Lumpectomy Lounge....let's talk!
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PontiacPeggy, RobinLT and Everyone, No this female surgeon was not having it any other way but hers and IF I was not in this position of knowing this thing was left in me for years, I may think otherwise but I just want this out A.S.A.P. like it should've been done 2 years ago! I'm cringing at the thought of going back to Sloan Kettering tomorrow to meet with my 1st surgeon but it's to speak about surgery, what he said during the last visit. I'm also resenting going to Manhattan on 9-11 but he's going away for 2 weeks. Seems to me the bigger the hospitals, the less personal care though this Dr. does have a good rep. I still have to find the notes and questions to get answers tomorrow, assuming he'll be setting me up with a date, so I can do pre op tests while he's away. I so wish I could find an excellent specialty surgeon that I am comfortable with and it's not me since I am easy going. Basically, this shouldn't be happening! I appreciate any good thoughts and Prayers! Thank you! I'm getting more nervous by the day!
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I had the same problem once I started radiation. It seems like it is resolving on its own. The finished radiation a couple of weeks ago.
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MFPM, what a difficult situation! I'm sorry you aren't getting the resolution and respect you deserve. It's all so exhausting, isn't it? Why is good care not a reasonable expectation? You seem strong and determined. That will work in your favor. I often wonder what happens to those who aren't able to advocate for themselves.
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MFPM, hope the MSK surgeon can come up with a plan that works for you. And I hear you about going into Manhattan on 9/11—though this year all eyes will probably be about 1000 miles south.
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Gosh, Chi Sandy, I misread your first sentence and thought you were going to cut back in giggling and I thought that doing so would be so out of character.
I rarely post but look forward to each of yours--filled with insight, clarification and whacky humour. Keep them coming, please.
And thanks all contributors. What a wealth of information!
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Brightness456 & ChiSandy, I don't know how I advocate any more, just so tired and it shouldn't be this way. I surely wish I advocated and opened my mouth to the Dr. who decided not to biopsy this 2 years ago!
I went to Sloan yesterday and met with the original surgeon who I used in 2016, the 1 who got angry when I mentioned it was left in there! Anyway, he was a charm this time but I didn't get hardly any answers. When he said mastectomy, I said I surely wish it was only a lumpectomy again to which he said whatever I prefer. I told him that I knew this was labeled more aggressive and invasive, but he followed me in the hall telling me to strongly consider a lumpectomy. IF I thought it was the right thing, I'd be doing the happy dance right now but been seriously thinking. This thing survived 9 months of chemo, 3 months of radiation and another Dr. told me though labeled in situ, it's invasive not knowing if it's in breast tissue, though wish they could see every cell which of course they can't. Before leaving, I wanted to speak to the surgeon again but of course the nurse had to relay the question as to which is the best and he said there's a tiny increase in risk with a lumpectomy, plus I know already having rads, I can't get them again. She said he wouldn't say it unless he truly felt it, but I still don't know. I'm afraid as we all are and have to start pre-op tests next Monday, Tuesday, then the following Monday and surgery on September 26th. I have to call him when he gets back from vacation to tell him of my choice.0 -
Oh MFPM. I don't even know what to say. It sounds like you are in a tough situation for sure. I understand what you mean about getting so tired you can't advocate for yourself anymore. My life aside from cancer seems to be falling apart too. I can't grasp that I'm supposed to somehow juggle all these things and focus on healing at the same time.
I think you have a good point about it surviving chemo and radiation already. If I were in your shoes, I might opt for mastectomy just in case anything else is hiding in there, but of course it's much easier to say what you'd do in someone else's place than to actually do it to your own body. How many times have we all heard "I'd just get them both cut off so I wouldn't have to worry" or "it's only hair, it will grow back" from women who do not have breast cancer.
I wish I had some wise advice for you, but I can't even handle my own life right now. I'm hoping for wisdom and peace about a decision for you
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MFPM, your posts gave me a clue as to what's going on now. You did not have an ipsilateral recurrence of the 2015-6 tumor, because even though it's in the same breast, this new one has a different genomic signature and is therefore a new primary tumor. “It" did not technically “survive chemo...already," because it's a new primary (even though it may have been wrongly dismissed as a cyst originally—as will be explained in the following paragraphs--though radiation might have affected it, chemo didn't because it's a different kind of tumor). Your original tumor, having scored 5 out of 9 on the Nottingham score, was “only" Grade 1, but if it was PR- and got 2 or 3 points for its mitotic rate, that may be why you had chemo.
The new one is Grade 3 (Nottingham score 8 out of 9), which would be disheartening if it were IDC; PR+ is a good thing (assuming it's also ER+)—it indicates a Luminal A type of cancer, which is less aggressive regardless of grade. But the biggest clue is that your surgeon mentioned this new one is "in situ." That means it's DCIS. Even if it was pre-existing, it might not have been vulnerable to chemo that first time because its cells didn't divide rapidly enough. Chemo destroys only rapidly-dividing cells, whether tumor or normal (such as hair follicles, mucous membranes and bone marrow). DCIS is not given chemo because it can't spread beyond the ducts.
Now, in rare cases a local recurrence of an original tumor might have a different grade or hormone-receptor status, but it is very rare. Usually recurrences are genomically identical and of the same or higher grade, but not a wholly different and less aggressive type. When an invasive cancer such as IDC recurs (whether local or metastatic), it recurs as invasive, not DCIS. DCIS has a different histological and genomic signature and unless it mutates and becomes IDC it cannot leave the ducts, only grow within them. Therefore, even if Grade 3, a DCIS tumor isn't as dire as a Grade 3 IDC, because by definition it cannot metastasize. And when it comes to hormone-positive DCIS, there is a version of the OncotypeDX genomic assay test that determines not chemo vs. no chemo (chemo isn't given for pure DCIS of any grade) but radiation vs. no radiation if lumpectomy is elected. You had whole-breast radiation, so you are correct in assuming you can't re-radiate. (You could if your prior radiation was partial-breast and the new tumor lies outside the first radiation field—but that ship has sailed).
So now I understand the dueling-surgery opinions. Your Queens surgeon assumes that because you can't get radiation, and because you already had one lumpectomy that took part of that breast and a lumpectomy would leave you with a much smaller and possibly misshapen breast, the best course of action is a unilateral mastectomy with immediate reconstruction for symmetry. The reconstruction would probably have to be “autologous," or from your own tissue elsewhere in the body (usually some sort of “flap" procedure using part of your abdominal or back tissue) because tissue that's been radiated doesn't take implants (and the tissue expanders that precede them) well. She knows the oncoplastic surgeons at her hospital, and believes they'd be better able to get a good result if they are present and observing her in the OR as she operates. She also suspects that because it's Grade 3, its OncotypeDX score might be too high to avoid radiation after lumpectomy—but radiation is nearly always unnecessary after a mastectomy for DCIS. And if the OncotypeDX score would be high enough for you to require radiation, a lumpectomy would be inadvisable regardless of the cosmetic result because you can't radiate the same tissue twice.
OTOH, your MSK surgeon, knowing that because your new primary tumor is DCIS and the OncotypeDX score might be low enough to let you avoid radiation after lumpectomy, advises you to choose lumpectomy because it is a shorter and less complex surgery and recovery is much, much faster and less likely to have complications than might mastectomy with or without reconstruction. You usually don't get drains with lumpectomy, either, so the chance of infection is lower. Mastectomy usually requires at least one overnight hospital stay, if not two. Lumpectomy is almost always same-day surgery. (And his fee for lumpectomy is likely lower than for mastectomy). He probably reasons that you can always go back later and do a mastectomy if necessary, but once a breast is gone it's gone and even the most convincing-looking and symmetrical reconstruction will not function like a real breast (nor have much if any sensation).
Both opinions and options are valid. The ball is in your court. I know that's not what you wanted to hear—you were surely hoping for a clear-cut answer. And even though it's DCIS, getting cancer again still sucks. (The above presumes that your new tumor is actually in situ).
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Peggy, the Nottingham score is used to calculate grade. There are three variables that determine grade: degree of differentiation between tumor and surrounding healthy cells; mitotic rate (how fast the cells divide and therefore how fast the tumor grows); and percentage of tubule formation (the more cells resemble little tubes, the less aggressive—a very few breast cancers are pure tubular, which has the best prognosis of all). Each of those three factors is assigned a score of 1 to 3: 1 is better. Highly differentiated, low mitotic rate, high % of tubules are all worth only 1 point each. The lowest score possible is 3 out of 9, the highest is 9 out of 9. A score of 3, 4 or 5 out of 9 is Grade 1; 6 or 7 out of 9 is Grade 2; 8 or 9 out of 9 is Grade 3. Sometimes a “higher” Grade 1 (5 out of 9) ends testing “intermediate risk" on the OncotypeDX 21-gene assay because of external factors such as % of ER+ receptors, PR status (PR- is more aggressive), and Ki67 that are not components of the Nottingham score (conversely, some “lower" Grade 3s—8 out of 9—test "low-risk” on OncotypeDX for the same version). That could be why a Grade 1 IDC tumor might get chemo and a Grade 3 might not.
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MGPM
My only advice is to slow down even though every fiber of your being is probably screaming out to get this taken care of!!!
But my one regret after everything but the AI is behind me, is that I made decisions too quickly. There are a couple turning points where my wiser inner voice was saying "nope." But my sense of urgency (CANCER!!!) led me to go with what the experts proposed. (Except for reconstruction. That was never an option I would accept.)
It's so common to question everything after your mind has had a coupe days to process the information and your feelings.
Time and research and just sitting with the information will eventually help you know which road to choose.
Best wishes,Robin
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Sandy, thanks for the info!
HUGS!
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MFPM, I had mastectomy after lumpectomy. I am glad I did because there was DCIS hidden in the nipple stem. I had radiation following mastectomy due to two positive nodes. I had successfully had reconstruction with implants after radiation. I waited 1.5 years to allow my tissue to heal before exchange surgery. If you have any questions please feel free to PM me.
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Hi Everyone- I previously posted under waiting for surgery and now moved over to this forum. I just had a lumpectomy on Monday 9/11 and am waiting for my follow up appt next Tues to see my pathology report. I go to a very respected cancer center in Philly and trust my doctors however my tumor was on the larger side at 3 cm with two smaller satellite tumors very close by. My surgeon was confident a lumpectomy was the right choice for me. I had a MRI before surgery as well. My question is for those who had a lumpectomy for larger tumors. I know everyone is different but did the lumpectomy turn out to be the right choice for you? Waiting for my follow up appt is hard. Thank you for any insight!
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Tri-lady7: The doctors first told me that my tumor was 2 cm. Then right before surgery they said there were two adjacent to each other. Then after surgery it was determined to be one tumor that was 3 cm. I had a lumpectomy performed and am pleased with the results. I have large breasts and the difference in size is hardly noticeable. The pathology reports were grade 2 with ER+/PR+ and HER2-, clear SNB and clear margins. My incision was made at the bottom edge of my nipple and will be barely noticeable after my incision heals completely. My oncology said I would need chemo due to the size of the tumor unless my Oncotype score came in low. It did come in low at a score of 16. I then had radiation (3 weeks hypo fractional) that was finished a few weeks ago and just started my hormone therapy of Tamoxifen for 10 years due to my relatively young age of 48. The wait for the follow-up visit was EXTREMELY HARD, very stressful until it's over. I wish you the best. Be sure to let us know how everything works out for you at your appointment.
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Hi Shockedat48- thank you so much for your response. Based on the MRI my doctors knew the @size and the smaller satellite tumors were very close. Because of the close proximity my doctor believed a lumpectomy was a good decision. I am nervous about the size but do trust my doctors. I am also 48 years old and don't want to worry about a recurrence. I am praying that there will be clean margins and clear SNB as well. I will let you know after my appt on Tuesday. Thanks again
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Helloooo ladies! (Sounds like a creepy pick up line! Lol)
I finally met with my long time, much beloved primary physician again. Just for a good long conversation. Many doubts were addressed and questions answered. He agreed to take over doing labs for my MO who shares a lab with 8 other onc docs and it's basically a depressing hamster wheel. So glad to leave that behind and feel sorry for the poor souls who have no other options.
Anyway... we ended up discussing trying an anti-depressant that will also address some other issues like hot flashes, while I hang in there with the side effects of Anastrozole...which is still th best option for me.
So... Effexor and Wellbutrin, anyone?
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RobinLT: At my breast cancer support group yesterday, they discussed a clinical study that was available for post menopausal woman to use Wellbutrin to see if it increased libido in woman doing HT therapy. I couldn't participate because I'm premenopausal. Maybe you can get the meds for free
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ChiSandy, Brightness456, Molly50, Am just reading your replies and advice tonight before bed as I haven't logged in here in a few. I've been in a bad way emotionally the past few days, not right. I think when there are doubts, it changes everything. Sloan now has me set for 4 appts., all in different buildings, no parking garages and I'm burning out but there are other factors too, all a pain. My nerves have been shot but I think I got overloaded thinking and being swayed the other day which did this to me. For a few days, I've been shaking and crying, unable to stop this feeling even when I try to do things. Before, I somehow could put it in the back of my mind. Though as I mention, I have some doubts but will go for their tests this Monday and see my own cardiologist on Tuesday. I just wish I started with another Dr. and to change now would be crazy, right?! Then somehow I say this Dr. is skilled in this surgery, constantly fighting with this in my head. ChiSandy, I so wish you could be my Dr.! Last time I did chemo out of precaution since my onco score was 26. You are so knowledgeable and I will send you a copy of my report so maybe you can figure it out to explain more as I'm leaning towards a mastectomy, which I never thought I would. Every Dr. but him in his 2nd thoughts said I need a mastectomy which of course I'd prefer a lumpectomy though am terrified as it is. I don't know how to deal with any of this and guess it's true. I've been alone in this too long and trying to be strong. Tomorrow I have to make a quick appearance at a park street fair, not performing this year then onto a school reunion. Both of these things I've been looking forward to but don't know how I'll even get myself together, feeling like I snapped. I will write more soon and much love!
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ShockedAt48
First of all. Sucks to be 48 with BC. I was surprised at 63 but would have been beyond shocked at 48.
Thanks for the info. I will check it out.
I have never been a group joiner, but a support group for this makes sense. I may have to check that out too.
Robin
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MFPM, I don't see how your surgeon could recommend lumpectomy, regardless of his skill, because for an invasive cancer it requires radiation afterward but you already had whole-breast rads on that breast. I would seriously question why he would be willing to do it and forego radiation afterwards--just too risky unless you're old enough for the rads to pose a greater risk anyway (you & I are of the same vintage and for me, rads were a must). Your preference for mastectomy is valid for that reason alone. And how can one of the world's top cancer centers NOT have parking garages, especially in Manhattan where street parking sucks (when we go to Manhattan we don't even rent a car), and commercial garages are both pricey and blocks away? Do they expect cancer patients to walk that far or just assume they're all coming by taxi, ambulance or medical-car?
Robin, I've been on Wellbutrin since 1999. (Generic bupropion). No side effects for me, and the generic is affordable. Before that, when Redux was pulled off the market and I was in rehab for a complex broken leg surgery, the physiatrist (physical med specialist) prescribed Effexor for me. I was edgy, nauseated, teeth grinding. My appetite was awful (though it did help with weight loss because of that). They don't call it "side-Effexor" for nothing.
Shocked, our stats are the same except for tumor size (mine was 1.3cm), choice of endocrine therapy (AI) and age (I was 64 at diagnosis). At 48, assuming you are at low cardiovascular disease and endometriosis/fibroid risk, Tamoxifen is a good choice. It will keep your bones strong. When you go into perimenopause or display any evidence of heart disease or uterine problems, you can always revisit that choice and opt for a surgical solution or ovarian suppression to hasten menopause and switch to an AI.
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Hi Everyone- I had my lumpectomy last Monday 9/11 and immediately started to get headaches. They seem to come and go but now a week later I still got one today. I'm wondering if from the anesthesia
I have my post op appt tomorrow so I will tell my doctor but was wondering if anyone else got post surgery headaches? Thanks!
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Hi all. I am 43 and was just diagnosed with bc last Thurs., 9/14. I met with the breast surgeon today and it appears my options are lumpectomy + 6 weeks radiation or mastectomy w/ tissue expander and eventual reconstruction. I am trying to weigh the pros and cons of each and would like to hear y'all's stories (yes, I am a southerner) the good the bad and the ugly. I honeslty don't know which way I am leaning as like I said they both have their pros and cons. Thanks in advance. Glad I found y'all.
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Quinian, Welcome! Boy I wish I had some great thoughts for you. I believe that in many cases going with lumpectomy is an excellent choice. You still have your breast. Nothing can replace it. If things change after your Lx you can always have a mastectomy but start "small." Keep as much of your breast as is reasonable. Some cancer centers have different protocols for radiation. I had 6 weeks of rads but now there are several other types that take less time. Others who have had them can chime in. Where are you located? Please share that with us (if you put it in your profile and make it public then we'll ALWAYS know where you are
). I had my Lx 3 years ago and have had no reason to regret my choice. My BS insisted that a mastectomy wasn't necessary because I had assumed it was. Also you might want to get a copy of Dr Susan Love's Breast Book - it is a comprehensive book on all aspects of your breast and breast cancer. Good luck!HUGS!
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I had a lumpectory and 4 weeks of radiation. The breast surgeon really went to great lengths to make it an option. - extra screenings, working with radiologist to determine the extent of my multi-focal "string of pearls".
I wasn't opposed to a mastectomy, but am glad a lumpectomy worked for me. It's nice to only have a small scar and a smaller firmer breast as the result. I plan on getting a reduction in the other breast later this year, so they match.
Making decisions about treatment is immensely difficult and stressful. Best of luck to you.
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I echo Peggy & SJI. You can always revisit the decision to do a lumpectomy and later have a mastectomy, but the reverse is not true. I had 16 radiation sessions (3 wks M-F and the following Monday), to the tumor bed. The size of your tumor, the fact it's Grade 1, and partly DCIS will probably make it highly unlikely you'd need anything other than surgery, radiation and a few maintenance years on a drug designed to deprive any stray tumor cells of the estrogen they need. Because you are young (and presumably still menstruating), that would probably be Tamoxifen--which blocks the tumor cells' estrogen receptors but doesn't deprive the rest of you of estrogen. And unlike what we golden oldies have to take, it actually strengthens your bones. (A similar drug, raloxifene, aka Evista, is prescribed to non-cancer patients for osteoporosis prevention or amelioration).
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Anyone taking Letrazole for hormonal therapy? My oncologist said it has less side effects than Tamoxifen.
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I'm on letrozole. It's one of the class of anti-hormonal drugs called an aromatase inhibitor (AI). It shares some side effects with Tamoxifen, but there are some important differences in how they work that makes for different side effects.
Tamoxifen doesn't affect estrogen production, but rather blocks tumor cells' access to it. AIs target the process by which the body makes estrogen after the ovaries are gone (surgery) or nonfunctional (menopause). Even without functioning ovaries, our bodies still make estrogen via conversion of the androgen made by our fat cells and our adrenal glands. (Losing fat won't help--because you can't lose the fat cells, only burn the fat they contain). The liver secretes an enzyme called aromatase, which acts as the catalyst for this conversion of androgen into estrogen. AIs inhibit the action of aromatase and keep it from making the conversion process possible.
AIs are generally more effective, but they cannot be given to someone with functioning ovaries. AIs stimulate the release of the pregnancy/fertilization hormone HCG, which in turn induces the ovaries to make estrogen. So that's why, by & large, younger women get Tamoxifen while postmenopausal ones get AIs. Both classes of drugs can slow metabolism, cause weight gain (or inhibit weight loss), hot flashes, joint pain, thinning hair and drying skin (inside & out). AIs also can accelerate aging of bones (causing osteopenia or even osteoporosis). Tamoxifen strengthens bones. But Tamoxifen carries a risk of blood clots (bad news if you're at risk for cardiovascular disease) and endometrial hyperplasia (growth of uterine lining), which can morph into endometrial cancer.
My letrozole side effects are few & mild.
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I just wanted to say thank you again to chisandy. Although what you've just described doesn't affect me (ER/PR-, her2+), I love that you explain technical things in a way that makes them understandable to regular people. For me, because of the education, information and explanations I received here, I was able to go back to my doctors and ask the right questions. Without you and others like you, I would most likely have been paralyzed in a state of shock and wouldn't have had much input into my own plan of care.
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Chi sandy- thank you for the information, brightness is right about it, with your information we can ask the right questions
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I've been on letrozole for 18 months now. My main side effect is joint pain.I have arthritis, but it has really gotten worse. The MO says it's the letrozole. He offered to try me on something else, but I declined. Better the devil you know, than the devil you don't know. Interestingly, weight gain hasn't been an issue. In fact, I've lost 20-lbs in the last year. I could stand to lose more, but hey! 20-lbs!
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