noise and they also had to put the earphones on me... but I still heard the whooshing noise. I was really tired afterwards and need a pick-me-up... so I stopped at the TCBY and got some double chocolate yogurt. They said to drink plenty of water to get the dye out of the system.... I did that later - I just needed the chocolate first!
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Hi, all,
I guess it's time for a belated formal introduction. I joined this discussion board back in 2009 when I had a biopsy that was B9. I think that I just somehow knew that someday I'd not be so lucky. I've had a few scares that were B9 over the years, but back in Dec., while shaving my underarms, I discovered what I was hoping not to discover ever--a hard, pea-sized mass in my right axilla. My immediate thought was that it was an inflamed lymph node, probably signalling another tumor elsewhere. After a clear mammogram and ultrasound, and a radiologist's report that said it appeared to be a B9 inflamed lymph node, I saw a surgeon, who thought it was a harmless sebaceous cyst and told me the proverbial "wait and see." I became concerned because it seemed to be increasing in size. Even after surgery to excise it on 4/8/2011, he said he'd be "shocked" if it were cancer. It was.
So I'm now with a team of doctors at a multidisciplinary breast clinic at a teaching university. Because of the relatively unusual location of my tumor, and the possibility that the excised mass was a metastasis of a tumor elsewhere, I had an MRI, a CT scan, and a bone scan, all clear, and so my team has determined that the axillary tumor was my primary.
I'm still recovering from a re-excision/SNB (0/3 nodes) on 5/17//2011; the re-excision showed residual cancer but clean margins. Because it was the second surgery in two months to my axilla, and because my tumor was in the same vicinity as my SNs, I've probably had more pain and discomfort than I think most people must have with re-excision and SNB.
I'm now in limbo awaiting the delayed results of my Oncotype test. I'm pretty sure I'm stage one, as the original tumor excision was .8 cm and I have clear nodes and no metastases found. Intermediate grade, mixed tumor, and highly ER/PR+. So I'm sure you'll be hearing from me from time to time. I've been reading all of your posts for a long time and want to thank everyone for providing invaluable support and information.
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Maybe, sorry to hear about your experience. Welcome officially to the "girls w/stage 1". I hope your reports come in asap.
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Thanks, samsue. I was supposed to have the results at my post-op appointment on 6/2/2011, but the surgeon sent in the tissue from my re-excision, and there wasn't enough cancer in that tissue for Oncotype to run the test, they informed her the day before my appointment. So my surgeon has had to order the tissue of the original excision from the first hospital. I'll have two more weeks of limbo before learning my recommended treatment.
ETA: my surgeon told me that about 20% of lumpectomies obtain unclear margins and thus require re-excision.
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maybe so sorry for your issue finally becoming cancer. I will pray for a low oncotype score for you. Welcome officiallly and I think you already know this is agreat place to be. Please keep us posted.
Samsue-hoping for a clear MRI results for you.
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Maybe - Welcome! Sorry to have to meet you like this. Keeping fingers crossed for a low oncotype score. Please keep us posted.
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Samsue- ice cream has water in it too right? good idea with the double earplugs....I counted....and counted and counted when I had my MRI done pre-radiation..their earplugs slipped on my head and sinc ehtey had said not to move, I was afraid to say anything (since the first two times they I said something they moved them on my head and then the earphones moved again!)..so I counted deep breathes and got to 240something before the machine was turned off...thought I would scream at one point...may have to bring in a cd in Sepember! Keep us posted on your results!
Maybe- welcome....sorry you have to join us but will ssend up some thoughts re. a low oncotype
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samsue- no I just went to have a re-incision for clear margins and they found ILC at that time, so my BS told me the best thing for me was a MX so I decided to do a BMX so I didn't have to worry about the good breast . ILC is pretty sneaky it never showed up on any of my test.
Nancy
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hi all... good to see everyone. and welcome to the new ladies..... i was told to stay away from my gKids while doing chemop; they're young, and always have colds. esp. a/c ; and taxotere lowers your immune system, to the point the neulasta shot is to raise your white count...
having said that; there's ways to handle it... antibiotic wipes, etc.. if the support is more imp; work around it!!! i wish you well in all your tx.. ....3jays
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Welcome to the newest sisters ~ so sorry you have to join us, but I am so happy you have found us. I would be lost without the support & love of this wonderful group of ladies.
lindaku ~
Allenan ~
Loislee ~ Your avatar is lovely, the roses & picture.
Maybe484 ~ So sorry you had to return & that you now have to wait additional time for your Oncotype results. It's hard enough to wait the first time.
I hope you all receive a low Oncotype Score & then you can move on with your tx. Mine was 14 & I did not have to have chemo.
Samsue ~ Waiting with you & keeping good thoughts for a clear MRI.
nwest ~ Your avatar is adorable. A sleeping child is so peaceful & those moments are so special.
(((3jays)))
♥ to Sheila ♥
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Valjean................got my Oncotype score back........forgot to ask all this time.........MO told me the other day it was 8....................she was thrilled..............still have to do Femara...........Glad yours was low too...............however I do have Lymphedema and I'm seeing a Board Certified specialist, and she is great.............she said it is a mild case, caught early by me...........I kept asking and they were blaming the swelling on surgery, finally I said "enough I want this checked out"........it's good I kept pushing them.....my RO told me who to go to.......I even challanged the insurance company till they ok'd the specialist I insisted I wanted to go to.........hope your doing well.............I am almost done Rads... they surprised me by adding 3 more boosts, but I'm ok with that......RO said "insurance for me and peace of mind for her.
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Need help from you all that have radiation in your treatment plan .. my best friend was diagnosed 3 weeks ahead of me, and her treatment was a lumpectomy and now radiation - she is trying to figure out if she should set up her daily appointments in the morning to 'get it over with' or in the late afternoon so she can go home if it is too much... thoughts?0
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vhshea-I had mine early afternoon. I went to work then traveled 50 minutes to rads, had rads then home 50 minutes. Then I laid down and took a nap so I would have the energy to exercise , cook supper and all the other things to do at night. Lots of people do it in the morning on their way to work. I guess you just have to figure out what works best for you. I exercise alot and knew that I would not have the energy if I did not take a nap.
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Hello everyone, I'm new to all of this so i'm still in shock.
I'm waiting right now for my Oncotype results. So tired of waiting for test results. MY MO was really pushing chemo and I was kind of in a state of shock since they consistently had told me if I had no lymph node and HER2 - i wouldn't have to. She keeps saying it because I'm so young, I'm 43, I don't feel very young today. I guess if I had a better understanding of the statistics of recurrence that reflected my pathology reports ratherthan I'm young I'd feel better about making a decision.
how do you decide between chemo or no chemo?
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Dexxy welcome but sorry we had to meet this way. This is a great place for support and to ask questions. The onco type score will help you in making a decision. Also if you are not sure get a second opinion. I was diag last sept and am 48. so yes we are considered young for bc. I scored a 23 which was in the middle of Interm and I did not do chemo. I feel good about the decision. My KI67 was low. You may want to look at your path report and see what it was as MO's like to take that into consideration as well. chemo would have only benefited me by 3-4% so my MO did not really feel it was worth the SE's I would have from it. He left the decision up to me and I decided not to per his recommendation. But always seek 2nd opinions if you are not satisfied with an answer or if your gut is telling you too. It can never hurt. Good Luck with your decision.
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Hey, Ladies - just checking in to say "hi". I have nothing to report. I go in for my MR biopsy next monday, and when that comes back b9, I start chemo probably the following week. I bought my wigs this past weekend, though! Glad to hear that your Oncotype score was so low, Ducky. Dexxy - hang in there, and don't make any decisions until you are ready to make them, you do have some time to think things through. Never, ever act on fear or let anyone push you into a course of action you do not feel comfortable with. Hang in there!!
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Did my rads in the morning...........have had a couple in the afternoon (needed to), and found things were somewhat backed up as the day goes on......never once waited in the morning....I was in and out and wanted to get them while the tech's were alert....they began at 7:30, so I chose 9......worked out perfect and I'm om my last 6 boosts.
Can't advise anyone on Chemo, Onc score was 8 so not necessary, didn't need it, but research, asking questions, and faith and trust in my Dr.s and family helped me to make good choices. good luck to you all
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Dexxy: I went through an incredibly agonizing chemo decision myself. I am triple negative, so we don't have hormaonal therapy to fall back on, so chemo is usually given in most triple negative cases. I am a rare case. My 3 mm. tumor was found in the middle of a large area of DCIS, pretty much by accident. It is rare to find a trip. neg. tumor so small, so my first onco sent me over to out cancer institute because she really was not sure about chemo. When I arrived there, they said no chemo (it wouldn't be considered until 6 mm. and then only 'considered' not 'suggested'). They numbers they gave me were 1-2 % chance for metastasis, so I felt comfortable not going through with it. It is very important that you get the actual numbers from your oncologist because only you can make the decision and know how much risk you are willing to take. Chemo is risky in itself. Get as many opinions as you can so that you feel comfortable with your decsion. I went to three different surgeons and 3 oncos myself. There is also a program for patients online called Cancer Math which I found to be very accurate and agreed with the onco's numbers. Take care and research and let us know what you decide. The best of luck to you!
Susan
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vhshea -I did my rads in the afternoon - the last in the day that I could. That way I could go straight home and not go back to work. Like Sherry - I would take a short nap so I had enough energy to cook dinner and do whatever else I needed to do in the evenings
dexxy - Welcome - sorry we have to meet like this. You have found a wonderful bunch of very caring and supportive ladies. Your oncotype score will most likely be the deciding factor as to whether or not you have chemo. You stats are very similar to mine and I did not have chemo. In fact my MO did not feel the need to do an oncotype test. He said he did not need to do one based on the information in by biopsy path report. Be sure you have all the information available to you before making a decision - don't let anyone push you into doing something you don't want to do. It is your body - you have total control over what is and is not done to it. Please let us know what you decide - Very best of luck to you.
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jo1955: I have the same diagnosis as you. My Onc did not suggest chemo, only rads and Arimidex. I assume by your name (1955) you are 11 yrs younger than me. I guess it depends on what the pathology report shows. My onco numbers were not available because after the biopsy etc there was not enough to check. Have a good evening sisters.
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dexxy: Hang in there. Many of us have been in the place you're in right now. Be prepared for your Oncotype DX to fall in the "intermediate" range (I hope yours is clearly in that low range, however!!!). My cancers were small and found early and my BS kept predicting that my Oncotype would be very low, but mine was right on the low cusp of the intermediate range. I am choosing Arimidex with no chemo and my oncologist not only agrees, that was her recommendation.
My oncologist uses Adjuvent! Online, another statistical decision-making tool. However, it does not look at your actual tumor cells. It compares your basic health info and path report to a large database. So, ask your oncologist to run you through as many tools as possible and hopefully a clear answer will become obvious.
It can be a gut-wrenching decision. Hang in there!!!
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I tried to go to Adjuvant online but only a health professional can access it.
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Hi Ladies,Thank you all for your support. My re-excision is all set for Wednesday.
I do have some questions. My breast where I had the lumpectomy now feels so hard at the site. I know its probably edema and scar tissue but it feels so big and hard. Much bigger than the lump that they took out. Is this the norm?
Also, my path report did not say anything much, except for the size, nodes taken, nodes negative, tumor margins, grade, no lymphovascular invasion noted, and Her2-neu.
The area of concern for my BS is the Left inferior margin. It reads:
DCIS, solid and cribiform types with intermediate nuclear grade. The DCIS is present in two of five slides and is very close (less than 0.5mm) from the inked surgical margin. Is there a standard for the margins?
I feel like my path report is minimal or maybe I am just being overly anxious. I guess the Oncotype DX will give a more comprehensive picture?
Hope you can shed some light on this before I go in on Wednesday. Thanks Everyone.
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Beetlebum - I am 56 years old. I had rads and tried Armidex & Femara - ended up taking Tamoxifen. The AIs and my stomach do not get along.
Allenan - What you are experiencing is a seroma which is fluid build up in the lump cavity. It is normal and your surgeon can drain if off. After my lump, my breast was HUGE. I did not understand why it was that way. Also, you may be feeling the scar tissue beginnig to form. Let your surgeon know your concerns before you go in for surgery. Best of luck to you.
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Just got my mammo results - B9 - BIRADS Score 2. I am so doing the happy dance. What a relief. So glad that is over.
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Beetlebum - we all pretend we are doctors on adjuvent.
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Yay for Jo!!!!
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Gotcha Raincitygirl
. Thanks. I also ride with the top down every day I can. Love that blowing hair feeling!!! lol0 -
(((JO)))
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Good luck Dr. Beetlebum
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