Lumpectomy Lounge....let's talk!
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Hope you all saw this summary, posted by the moderators: http://www.breastcancer.org/research-news/oncotypedx-intermediate-results-skip-chemo
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momallthetime:
I agree. I was getting mammograms every year and then all of a sudden I didn't have one for four years because of the new recommendation to not have one until you are 50. At the age of 48, I felt a lump in my breast and went to the doctor. If I had not felt that lump, I am sure my cancer would be much more advanced because it would have been two years until I had a recommended mammogram. I believe that they are making a mistake. Not only are the new guidelines of no mammogram until you reach 50 but no more clinical exams during your gynecologist appointments anymore. NOT ONLY THAT, no more recommendations of self-checking! They believe it produces too many unnecessary exams and procedures. So someone like me would probably be dead to save the inconvenience of having more procedures. AND WHEN I SAY INCONVENIENCE, I REALLY MEAN THE ADDITIONAL COST THAT THE MEDICAL INDUSTRY WOULD HAVE TO PAY. I look at my daughter and think, so no more self-exams, no checks by the doctor, no mammogram until age 50. That's just a disaster waiting to happen. If young women are not told to do self-exams they will not have a clue to what feels normal and what doesn't. That recommendation is what saved me. I just don't understand. I guess you sacrifice a smaller percentage to death but save the insurance industry money and women worrisome procedures. Thanks for letting me vent!
At first I thought Kaiser was negligent because they had not performed the necessary preventative care. But then I found out about the new "recommendations". The recommendations are varied depending on the agency. The medical industry can choose which one they what to follow. I believe that this will create a whole lot more expensive treatments when they catch these breast cancers at more advanced stages.
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I had the Brac 1 and 2 test done when I was dx because of high risk. My MO at the time recommended it and I'm glad I had it done. It came back good, that I did not have the traits they were looking for. Which benefits my sisters as well because I had it done.
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Shocked exactly, it's all about the money, nothing else. They don't have concerns for those poor women (cynical) that are worried about their results, they are worried about the biopsies that they will have to pay for to save that one woman out of 4. And for sure the prostate clip proves that.
But what happens then, is when i'll go to the doctor and they will recommend something, i will not know if it's because it's really so or because they are just towing the line. And if you live in a small town, and you really don't have the options of 2nd opinions, ughh don't get me started.
Sloyd66 what do you know about BRCA? You were high risk, why? Age? I'm trying so hard to really find the right answers. My daughter was in her 20's when she found her lump, she had the testing done and it was negative. But i get conflicting info re: her sisters and I. We are all being thoroughly checked. But to do or not the testing? From what I read if she is negative her little girls have nothing to worry about. But what about us? Different doctors say different things. For myself, i could easily have it done, if I have to do a MX no big deal. But my daughters are young adults, they don't have kids yet, it's too many details, so it's not as clear cut. I keep trying to get the right info.
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Hi HapB- my MO is recommending MRIs every six months instead of mammograms (I don’t have dense breasts) for more accurate scans. Is that an option available to you?
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HapB, that’s their disclaimer so you don’t sue them if you have a recurrence. I was just at my breast center today for US and Mammogramn of two suspicious lumps (scar tissue). The disclaimers I had to sign said almost the same language as your letter.
The next step would be US if you have reason to believe that you might have a recurrence. Then a biopsy, then a MRI.
I want a PET SCAN. I was reading an article this weekend about how effective Pet Scans are and how much information can be obtained regarding breast cancer. But they are expensive and are full body scans so more exposure to radiation. The excuse that is given to not order one is the risk of “false positives.”
I can deal with too much information. It’s not having enough that is the problem
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HapB- you should always have an ultrasound with dense breasts, not just the mammogram. My IDC did not show up on a mammogram, the US showed it clearly.
Shockedat48- I think it's a big discrepancy from insurance carrier to insurance carrier. Or NYS makes them follow a different protocal. I've had a yearly mammo & US for 25+ years. Back in my 30's I had a breast cyst, going forward I had yearly mammo & US. I have never missed a year and hate to think if they'd have told me wait 4 years! Not acceptable.
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I get 3-D mammograms due to my dense breast tissue. My MO thinks that's best. I have been getting mammograms for 30+ years annually. Never had an issue with my insurer paying as along as it was 365 days after the last one (this was before I was on Medicare though probably the same now). This seems to work for me and my MO.
HUGS!
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Weighing in on the yearly screening conversation. Like you, CindyNY, my first biopsy was a long time ago (43 yrs ago. I was 24) so I have had yearly mammograms ever since. Also had a number of other biopsies over the years. Several years ago added MRI once a year and 6 months later, Mammo. It was the 2016 MRI which spotted something - benign - in 2016 (couldn't find it with mammo or ultrasound). And most importantly, it was my MRI in March of this year which found something unseen by mammo or ultrasound and which turned out to be cancer.
So I don't know what my docs are going to recommend for the future for screenings but I can tell you that I will insist on at least yearly MRIs and yearly Mammos. Nothing less.
In 43 years I’ve never had an insurance issue with regard to screenings. And I had genetic testing last year and insurance paid for it (negative but - hah! - I have cancer).
My 34 yo daughter, knowing the family cancer history, has already been tested for BRCA1/2 (negative) and has started having regular mammograms.
Anyway that's my story.
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HapB, you haven't had a breast MRI? A dye is definitely used. And the 2 I had, the dye was injected after about 30 minutes lying on my stomach with my little breasts hanging down through holes. And during that dye you cannot move. I found it challenging. My first MRI was before my surgery and the 2nd was after my first post-surgery mammogram - just to make sure. None the 2nd year. I moved to Spokane after that one and my MO hasn't seen it necessary to order an MRI (although I do see him Wednesday for my 6 month checkup).
HUGS!
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I wanted to have a genetics test but Kaiser told me that there's not enough cancer events in my family to warrant it. I have a first cousin that had breast cancer in her early forties also. I asked about ultrasound or MRI for annual checks and was told that it wasn't necessary as well. My husband asked about a full body scan and the oncologist said that it would cause undue stress and they would have to provide treatment if the cancer was systematic. Without that knowledge a woman could have months of not being treated for something that would not change their survival rate. She did not recommend it.
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Breast MRIs are never particularly comfortable - you’re lying face down after all. But if you’re at a breast-centered facility very often the setup is easier on you in terms of comfort. And all MRIs require absolute stillness. I listen to music and mediate. Yes, contrast dye is used because it is the “enhancing” or uptake of the dye by blood vessels in tissue that often indicates suspicious activity. And finds the troublesome tumor or thingy.
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I didn't mean to imply that breast MRIs are terrible. They aren't. And they are necessary. But for me, they were very uncomfortable and it was not a breast center which could make a huge difference.
HUGS!
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HapB, please go to your Profile and on the SETTINGS tab, make each and every item about your diagnosis and treatments PUBLIC. It is very difficult to answer some questions without this information. Thanks!
HUGS!
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Shocked Kaiser is going by statistics, the only problem is that you are a Human being not a statistic. Do you have dense breasts? Then for sure you should ask for a US. Everyone knows nowadays, that an US is a go to for dense breasts. And I am sorry, but a doctor to patronize people like that, telling us what will traumatize us or not, and then say yes, but if we were to find something then we would have to treat it, how ridiculous is that?? One thing, i could tell you, you could try to follow your TM's (tumor markers), and blood levels. NOT that it's a sure thing, but at least it's something. If there are changes you could be more concerned that something is maybe going on in your body. And if you know yourself well, if you feel pain in your spine, shoulder or something is not right, then for sure insist on a PET.
HapB yes, they sent you the letter not wanting to get sued. But, they are saying you have dense breasts, then for sure a US is warranted. It's what's done. Many breast organizations fought for this right. They even have to tell you how dense your breasts are. Usually the older a person is the fatter is the breast and it gets less dense, but each person is differently. That's one of the reasons why the medical field says wrongly to a young person oh don't do a mammo because cancer won't show. NO, you do the Mammogram, then an US and go from there. Dense, just means that in the Mammogram it shows white, and cancer shows up white in the Mammo, and that's why they say it would not be beneficial. BUT it's not true, in the eye of a experienced Radiologist they could see maybe and always recommend US for dense breasts. Period.
The rads issue happens to be an issue onto itself, but it's not the whole story.
PontiacPeggy again if you have dense breasts you should be advised to at least get an US.
https://alivewithjoan.com/videos/how_mammograms_mi...
this is another one, i wanna scream from the top of my lungs...
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MRI- I could be wrong, but didn't each of us have an MRI before we had surgery? I thought that was protocol.
HapB have you had surgery, a LX or MX with no MRI?
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I have no family history (on either side) of any of the cancers associated with the BRCA1/2 mutations (except a half-aunt who got melanoma from frying her extremely fair skin in Coppertone oil for decades). I knew that fully 85% of bc patients have no family history of it. But, in the interim between my lumpectomy and first MO appt., I read in Dr. Susan Love's Breast Book that if you have been diagnosed with breast cancer and are Askenazi Jewish, you should get tested for at least the BRCA mutations, maybe also other known ones. When I met with my MO, it was still too soon to set up my radiation plan--I didn't know my OncotypeDX score, and chemo is usually given before rads--and I was concerned that if I needed a prophylactic BMX, I could not get implants in a radiated breast. I told her I was Ashkenazi Jewish and she asked whether I had told my surgeon before lumpectomy. I answered that nobody had thought to ask about my ethnicity, just family history and lifetime duration of estrogen exposure (menarche, menopause, the Pill, pregnancies and the age at which I had them, breastfeeding and duration). She picked up the phone and called over to the Genetic Counseling Dept. at Evanston Hospital, explaining that if it were up to her she'd order the test right away, but hospital policy is to have counseling first (to get full info as to odds of finding mutations and what to do after results). Had the counseling two days later, and after a short discussion was tested right then & there. Even though I was not yet on Medicare, my insurance paid 100%. And I tested negative--so I still have both "Thelma" & "Louise." ;-) My Oncotype score was 16--and my MO messaged me in my patient portal inbox: "Good news: your Oncotype DX score is 16, so I recommend you not have chemo." That was Oct. 2015.
momallthetime, I am not saying that women should not be subjected to chemo and its side effects--what I said was that before the study came out, there were thousands of women who were needlessly subjected to chemo and its side effects because they did not derive (and would not have derived) any benefit from it. For women at high risk: under 50, peri or premenopausal, positive nodes, larger tumors, later-stage (II & III), grade 3, lymphovascular invasion, PR-, Oncotype score >15 (for under 50, and >25 for over 50), chemo would likely be a lifesaver--or at least a life-extender. But when I think of women >50 yrs old, with Stage IA, ER+/PR+, Grade 1 or 2 tumors and Oncotype scores of 18-25 (and at least one here given her first round of chemo before her score came back as 17) who had life-threatening infections, bone pain, hair loss & neuropathy (some permanently), steroid weight gain, fatigue, chills, fever yet whose recurrence and survival chances would have been identical to those of us on endocrine therapy alone, my heart aches for what they went through for nothing. The TAILORx study has taken a decade, with >3000 patients. The recommendations of this latest phase of it are hardly advising women to "play roulette:" they're based on years of women who scored 11-25 having been "randomized"--half assigned endocrine alone (Arm
, half assigned endocrine + chemo (Arm C). And the results were exactly the same between Arms B & C. (Arm A were the women scoring 0-10, not given chemo--and they were fine 10 years out; Arm D were those women scoring 26 & up who definitely got chemo).Look, it's no secret that even the earliest-stage ER+ bc will come back eventually, if you live long enough. ER+ cells can eventually (as long as 20 or even 30 years later) mutate to make their own estrogen. And those hidden ER+ cells, especially the slowest-dividing ones (which show up in the 21-gene ODX assay as not aggressive and therefore factor into a lower ODX score) are the most resistant to chemo. So zapping them with even the strongest chemo kills only the healthy fast-growing cells--that grow our hair & nails, make our blood cells, line our mouths & stomachs, maintain nerve pathways, etc. It's also no secret that getting "the full Monty" is no guarantee against recurrence--so many women here have had chemo, BMX and still had it recur locally or as mets. Now, years hence, science may come up with a new type of chemo aimed precisely at those cells and killing them before they can morph from "estrogen-takers" into "estrogen-makers;" but that chemo doesn't yet exist. Giving current cytotoxic chemo to low-Oncotype patients makes about as much sense as treating flu (viral) with antibiotics, which for years was often a knee-jerk prescription--but later on, antivirals like Tamiflu were developed. As one of the doctors in the study (in which, BTW, Big Pharma did NOT participate--it was gov't-funded) explained the new results: "It's not the size of the hammer, it's whether the hammer is the right tool for the job." And it's evident now: if the "job" is to prevent recurrence of ER+ cancer in low-ODX patients older than 50, chemo (the "hammer") is the wrong "tool"--the right tool is endocrine therapy.
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CindyNY, you are mistaken. MRI isn't always protocol. I did not get an MRI before surgery. I have fatty breasts, did not have a lump. the tumor showed up plain as day on the routine screening mammo (and the other breast was clean), and I had first a "close-up" spot compression mammo and then US to confirm that it was not a cyst but possibly malignant and a biopsy was necessary. Not everyone needs a breast MRI pre-op. It's generally required for lumps that are palpable but located in a dense breast, so they can't be distinguished from surrounding tissue via mammo.
And not all MRIs are given with contrast dye. Of all the MRIs I've ever had (3 knee, 1 foot, 1 brain and 1 wrist), I was given contrast for only the brain one.
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ChiSandy - thanks for the correction! I have dense breasts and my tumor was not palpable. MRI done before surgery, w/o & with contrast.
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Cindy- I don’t think it’s wrong to asssume that because something was done as part of your treatment plan, that it may be protocol for all. I would assume I was following a protocol. I had many scans done. I had a MRI before surgery, with and w/o dye, to thoroughly check everything including lymph nodes. I would guess that many women will have one before their surgery this year. It is uncomfortable but can lead to better results than just a mammo or US. In total- I had one mammo, 2 US including the one for the core biopsy and a MRI. All within the span of 2 weeks.
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I too assumed that if the biopsy came back positive for cancer then the next step is an MRI. The MRI can give the surgeon additional information, such as any additional lumps that can’t be felt or seen on the US or mammogram. It can give an indication if lymph nodes are involved (not always). It also looked at my right breast (the good breast) for any abnormalities or areas of concern. My right breast showed no evidence of disease. All of this information became topics of discussion when deciding with my breast surgeon lumpectomy or mastectomy. I eventually chose BMX when my margins from the lumpectomy were questionable
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This is a very important and intelligent conversation.
ChiSandy mostly i just wanted to give over what i've learned about dense breasts. My radiologist always does Mammo/Us alternating Mammo/MRI for my daughters. For myself it's Mammo/US.
Re: the other conversation about chemo or not, i take it very personal, could be because i've spoken to so many different doctors and the opinions are so varied. I have to "study" what you wrote. Thank you!0 -
@momallthetime They told me to have it done because of high risk due to family history. Mom had mastectomy, aunt, great aunt, grandmother all breast cancer. So because of that they felt it would be good I do it to see if it's in our genes. If my insurance didn't pay they said my mom could of done the test as well for us. But I did it and it came back negative meaning Braca 1 or 2 is not in our genes, meaning you're really not high risk it's just something that happen in our family with so many women. I went through a genetic clinic where counselor sat down and explained it to me and my mother before I did it.
I do agree that it's all about the money, and to me not everyone trying to save or cure pt's but keep them confused, scared and unknowledgeable.
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@momallthetime I was 45 when dx and tested. sorry I left that out
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This is such an excellent conversation.
One thing I want to mention to Bella2013: it was my annual diagnostic screening MRI which FOUND the tiny mass this year, a mass which turned out to be cancer. And it was my annual MRI which, 2 years ago, found another small mass (that doc called it a "nodule" - just semantics).
So the MRI is not necessarily a post-biopsy thing; it can be the precipitating screening. In my case this year, I had my annual mammogram in Sept 2017 (clean); my annual MRI in March 2018 (found something); second look using Ultrasound in April 2018 (US couldn't see a thing); MRI-guided needle biopsy in April (had to use the MRI guided technology because my tumor was so small); diagnosis April 10...and the rest is history.
If there's family history of cancer, especially breast cancer, very often a primary care physician - or a proactive one like mine - will prescribe the two-times-annual screening (mammogram & MRI) plus genetic testing. In the course of my genetic testing (I'm negative for 34 gene markers including BRCA1/2) my genetic counselor also ran my family-cancer family tree which resulted in a very useful number for insurance purposes: my lifetime risk of cancer. Mine was very high due to at least 10 family members (all my dad's side) who have had a variety of cancers including breast cancer. Generally insurance companies look at that and approve additional screening. (I am a big believer in being a pro-active and assertive medical consumer and if my physicians aren't on board with that, I find another doctor.)
Let's all keep talking, sharing concerns and, most of all, sharing information and facts!
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I just thought I'd throw in my MO's and surgeon's plan for follow-ups. Every 6 months I'll have a dye-enhanced mammogram. That's it for the screening unless they see something. No PET scans, no MRI's, no ultra-sounds.
When I discussed with my MO how I'd be monitored now that my treatment is over (chemo, LX, rads), she said I'd have a physical exam by her every 4 months for a year and then taper off. No special scans just to check. Just the 2 enhanced mammos per year. If I have a specific pain/ache, then they go to scans.
I got a little freaked out by her candor but she said they (Sloan Kettering) found no difference in length survival if you get yearly PET scans or wait until you are symptomatic. The idea that diagnostic scans can lead to earlier earlier treatment doesn't make a difference in outcome. It only exposes you to more radiation which is not ideal.
This arrangement doesn't make me feel the most at ease but I trust them and feel I've been treated very well at MSK, so I'll do it their way.
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Hey all -- so I know I SHOULD look through the 874 pages of posts to get my answers, but....
I'm scheduled for a lumpectomy with needle localization on the 18th. I understand I will go to the mammography area and they will numb me and place a needle to mark the area under U/S. And then I'll be taken to the OR. I'm not keen about seeing that needle stick out of me. Will they cover it up?
Also, since I haven't had surgery since I was 5...I've told I can ask for relaxing medicine, and that I won't really remember being taken to OR and moved to the table. Will I be somewhat clothed during that time? and please tell me they don't have to place a urinary catheter for this....please.....
It's outpatient, so I'll go home the same day. How is the pain? Will I be able to wash my hair the next day? And what can I do now to prepare for this?
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Robin, you'll be fine! I had wires marking my tumor site but they were bent down & covered so you don't have to look at them (although, out of curiosity, I did!). You'll be relaxed (take any meds they offer!) & wearing a hospital gown so you will be covered (just not fashionably). I don't remember a catheter but it's possible they used one during surgery (if so, it was removed before I woke up). My pain was minimal enough that an ice pack was sufficient to address it. I never even needed Tylenol!
Sorry, I don't remember how soon I was allowed to wash my hair but you will receive post-operative instructions before you're discharged. (I made an appointment to have my hair washed & blow-dried a couple days after my lumpectomy. It was a nice indulgence & gave me something to look forward to instead of worrying about the pathology report!)
If you're having lymph nodes removed, you might try to get an appointment with a Lymphedema Physical Therapist before your lumpectomy. It helps to have baseline measurements & (s)he could provide information on exercises, etc that are safe to do after surgery. And have a supportive bra to wear after surgery & a small pillow or a soft towel to support/cushion your breast in the car for the drive home.
My final advice is to avoid Dr Google & come here for information (& great support!). You've got this &, as we say here, we're all in your pocket!
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Robin - my needle was placed during multiple mammograms. I was numbed, they did their job, it was all covered up.
On the way into OR I was totally drugged. I remember being pushed down the hall, in a gown, totally covered up by a blanket. That's it until awake in post op. I don't think I could shower for 2 days. And I too don't remember a catheter but it could have been in & gone before I was aware of it.
Pain was minimal but they pushed some drug in my IV as I was coming to. Get your script filled before you go home, you want it handy if you need it. I took meds that night as prescribed (late surgery, home 8pm) by the next afternoon I didn't need them.
I had nodes removed, that incision bothered me more than the breast. You'll get through this. I'm sure others will chime in with more info. Best wishes to you!
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Thanks, Virginia and Cindy!
I'm a person who needs to know what to expect! And if they will cover up the needle in my breast, then I won't look at it!!
The doctor doesn't expect any lymph node involvement, so hopefully, there won't be any surprises during surgery.
Doc has already given me the prescription for my take home pain meds. And I was going to freeze a couple more wet washcloths to use as ice packs when I get home. Those really helped after the biopsy. And I'll remember to pack a little pillow for the way home.
Thanks for info. I'm really nervous since I've never had surgery before (at least not since I was 5). I do know intellectually that it will be fine, but my brain isn't doing a good job communicating with my nerves right now.
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