Lumpectomy Lounge....let's talk!
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Thanks DaraB, I appreciate the reply. No worries about the typos
There's always so much Conflicting info out there that I thought I would ask what you guys think. I trust you more than dr Google!0 -
Twin, this is a great article on this site that is really accurate and easy. It explains quite a bit.
http://www.breastcancer.org/symptoms/testing/types/oncotype_dx
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thank you SO much. I appreciate that. Very informative. This test scares me but at the same time I find the advancements in treating this desease amazing.
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Cinnamon, are you being treated by Dr. Sharpless at CTCA or Lake Forest Hospital? I concur with Molly--the sentinel node could have been biopsied by frozen section during your lumpectomy and the partial ALND done then & there. No reason to dig deeper now than level 2 nodes unless there's a positive one of those. The fewer the number of nodes taken, the lower the risk of lymphedema. Even a partial ALND does increase your risk considerably. Hope she warned you about that. She did have an excellent medical education, but do notice that it was completed at UIC...here in Chicago (where my husband did his internal med. residency & cardiology fellowship). “Tainted by the American medical system" is a loaded and baseless statement--especially when discussing med. school & residency training. It's the same in both countries. Her clinical career has been in large part in the American fee-for-service medical system, not a national-health (essentially managed-care) system, so I don't see how you can say she's not “tainted by the American medical system." (That's not to say that universal health care wouldn't be desirable).
Dara, my glucose is 93 and a1c 5.8--my doc is quite happy with that. He says new conventional wisdom in patients with well-controlled BP and a “favorable" total-to-HDL ratio (<5), is not to treat fasting glucose levels below 150 except with a low-carb diet...which I'm already on. My TSH is normal, so we can't blame my weight on my thyroid. MRSA swab negative. But we got the lipid profile back.....ugh. Total cholesterol (gulp) 305, HDL plummeted to 70 (still good, but not the 95 it was pre-letrozole), LDL >200 (higher than it's ever been). VLDL and triglycerides normal--in fact, my tris are lower than before. My total-to-HDL ratio is 4.4--not wonderful but not a red flag (<5 is “desirable")....except it used to be around 3. My primary says that lipid pattern is characteristic with letrozole, more so than with the other two AIs. But because letrozole is the most powerful at lowering estradiol and my other side effects are tolerable (and there is still little research comparing letrozole against other AIs or placebo in early-stage bc patients who've never had tamoxifen, nor those with family CVD history, he advises against asking my MO to switch me to another AI or tamoxifen--the latter of which increases stroke or coronary thromboembolic, as opposed to broken -plaque or atherosclerotic, MI).
Bob's response was “told you--my Lipitor bottle's on the dining room table, help yourself." But my primary says to hold off until I'm done with my surgeries, and then discuss whether to try Crestor or generic atorvastatin, and at lower or intermittent-dose levels. Given that my dad and three of four grandparents had M.I. histories (one died of her second one at about my age, my dad had his first two at 50 before an arrhythmia killed him at 72, a maternal uncle died of his first one at 49) and my mom's CHF was primarily but might not have been caused by only her smoking-induced COPD, and that I am now over 65 and on an AI, my CV risk has gone from low to moderate. He points out that even though ER+ bc is never really “cured," most women with it are killed by heart disease many years down the line, before either recurrence or death from mets. More ER+ early-stage women die of age-related heart attack or stroke than of breast cancer. So doing nothing is not an option. I asked about whether I need to change my diet, but he said that it is no longer true that eating cholesterol--or even saturated fat--raises LDL. My dyslipidemia is more a function of obesity, letrozole and especially heredity (neither of my parents managed to get their total cholesterol down below 250, even with meds--though my mom had extremely high HDL levels; had she never smoked she might still be with us). I asked what if a statin raises my glucose and he said that it would likely do so, but not high enough to warrant adding metformin. And my familial hyperlipidemia isn't high enough to warrant the new injectable biologics--which run >$14K/yr wholesale and aren't covered by Part D carriers--unless statins don't bring my levels down to normal.
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I also asked in my Triple+ group, but wanted to ask here (Sorry Hammer for repeat):
Did anyone question the receptor results (specific to me the Her2+) or request any additional testing?
While presurgery biopsy showed I was Her2- in both tumors, but the surgery biopsy shows one is Her2+ (level 3) and the other is still Her2-, I just keep wondering about it. They did it via the ImmunoHistoChemistry test (IHC), but now wondering if I should demand they retest with the FISH? Is it possible to have a false positive - and if so, is it bad to be treated for it with all that they are planning??
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reading all the posts.. I have surgery friday and had to get someone else beside my friend to take me to it and drop me off, and pick me up .. i was anticipating spending the day with my friend and having an easier day... somehow, being dropped off, picked up and dropped off just doesn't make the day better... i have some good neighbors though and will let them know i'm home alone.. and i'm in senior apartments, have a dining room that is also a restaurant, so can call down if i get hungry.. still not the same though as getting a pizza and sharing it... and emotions all over the place... like getting hit with a hammer.. over and over..
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IHGJAnn, yup. Hammer again and again. I'm sorry that you won't have anyone with you Friday evening. I'd volunteer but I already have plans. Sorry. You'll do fine.
HUGS!
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Thanks! I have some good neighbors and will let them know I'll be alone.. one of them got me collecting turtles... one of her signs she gives me says I RUN
like a herd of turtles through peanut butter, but I RUN... that peanut butter can sure slow you down..
Judy
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kd, how high were the original and the post-op IHC results? As a HER2- patient, it’s a bit outside my wheelhouse, but more than likely post-surgical results are considered to be the definitive ones. My own profile lists my testing as having been FISH, but it was actually IHC; I scored 1+, which is still definitely HER2-, on both path reports. (I didn’t know at the time I filled out my profile which test had been used so FISH sounded more familiar). Now the bco site’s been modified to the extent that not only can’t I correct it to IHC, I can’t even find a way to add Zometa to my sig. line. But if the final IHC test said your HER2+ scored 2+ (equivocal) or 3+ (positive but not strongly so) FISH might be a good idea. Treatment is driven by the most serious component of your path report, so it might be worth retesting that tumor via FISH to make sure, before you start down the road of chemo + Herceptin. Herceptin requires chemo, and even one unnecessary chemo treatment can cause SEs that only time can reverse.
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Hi everyone, It was disappointed yesterday met with my BS and he let me know that my tumor while decreased in size, did not go down small enough to guarantee a lumpectomy (3.3 down to 2.9). And after AC + Taxol (last one 9/01). He said I'm on the fence meaning I could have lumpectomy but it will probably be disfigured. He said I have to do radiation with lumpectomy. I can also opt for mastectomy😢 but then I may or may not need radiation. I don't like to see all of my breast gone but then again I don't really want radiation. Has anyone in the same boat and which one have you decided? He let me talk to a plastic surgeon to find out more. I see many ladies on here chose the DIEP flap surgery. That I heard is long and extensive surgery which I am worried about. How did you ladies manage? Thanks a bunch.
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Houston, what size bust are you? I'm a barely A and had a "chunk of 5 cm x 3 cm x 2.5 cm removed for my 9mm tumor. Mine was on the underside of my breast. My surgeon did things in such a way that you cannot tell I had that much removed and I'm sure fluid rushed in to fill that void because I really look fine in a bra. There are many things to consider when making your decision. You mentioned that you don't want to have radiation. Why? I had 33 sessions and had no SEs. Of course not everyone has such an easy experience. And remember that once that breast is gone, you can't get it back. Many women here chose a lumpectomy first to see if it would get clear margins. If the path reports and other circumstances dictated, then they had a mastectomy but most say they were glad they went "little" first. BTW, you still can have reconstructive surgery even without a mastectomy. Your insurance has to pay. Good luck making those hard decisions.
HUGS!
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Houston, has your BS mentioned oncoplasty to fill in some of the dent? Where in the breast is the tumor and could the incision be hidden, as Peggy suggests? How big is the breast (and could there be a corresponding partial-reduction of the other breast to transplant fat and achieve a semblance of symmetry)? You would certainly need radiation with a lumpectomy, oncoplasty or not--but while a mastectomy usually exempts you from radiation, there’s no guarantee of that. My best friend had multifocal DCIS in a very small breast (AA cup) and ADH in the other one, so she opted for bilateral mastectomy, had negative nodes and therefore no radiation, and is happy with her choice. Tough call--only you know what fits your situation best (and what stinks is that there is often no “best” choice, only a less sucky one).
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Housten - hi..... my tumour was pretty big - 3.2. the surgeon said he wasn't sure if he would be able to do the lumpectomy, he was optimistic but said during the surgery he might discover he would have to preform a full mastectomy. in the end' he did what is called a quarter-lupectomy, which means he had removed a quarter of the breast. i guess it really depends on how you feel - to me, i am endlessly thankful that it was a lumpectomy and not the whole breast. they say that that with rads is "just as good" as doing the mastectomy - but honestly, i am just thankful that at least at this point i didn't lose the whole breast - just how i feel about my body... that is also because i want to avoid surgery as much as possible and so i really really didn't want to have to do reconstruction etc. with the lumnpectomy, even though it was a quarter-lumpectomy, i feel i can be happy with what i have and not feel a need to do any other surgery such as reconstruction.
i guess thats the difficulty - that we have to make really major decisions on our own, and it is so impossible to really know what to do. i think personally its best to consider it all and think what are the things that are easier for you to live with and which things you feel you really can't cope with
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Good Morning Everyone,
First off, Thank you all for your support and patience.
I had a bilateral lumpectomy back in 2005 for fibroadenomas which went cut-n-dry, both benign, and I was good to go. Nothing about what I am going through now is familiar. Heck, my surgeon back in 2005 was like "no worries these are benign tumors". No big deal. No lymphedema or redness or infection back then.
I called my physician's office on Monday and now have more info. My "official" diagnosis is "possible breast cancer removal of right breast mass". The woman on the phone apologized profusely and said that she coded the diagnosis wrong switching possible to breast cancer. So, for me this makes more sense while I am not happy about the familial turmoil and stress from this past weekend possible does not mean positive. Also, now my surgeon is going to look at my sentinel nodes, depending on what she finds she will either proceed with the lumpectomy or we will go from there.
I hope all of you have a great day today!!
Cinnamon, I wish there was more I could offer to help out. Hang in there and know that you have a ton of cheerleaders! *Big Hugs*
Saedie
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KD -- Unfortunately, it depends where they took the sample. The tumour can give one result from one spot and a different result from another. That is what happened to me. My first two tests were inconclusive. Then they did the FISH and it was positive. They did do the Onco type too and my result was 19. Because the FISH is the gold standard for HER2, we decided to go with that result.
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We came up to our camp site at our lovely north Georgia campground last night. It's very nice up here, what with the coolness brought on by the hurricane sweeping past south Georgia and South Carolina. Only a little spitting rain up here. We have spotty WiFi and cell coverage, so I'll be mostly off-grid this weekend. DH needs this so much. He has been out and about in the campground, walking the dog. I'm going to take him to get some BBQ and go to our local favorite apple orchard for some fried pies in a little bit. Maybe I'll even get with it and start a campfire, since it's a little cooler today.
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Enjoy this time, Poodle!
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Hi all. Thought I'd escape some SEs this time, but unfortunately, bone pain set in yesterday and big time fatigue. Then today woke up with the totally yucky tongue and mouth, even after rinsing about every 30 minutes since infusion. I guess these are just the SEs I get. I must say I'll take them over nausea any day. Did wind up with a lot of dizziness yesterday when I stood, so just kind of became a slug for the day.
Love hearing about all the camps, day camps, etc., especially towards the east coast. My parents weren't much for camping, but my DH and kids used to vacation frequently in Ensenada Mexico. We had a daily friend who had a huge beach house right on the peninsula of Baja and we would go there for a couple of weeks each summer and even later with others who had trailers in little resort areas nearby. We loved Mexico then, and really never worried about safety. It was a different time though, and haven't been back for quite a few years.
Poodles, there's a lot to be said for being off the grid for a while! We're all so tied to our electronics. I love all the connections, but sometimes think about the good old days, when people couldn't always get a hold of us at any instant!
Hope those in the path of storms are safe.
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Poodles, have a wonderful time and unwind. I can't think of anyone who needs it more thanyou do.
HUGS!
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I just got home from my lumpectomy surgery.. they took 2 nodes and not much out for the lump.. now for the waiting again.. my followup is on the 7th, but it's looking better then expected.. so, encouraging
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IHGJAnn, Glad to hear! Now ice and take it easy!!
HUGS!
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Crap - just found out that my surgical pathology also changed my grade. So not only did I become Her2+, but now my grade is a 3. Ugh. Anxiety continues to creep in at me...
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KD, I can sympathize with your anxiety creep. One thing I did was to keep reminding myself that there's absolutely nothing I could do to change anything and I'd still do what had to be done. Sometimes that helps. But it is still unsettling to find that change for the worse. Keep doing things that keep your mind occupied. And vent here!
HUGS!
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Glad that your lumpectomy & SNB were so uneventful, Judy. May the surgical path reports remain favorable!
Poodles, what a lovely place to be able to get off the grid for awhile. Have a relaxing, refreshing time.
Mary, as well as the other southeast & Mid-Atlantic coast’ers here, stay safe, high & dry. This too shall pass.
Quiet Labor Day weekend here. We stole San Diego’s weather and we’re not giving it back till Tuesday (when Chicago goes back into the late-summer schvitz again). Nothing to do today & tomorrow but walk, shop, laze, perhaps “buff” up a few of my song lyrics to update them or make them flow better in advance of the Fox Valley Folk Festival in Geneva, IL (where I’m emceeing & playing on Stage 2 at 11am Monday). Sun. we’re attending a surprise 70th birthday bash down in Oak Lawn for a friend with COPD, osteoporosis & brittle Type 2 diabetes whom we didn’t think would live past last Christmas after breaking her hip. She used to kick-box with a personal trainer, so it’s no surprise that she was able to battle her way back from skilled nursing care to assisted living and now (imminently) into the new ranch house she & her husband bought so she wouldn’t have to deal with stairs, he could be 5 minutes from his hospital, and their two Jack Russells could have a bigger backyard to romp free. (They’ve downsized their menagerie--they used to also have a German shepherd and a pair of potbelly pigs; every time I see that Chase commercial with the couple walking their pet piglet along Venice Beach to the tune of Shaggy’s “Mister Boombastik” I think of them. Her husband was out walking one of the pigs in Lincoln Park one day; when a woman asked him what kind of ‘dog’ that was, he replied “It’s a schweinhundt”).
Tuesday I'll prepare for my cataract surgery bright and (ugh) early Wed. morning. It’ll be a challenge not carrying stuff or bending over for awhile.
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IHGJAnn, glad you surgery went well. Rest and use ice. KDTheatre, I am sorry about the changes to your grade on your pathology. Just remember that higher grade tumors respond better to chemo!
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KD, so sorry that your surgical path report was not what you’d hoped. But you will have two weapons that we low-Oncotype Luminal A ladies don’t: effective chemo and targeted therapy. At least now you know your plan going forward.
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Thanks Everyone! I'm glad the surgery is over, they took two nodes, so it'll be another wait to followup on the 7th.. still feel ok with what's happening, but have had itching for the last 3 - 4 days... now i can get out the benedryl...
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KDtheatre, I hope this isn't a duplicate response. I don't recall if I replied to your post about HER2 status or just intended to do so. Fibromyalgia brain fog! I think it's very reasonable to ask for a FISH test when your status changes as yours did. Both my biopsy and surgical solid tumor IHC pathology reports were equivocal so a FiSH test was automatically processed. If your IHC was a 3, your insurance company may balk, but I would sure give it a try.
In my case, both biopsy and surgical reports were hormone receptor negative; however, the biopsy FISH was HER2 positive, but my solid tumor showed negative. My slides were sent to the Mayo Clinic, but that doctor said it was "likely" triple negative. My MO wasn't satisfied so ordered a Foundation One genomic test. We hope to have results by 9/12.
I think the solid tumor is generally given precedence because the pathologist can review multiple slides and select the most representative one for the FISH test while the biopsy only provides a handful of tissue samples. It's also my understanding that a tumor can be heterogeneous; that is, contain sections that are HER2 positive and others that are negative.
Given that these tests dictate whether we get targeted treatment, I find that disconcerting. I declined neoadjuvant drug treatment, but if I'm really triple negative, two of the four drugs prescribed (Herceptin & Perjeta) would have been of no benefit. On the other hand, I definitely don't want to be triple negative because of its poorer prognosis. Because this cancering stuff isn't stressful enough. =8-0
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Thank you ladies for your advice it certainly make my decision a little easier. Despair- you sound like how I feel. I didn't want to lose the whole breast and lean more toward lumpectomy. I was hoping the tumor goes down Alot smaller. I have right breast with size C and the left breast slightly bigger so I always wear a size 36D. After my pregnancies 1995, and especially after BC both Breasts were dropping. The tumor is in the left breast 6cm above the nipple.so it's in the front. Also there were some calcification, and 2 lymph nodes. I don't know how good this BS but he did say he can try the lumpectomy first and see how it goes. I agree with Peggy once your breast is gone you can't get them back. Look like I will stick to lumpectomy and then radiation. I like to know about the radiation. Peggy, I like to known how do you avoid SE cause with left breast there usually scares with the lung and heart damage. Thanks a bunch ladies.
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Hi ladies,
Found so much helpful information here. Now I have a question. I had my lumpectomy about four weeks ago, now I always feel the pain around the rest part of my breast rather than the part near the wound, specially when I touch the skin, has anyone had the same feeling before?
Shirley
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