Lumpectomy Lounge....let's talk!
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6doggies, I'm at the end of radiation. I did not have a mammogram or ultra-sound prior to radiation. However, I had chemo first and had a mammogram and ultra-sound prior to surgery. They did take x-rays that the RO uses for the radiation plan and they take x-rays every 5 treatments.
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6doggies --- answered part of this over on the radiation thread... No mammo or ultrasound since before surgery. Only scan during sim. BUT just about everyone examines my breast! I'm just used to it by now. I mean, even my cardiologist wanted to have a look! Geesh. So, yeah, the RO definitely checked. But very quickly. And he looks at me once a week during treatment, just to see if there's any redness or whatever going on. Asks about pain, etc. Nothing so far except dry skin that is helped by the aloe lotion they suggest.
He, also, sounded a little defensive when I asked questions. I was just curious, not questioning him... I asked what determined the length of treatment. He said it was a big complicated equation, and that was it. He's nice and friendly otherwise, so I guess he just thought it was impossible to explain... but he could explain SOME things a bit clearer, I'd think! Oh, well.
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Inkster, I also had a rather wide "scratch" right after my Lx. BS swore it was nothing she did. But SOMEONE did. It was tender like a floor burn - 1-1/2" long and nearly 1/4" wide. Right about where yours is. Of course, it healed. But it remains a mystery.
HUGS!
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20andScared, my heart goes out to you! You are so young to be facing this challenge that we oldsters have trouble coping with. But we are here for you and will try to answer any questions you may have. Please update your profile and make it public with all the information you have received so far. That is a big help for us when we respond to you.
The lumpectomy is major surgery but most of us do very well and find it isn't bad at all. I took one pain pill - in recovery - and then regular Tylenol at night only. I just didn't have any pain.
One thing I would recommend you do is make a list of every question you have for your oncologist. WRITE THEM DOWN! It is so easy to forget them when you are naked facing the doctor. I make lists in WordPerfect (I know, no one uses it but me!) and print it out before my visits. I leave room for the answers. I've been doing this for 45 years (started with my first pregnancy) and my doctor laughed each time I whipped out my list but he stopped and answered every question so have been doing it ever since.
If you are on FaceBook, search for breastcancer.org. There was a story today about a young woman of 23 who was looking for support for young women with breast cancer. Several good stories in the past couple days. Please take a look. Perhaps the articles are on this site but I came across them on FB.
Many hugs to you as you tackle this nasty disease. Sometimes the path is difficult but it is doable. Stay positive - that's a huge help.
HUGS!
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I had my lumpectomy yesterday morning around 10:15 and I was back home resting comfortably by 2:00. The pain level was not too bad and I was able to make it through the night by just taking 1 OxyContin every 4 hours. I have now switched to Extra Strength Tylenol because I don't like the way I feel on the OxyContin. No surprises during surgery and the preliminary reports showed good margins and no spreading to the lymph nodes so my BS said that I will need 6 weeks of radiation and tomoxifen for 5 years. Of course, everything depends on the the final pathology report sometime next week. The waiting was the worst part and I was an anxious mess. My BS had given me a prescription for Xanax which helped tremendously to get me through the waiting time. I am a 12-year survivor of Endometrial Cancer so I have been through the waiting, surgery, etc. before. My mother was a 50-year survivor of BC and died last August at the age of 91 from heart issues. I am also waiting for the results of a gene test to see whether I have Lynch Syndrome since I had my EC at the age of 46.
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Hi Maggie!
Sounds like you are doing great! Glad to hear no surprises on the initial pathology.
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Sounds very positive Maggie57!0
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Maggie57,
Hi, that waiting is nerve racking for sure! Hope you get your final pathology report soon but sounds positive. Good luck to you, keep us posted.
Jo
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Hi Maggie, Glad you are doing well after surgery. You have been through a lot. I hate those heavy drugs, too!
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Maggie57 -- Glad to hear the surgery went smoothly and initial findings were positive. Just try and rest and concentrate on recovering. I slept as much as I could so I wouldn't have that much time to wait around and worry before my post-op appt. 5 days after...
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Maggie . Don't expect to do much too soon. Take it easy. Even though you feel good it's normal to feel fatigued for a couple weeks.
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Hello, everybody! I'm going to read more of the board before asking any convoluted questions but just wanted to introduce myself...and now not sure what to say for a complete one! Lx#1 on June 16th, but found out last week that my margins weren't quite clear enough for the surgeon's liking....and given my DCIS location, that means #2's going to be rather less appearance-conserving, to put it circumspectly, although still breast-conserving. At least he seemed sympathetic/sorry about it!
I'm trying to be glad about the silver lining that at least the pathology report didn't result in a significant change to my diagnosis.
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I just had a lumpectomy Friday. I was given a nerve blocker prior to surgery and have been relatively comfortable until today. Last night I was feeling guilty for not planning to go to work today. This morning I woke up and I just feel bad. I'm achy, very sore, uncomfortable, fatigued and neuseus. Over the weekend I took the pain meds mostly to force myself to sleep. Today I can't even get myself to sleep. Is this a pretty usually experience? I'mnot trying to rush anything and want to rest as much as possible to heal. I just wasn't expecting to feel so bad on day 3.
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Ringelle, Sorry you're feeling so crummy today. Sometimes it all catches up with you after a few days. Continue to take it easy and don't hesitate to take the pain pills - that's why you have them! You should start to feel better soon. I had general anesthesia so can't comment if the nerve blocker has anything to do with how you feel now. Please rest, curl up with a good book and/or fur baby and relax - you're normal!
HUGS!!!
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Ugh! got oncotype Dx score today of 23 and in the dreaded middle zone. when you all were looking at your risk, did you just look at the % between the 2 bold lines or did you use the lighter lines on the graph?
Ringelle, Ditto to Peggy's advice and don't over do it.
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PatRN10, Crap! I think we all want the Oncotype score to be REALLY low or REALLY high so there's no gray area. Mine was 13 and for some reason my MO STILL thought I should have chemo though no one else did. I did not have chemo. I can't say for sure, but I think I probably would have done chemo if it had been 18 or 19 if my BS, RO and MO agreed.
So talk to all your docs and get a consensus. See what the board says about your treatment. Then decide what YOU think is your best course of treatment. Whatever you choose to do or not do, go with it wholeheartedly and never, ever look back or second guess yourself. That will drive you crazy in no time. We're here for you. Others will chime in with how they made their decisions with gray area scores.
HUGS!!!
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Hello,
PatRN10, I feel for you. I really sweated my Onco score and it looks like our situations are really similar. Mine came back as 15, so my MO didn't push, but I know he would have let me opt for chemo even with that low score had I wanted it. Most of the people I found online were a lot quicker to jump to chemo than I was feeling. I had decided if I was in the middle the docs were going to have to do their best to convince me, and I wasn't even sure how much I was gonna listen under a 25. I would have seen more than one doc for an opinion in that range. Good luck with the decision. Be sure you are comfortable with it. I wish the best for you.
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Queenmomcat, You stated that your margins weren't quite clear enough to your surgeon's liking. Does that mean that part of your margin wasn't clear or that the margins were clear, but not thick enough for your surgeon? I'm curious because one of my margins was only 1mm. My BS was hoping for 2mm, but was satisfied with clear margins of any size. This was seconded by the tumor board at my facility.
Pat, I looked at all of the information in the Oncotype DX report. I primarily based my decision on the % chemo would decrease my chance of reoccurrence.
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Thank You PoppyK but did you determine your % decrease from the 2 bold lines? (The bold solid and the broken lines). I am trying to determine the significance of the other lines that are lighter.
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PoppyK: thank you for asking! Because this is something I need to know too. We just checked the pathology report again and it said something along the lines of "lateral margins were .25mm but superior and inferior edges were involved" (translation from pathologistspeke: the sides had extremely narrow margins though acceptable in a pinch, but the top and bottom didn't have any margin at all..)
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Sorry to hear your score was in the intermediate range. Hopefully someone can answer your question about the lines. {Hug}0
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Patrn10....I had a 24 and no chemo. My BSO who is also the director of the breast center felt that the benefit of chemo was not worth the risk. I can't remember exactly but I think it was around 3% benefit. He felt that femara was the way to go and said reports would be coming out in the next few years to support that. I think his recommendation was based on several things. My age was 59, other than BC I'm in good health. I exercise and have a good weight and have a relatively healthy lifestyle. Of course if I wanted chemo he was willing to set up appt with MO to discuss. I declined, I felt good with his recommendation.
Best of luck with your decision.
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Thanks everyone,
Thank You Nash! Very interesting discussion! The way I look at it, by the report Tamoxifen alone only brings down my risk by 4%. I get another 4-5 (my eyes are old) with tamox + chemo. So with my ER only at 25%, I am kind of leaning with that extra %. If my ER were higher I think I would feel more confident with just hormonal therapy. I really appreciate the feedback.
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PatRN10, I strongly recommend that you make no decision until you have talked with all your oncologists and get their take on what THEY think you should do. Then make your decision.
My ER/PR numbers were expressed in digits, not percentages like everyone else's. Peculiar. But still highly positive. I can see why you are considering chemo. There are so many variables to take into consideration. Have you checked any of the chemo boards to see what others have done in a similar situation and whether they would do it again? Just a thought. Might give you more insight.
HUGS!!!
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Chemo decreased my chance of reoccurrence down by 3%, and I did chemo. I was 49 and in otherwise good health.
Queen, So sorry you didn't get clean margins. ;-(
Pat, I had to pull out my Oncotype DX results to look at the lines you are referring to. The bold line is the risk with Tamoxifen alone. The dotted line is the risk with Tamox plus Chemo. The faint lines apply to the Tamoxifen line, while the faint dotted lines reference the Tamox/Chemo line. These faint line are the Confidence Interval(CI).
I don't know how many people are familiar with statistical analysis, so I'll briefly explain what this means. For the Oncotype DX, it means that 95% of the population they studied would have results that would fall within those faint lines. For my results, it means that Tamox/Chemo had risk of reoccurrence that ranged from 6-17%. Tamox alone ranged from 4-15%.
The bold lines are what should be used for your risk analysis. It's not exactly in the middle of the range of results because it is a mean result.
I hope this helped and didn't add to the confusion.
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Thanks Poppy and Peggy! Yes I did check the chemo boards and a few others have gone on without regrets. We'll see what docs say.
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Just to toss it out: My ER/PR scores are on on the RT-PCR scale (whatever that is). My ER score was 10.7 Positive; PR score was 8.4 positive and HER2 was 8.7 negative. Anyone else have scores done this way?
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Peggy, I have results both ways. My Oncotype DX used the RT-PCR with results of 9.4 ER positive, 8.8 PR positive and 9.5 HER2 negative. The path report from my lx states "breast carcinoma receptor studies" were done. ER 90% positive, PR 90% positive and HER2 negative (score 1+).
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Poppy, unless my ER & PR are 100% positive I don't see anything in my biopsy path report with a percentage. Can they be 100%?
My Lx path report has Allred scores of ER 8 and PR 7 and HER2 ratio of 1.21 (FISH).
Interesting how many varieties of ways there are to express the results.
HUGS!
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Hi
Peggy, My ER PR scores are 100 percent. I just found that out in April when I finally asked my ONC- I had Alred scores like you did and mine were listed as ER 8/8 and PR 8/8. So my MO said Tamoxifen or AI should be of great benefit to me. I had asked if I could go off Tamoxifen since I had my ovaries out. He said it was up to me but then showed me my results and highly suggested I stay on it. UFFF- things are so confusing.
Waiting to see an ENT.I see one July 7th , took about 6 weeks to get into to see one. I have been dizzy at night and at yoga and some headaches so GP thinks because of my history, I may need a brain scan. He said he wanted to send me to the ENT first, and see what he had to say. To say I am freaked is a bit of an understatement, I am glad my GP tells me what he thinks but at the same time its so scarey!!!
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