Lumpectomy Lounge....let's talk!
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ChiSandy and Runor, you two should go on the road together! I don't think it is just because work was rough today (sad outcome for a patient), but I have been laughing OUT LOUD for post after post! My kids were asking if I was OK? Honestly, I hate that you have such a tough time finding a good bra and have had to have such barriers on your frontsides, but you certainly know how to make the most out of it for the rest of us! I'm still wiping my eyes!
Tapper, way to go on getting through your first post treatment mammogram and U/S. I'm glad it wasn't too bad and I will pray for a good report for you.
Hugs to all here...
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Wondering if posters on this thread are aware of up and coming proposed changes to BC.Org site. Here's a link if you want to inform yourself.
Are You Aware of/Concerned about proposed BCO thread changes?
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Kati and SCRV, I understand completely how hard this treatment planning phase is. Of course we all want to do the utmost to prevent a recurrence, but sometimes chemo brings more risks than benefits. That was the case for me, so I did lumpectomy + radiation + Tamoxifen. I'm comforted by all I have read, and by the concurrence of great doctors affiliated with Georgetown and Johns Hopkins. Sounds like you are on the right track but we are always here to discuss pros and cons if you need us.
And Runor and ChiSandi - when are you appearing at the stand-up comedy club near me? I would LOVE to hear your discussion live and in person. It's so good to laugh at this crap!
Trinitymom and Tappermom, wishing you all the best.
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I had a meeting with a surgeon on Tuesday. She recommended a lumpectomy with radiation and possible chemo. I felt good about that.
Now thinking more about it, I'm questioning that decision.
If they suggest lumpectomy and I choose mastectomy, would that be covered? Would a bilateral one be covered?
What if there are underlying tumors that they are not seeing? I've seen a ton of stories where someone decided on a mx and then they found so much more.
What happens if I have a lumpectomy and then constantly worry about reoccurrence. Can I choose mx then and is it covered?
How will I look cosmeticly? What if I need plastics then, is it covered?
I'm overwhelmed
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You are entitled to asking more questions and weighing all of your options. It can sometimes take time to get answers from insurance, but it's usually the job of the doctor's staff to find this out for you.
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Katie - the trouble with first being diagnosed is trying to decide what is best for you. My bs suggested lumpectomy right off the bat. It seems they do this more today than what they did 40 years ago, because it has been researched that local recurrence is no worse than if one chooses MX. There are recurrence in breast muscle tissue with a MX, it’s rare, but it can happen. MX usually avoids radiation, and if you had a very advanced cancer, then it’s probably the best thing to do. However - it’s your choice, not the doctor’s. If they thought you needed a MX then they would tell you. Your MRI will note any other areas at question. The radiation will zap any pre cancerous spots as well as hormone therapy. So local recurrence should be under control with lumpectomy. The scare for all stage cancers is the recurrence of cancer cells causing bone, lung, liver or brain cancers down the road. Whether you need chemo, will be known after surgery with the Oncotype DX test, or a Mammoprint test depending what your doctor uses. There’s a lot of what ifs and scares to knowing what’s best to do. You can go online and find photos of many women who have had lumpectomies, breast reductions, as well as those women who have had MX and have had reconstructive methods done. Don’t worry- we all have been there
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Slight correction: breast cancer that has metastasized to bone, liver, lung or brain is still breast cancer--the histology and behavior of breast cancer cells is very different from bone cancer, liver cancer, lung cancer or brain cancer cells. And the drug treatment, especially if the breast cancer is/was ER+, is in part the same--but with the addition of with stronger agents (Ibrance, Faslodex, etc.)combined with anti-hormonals (usually letrozole) in higher doses than during the original adjuvant treatment.
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Can I ask you thereisnodespair if you had a onoctype test? You and I seem to have similar diagnoses. I have had a lumpectomy and now second guessing because of the lymph node involvement and the bs not taking more than one. They are saying the same .. no chemo and radiation and hormones.. not that I want chemo or an mx but now wondering if putting that trust into one test is good. My score was 7 which I know is low.. but still with everything else...
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I had my first mammogram and ultrasound post-surgery and radiation treatments last Thursday. I got both a letter and a phone call saying follow-up images are necessary. Yippee! I’m going in the morning and we’ll see what they say.
MJ
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Tappermom, that sucks. Hopefully they're just being overly cautious and want to rule stuff out.
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Tappermom, I know that feeling in the gut .. oh no, not this again.
I found a lump in good boob in November, had mamm and ultrasound in December. After doing the mamm they told me to go back to the waiting area and wait for my ultrasound. Instead the tech came out and asked me to come back in and took a whole set of mamms again. All the while I'm thinking, this does not look good. You try not to panic, but you do. At least I did.
Please keep us posted and let's hope it's all in the name of being thorough. Hugs.
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So, runor, I assume all was well? They are looking at my good boob, too. My tissue is so dense they have a hard time telling what they’re seeing. You’d think at my age (almost 71) and, after a hysterectomy, things would have thinned out but apparently not!
Thanks for your good wishes. You, too, moth!
MJ
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Tappermom, things are .. unclear. The new lump in the good boob turned out to be a cyst, no worries. However ... the bad boob may have post surgical scarring, but 'the area of architectural distortion persists and carcinoma cannot be ruled out.' In other words, gee, it looks like that bad junk that was in there last year is still there, after lumpectomy and radiation so there is the chance there is still cancer in that breast.
I freaked out.
Called rad onc who had second radiologist look at the mamm and say. "yeah, this is what all boobs look like after surgery, don't worry, it's nothing"
Having two opinions that basically oppose each other did NOT provide me much comfort. Rad onc said to have another mamm in 4 months and if there are any changes, we will take action. So it's pins and needles until then. Was the first radiologist being overly cautious? Was the 2nd being too dismissive? I have no idea. I just want it to all go away. (but I am doing fairly well, I think, I think I am in denial...no, no, I can't have more cancer. But I know better than to believe my own denial. I never thought it would happen to me and boom, here I am!)
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runor--A seroma can cause architectural distortion--fluid rushes into the tumor cavity so that it's roughly the same size & shape as the tissue (including the tumor) that was removed during the lumpectomy. This occurs after many types of excisional surgeries because nature abhors a vacuum (and so do my cats).
Compare the two rad oncs, not just their opinions. Who was your original one? And who is more experienced? One who's seen years and years of "boobs...after surgery" knows what he's talking about.
scrv--if there is any test in which it is safe to put one's trust, it's OncotypeDX--especially with a score of only 7. Chemo would not work against a tumor scoring that low. And if you were to get a recurrence, it would probably have happened even if you'd had chemo. But MX is a decision only you can make. Many women choose it with even tiny, low-scoring tumors (even DCIS) for "peace of mind." IMHO, there's no such thing once you've been diagnosed. Keep this in mind, too: oncologists &/or their centers have to buy chemo drugs in advance and recoup those costs from patients. And surgeons get higher fees for MX than for LX. If your MO and surgeon are advocating that you elect treatments that are against their own financial interests, that ought to tell you something.
Know that the survival stats for LX+rads and MX are identical, and the ipsilateral (same-breast) recurrence risk for each is still in the very low single digits--still a statistically insignificant difference. MX is a longer surgery, carries a higher risk of complications, has no guarantee that rads won't be necessary, has a longer recovery period, requires drains and often needs additional surgery down the line (removing the "dog ears" or "bat wings" you never noticed when there was a breast there) whether or not you opt to reconstruct. (And that's a whole 'nother can of worms).
As the old blues song goes, "don't go looking for trouble--or trouble will find you."
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Tappermom, keep us posted on your followup imaging results, and my prayers will be with you. And you, too, runor! Conflicting readings are the worst kind, but followup in 4 months seems reasonable and I hope you can enjoy life until then.
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My wife had a Birap of 4 and a biopsy was performed. The Dr called us today and stated the following;
1) The tissue examined did not show any cancer cells
2) I am scheduling your wife an appointment with a Surgeon to remove it and further test it in case we missed some cancer cells.
So I am confused? Is it benign or not? I feel this is good news but why the procedure unless they still feel its cancer?
We are new at this and obviously very worried. I am being told that this is not bad or the worst news but trying to understand.
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Alex- when my area of concern was first seen, the Dr who reviewed my ultrasound as I lay there said: even if this is not cancer I want you to see a surgeon and get this out. My biopsy showed carcinoma. So you wife's wasn't showing carcinoma, which is good. Getting it out may be best.
Runor & Tappermom38- thoughts & prayers are with you both. HUGS!
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Runor, that's crazy! We all love the wait and see game. Thinking good thoughts for you.
MJ
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Alex, what was your wife diagnosed with on her mammogram?
Some types of growths give better results with needle biopsies and some give less than clear answers.
If she had a biopsy and they said it was clear but want a surgical biopsy anyway, she might have a growth that falls into the 'unclear results with needle biopsy' category.
I knew that my diagnosis, radial scar, gives notoriously lousy results with a needle biopsy. So when the hospital called me to come in for the needle biopsy I said no, I will skip this step and go straight to surgical biopsy and get a solid answer right off the bat.
My surgical biopsy was surprisingly easy! I put an ice pack on that night and went shopping the next day. Good luck and hugs to you and your wife.
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scrv, our diagnosis is very similar. You had surgery on 1/3 and I had mine on 1/4. I was ecstatic when I woke up from my lumpectomy to hear that my lymph nodes were clear. However, when the pathology report came back, there were two spots in the margins that were not clear. My BS said there was not any breast tissue left in those areas because he removed so much tissue due to the size of my tumor. The only thing left would be to remove skin over half of my breast. My Oncotype DX came back at 14. I was very happy with that number. I did decide to go with a bilateral mastectomy with reconstruction because I felt like my left breast was going to be butchered. My BS said that they will not take the lymph nodes or remove muscle from the chest wall. It was difficult to give up my healthy breast but I just don’t want to live in fear of a cancer cell floating around. I want a good outcome both physically and emotionally. I won’t have chemo or radiation. I probably will go on hormone treatment.
Family history: My mother had two different kinds of breast cancer, one in each breast at the same time at the age of 76. She had lumpectomies and radiation and didn’t have a recurrence.
My BS always says, make the decision that will give you peace and let you sleep when you lay your head on your pillow each night.
Blessings..
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Alex, you mean "BIRADS 4?" BIRADS is the classification system used for imaging of breasts via mammography. 1=normal. 2=benign. 3=probably benign, requires followup exam or imaging after an interval (usually at least a couple of months). 0=can't tell from the original imaging and needs a more focused mammo &/or ultrasound. 4=suspicious for malignancy. (subtypes of a, b, & c with increasing levels of suspicion of malignancy--a=suspicious; b=moderately suspicious; c=highly suspicious). So here are questions you need to ask:
Was it BIRADS 4a, 4b or 4c? How big is the tumor? What kind of biopsy (fine-needle aspiration, core-needle, or incisional, aka surgical) was performed and by whom? Who read the results? What is the specialty of the "doctor" who called you today?
It is unusual but not unheard of to do an excisional biopsy (essentially a lumpectomy with narrow margins & without sentinel node examination) after a core-needle biopsy reveals no cancer cells. (Fine-needle aspiration biopsies are far less accurate). The usual followup after a benign core-needle biopsy result is periodic surveillance (imaging to make sure it hasn't grown or otherwise changed over time).
What kind of medical facility are we talking about: small-town hospital, medium but still not major medical center, breast health center, major medical center with university affiliation? The bigger the better, especially if it's a teaching hospital with a breast health and a cancer center.
From what you're telling me, the result was benign--something most of us here would have yearned for. You may be worrying for nothing.
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Hi, just jumped back in here to catch up a little (an impossible feat!) and to say hi and let you know I'm still with you guys. Things are still good 1 1/2 year post surgery and 1 year post treatment. I've been a year on Letrozole and have only had minimal side effects with it.
Vampeyes, I must admit that I still get tired by around 6 pm, but you are also way younger than I am.
Like the others, my surgery was quite easy. The SN incision gave me more trouble and I still get tiny twinges every once in a while. Just keep remembering though that even though you may seem to recover quickly, it is major and you need to not lift or overdo for a couple of weeks.
It's so fun to see the constants here, Peggy, Sandy, Poodles, and others. I'm really doing well and thankful to still be able to do my pottery and enjoy every day! Dara
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Hi Dara,
I on here once in a while, but I like to read the posts here as they are informative and funny at times by so many talking about their lumpectomies. It’s great to have people like yourself report on here to let everyone know how you are doing, and it sounds like you are doing great. I’m going through chemo with the exact same drugs as you had. Last treatment tomorrow and having really bad back issues due to the chemo. Did you have the typical 4 treatments and any problems with your hair growing back? I get nervous thinking about the lawsuits against Taxotere by those whose hair didn’t grow back.
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Nice to see you again, Dara. I'm mostly in stealth mode these days. Sold my house and living in my RV in Florida. Been on letrozole almost 2 years with few SEs. Honestly, at this point BC seems to be in the rear view mirror. Let's hope it stays that way!
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Welcome back, Dara! You're looking great!
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Hi Blair, Do you also have the neulasta patch after chemo? That gave me bone pain all over, but everything except the fatigue disappeared within a couple of weeks. I didn't have any problems with my hair other than it took forever to grow back. I finished chemo the end of Nov 2016 and I hate to say that I was still wearing a wig the beginning of June 2017. My hair in the picture has grown since June. It was short and curly and then just took off. I'm 13 months PFC and my length is about 6.5" which matches with 1/2" a month average growth. Just be patient! Any other questions, just ask. Dara
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Thanks Dara - I have a feeling I’ll be wearing wigs a long time! Living in FL the humid months are going to be tough to wear wigs, but it’s better than going around bald. The only good thing is that they don’t frizz in the humidity.
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Blair2 - It took awhile for my hair to grow back but when it did, it was the best hair I had ever! It was thick and wavy -and the color was black! After a year or so it went back to my regular straight hair (I had been getting it cut regularly because I wear short hair) Wigs will be hot here in Florida - I wore abbey caps instead -much cooler and they looked fine - at home I just went bald = my husband always said he liked me with the bald look.
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Hi IamNancy,
I used to live in Ormond Beach 26 years ago, so remember Daytona well, now in Lakeland. That’s great the taxotere didn’t keep your hair from growing. By the looks of my scalp, I think I’ll be very thin. It was thinning a lot anyways, especially as I went through the stress of waiting on test results. It was all over my bathroom floor big time! Of course, chemo made it fall out in clumps. Not sure if I’ll like the curly look if that happens, but one plan I have is to grow my natural color and see if I can live with it.
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Blair2 - my hair is thin now - I am thinking the anastrozole has made my hair thin ... actually I am worried I may end up baldish - the thick hair that first came in only lasted about a year ... also the black color was a shocker to me (it was just brown before) - don't be surprised if yours comes in a different color and mine was never curly but it was wavy and I had such a stylish short hair do...
Good luck to you
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