first step: lumpectomy vs mastectomy vs bilateral mastectomy?

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Emgee
Emgee Member Posts: 15
edited June 2018 in Just Diagnosed

Hello everyone: Just got dignosed last week after biopsy guided by tomography. The radiologist wanted to rule out ILC, after chasing a shadow in my mammograms and ultrasound for years. Instead, she ruled it in! Which is probably a good thing. MRI of both breasts was yesterday and my husband and I met with a surgeon this morning.

He is recommending lumpectomy and radiation followup -- between the mammo and the MRI he is estimating 2-3 cm of "cloudy" tissue needing removal; no involvement of second breast that he can see. I suggested bilateral mastectomy and he's willing to go that way if I choose it. My husband is 76 and in good health; I am 63 and in good health. But hubby already nursed one wife through 14 yrs of breast cancer (IBC) until she died nineteen years ago and when he begins to need care himself I really want to be alive and able to provide it.

The surgeon says removing the affected breast is one thing but -- although he is willing to do it if that is my choice -- removing the other breast also will not increase my chances of being alive and well when my husband begins to need help one little bit. What do you think?

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  • Runrcrb
    Runrcrb Member Posts: 577
    edited May 2018

    Emgee - sorry that you find yourself here. I suggest that you do some research (National Institute of Health, American Cancer Society, etc rather than simply googling) and consider talking to a medical oncologist. My decision was single or double as I had cancer in several places in the breast. For me, the risk of cancer in the second breast was extremely low and I couldn't come up with a reason to remove a healthy breast. My plastic surgeon reminded me that while removing the healthy breast wasn't really going to change my chance of recurrence, it would double my risk of complications.

    Each of us needs to do what feels best. Research, talking to people educated on the topic, and reflection will ensure you do the right thing for you. It took me a month to make my decision but once made, I have never regretted it.

    Good luck

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  • muska
    muska Member Posts: 1,195
    edited May 2018

    Emgee, you didn't provide details of your diagnosis, without more info most suggestions would be baseless. There is a famous thread on this forum about choosing between lumpectomy and mastectomy that lists dozens of factors that one might consider as part of decision process, I am sure you can find it or somebody will point you to it.

    Good luck!

    Editing to add personal experience: tiny tumor at initial assessment, no invasive cancer seen on pre-surgery scans. Very dense breasts and history of macro calcifications in both breasts. Was told the other breast was 'healthy' but decided for bilateral mastectomy anyway. I am glad i did because they found very extensive LCIS in the other 'healthy' breast (LCIS is usually not seen on imaging.) The rest of the diagnosis is below.


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  • moth
    moth Member Posts: 4,800
    edited May 2018

    It's a deeply personal decision obviously but I'm glad I went with a lumpctomy. The least invasive but still effective method made sense for me.

    I would have done a bilateral mx if my genetic testing came back positive but it didn't. A mastectomy is a much larger and more complicated surgery with more possible complications. The lumpectomy was easy peasy day surgery and I was up and about resuming normal activity within days.

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  • Emgee
    Emgee Member Posts: 15
    edited May 2018

    Thanks for your reply, Runrcrb. I wish I could give more info but I don't have more info. Does one normally get more info than this before committing to and undergoing a removal procedure of whatever kind? I have requested written biopsy and radiology findings but so far have only verbal accounts and apparently didn't know enough to ask the right questions. The surgeon today seems to advise against waiting (we have a trip overseas scheduled for late June into early July and his vacation begins mid-July) but also doesn't advise us to cancel the trip. He wants me to go with the easy-peasy in a couple of weeks and then travel or else go with a double mastectomy (or single) immediately and hope to be sufficiently recovered to travel by the end of June. This desire to move quickly seems to contradict the idea that this is a very slow growing thing. ? I am puzzled, hence asking for others' experiences.

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  • Emgee
    Emgee Member Posts: 15
    edited May 2018

    Muska, thanks for sharing your experience and referencing the other thread that may be of some help to me. And Runrcrb, I forgot to mention that your point about double the risk of complications is a very good one.

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  • Emgee
    Emgee Member Posts: 15
    edited May 2018

    Moth, thanks for your reply. Does one ordinarily get genetic testing before making this decision? Nobody on the medical team has suggested this to me.

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  • moth
    moth Member Posts: 4,800
    edited May 2018

    I had genetic testing after my lumpectomy. If it had come back positive, I would have scheduled the surgery after chemo.

    Genetic testing isn't necessary for everyone. You can read some of the criteria here. https://ww5.komen.org/BreastCancer/GeneMutationsam...

    I had it because of close family hx of both breast & ovarian ca, my age and the triple neg tumor.

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  • Georgia1
    Georgia1 Member Posts: 1,321
    edited May 2018

    Hi there Emgee. Like a couple of others who have replied I had ILC and chose lumpectomy + radiation; the odds of recurrence are identical and the recovery from surgery much, much easier. And to answer your other question: yes, you should have more information by now. At a minimum you should ask for your reports and/or the information they contain about ER status (which can predict the benefit from Tamoxifen or an AI), Ki-67 rate (which gives an indication of risk of spread/recurrence, imperfect but useful in the sort run until you have post-surgery pathology), stage and grade.

    On genetic testing, insurance usually doesn't pay for it so you'll have to push for it and possibly pay out of pocket. But it was the best $300 I ever spent. It's not necessary now (I did mine after radiation when I had my act together a bit more) but if you are truly on the fence on your surgical options it can certainly provide more data. Best of luck to you and let us know how we can help further.


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  • Emgee
    Emgee Member Posts: 15
    edited May 2018

    Thanks, Moth, for the reply and link re genetic testing. Georgia1, your reply is helpful. Based on replies here and in an ILC FB group I joined, I have requested the written biopsy and radiology reports -- but it's Friday of a holiday weekend so not counting on a really fast response. NEXT time I get diagnosed with breast cancer I will have a better idea how to handle myself! ;-)

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  • Icietla
    Icietla Member Posts: 1,265
    edited May 2018

    I am very sorry about your diagnosis.

    >>The surgeon says removing the affected breast is one thing but -- although he is willing to do it if that is my choice -- removing the other breast also will not increase my chances of being alive and well when my husband begins to need help one little bit. What do you think?<<

    I think Alive (Overall Survival) is one thing and Alive And Well (Disease-Free Survival) is another. Some Doctors use reference to big-number Overall Survival statistics (heavily weighted by breast cancer types more likely capable of early stage detection by the usual breast imaging means) to argue against breast cancer patients' mastectomy and contralateral prophylactic mastectomy choices. I am not aware of any reports of studies comparing Disease-Free Survival results as between Lumpectomy (with Radiation), Single Mastectomy, and (optional) Bilateral Mastectomy in (only) ILC cases.

    Many of us diagnosed with early stage (operable) disease will have Distant Recurrence, regardless of surgery type, regardless of any and all other treatment given.

    Local Recurrence risk is reduced but not eliminated by Mastectomy.

    http://www.breastcancer.org/treatment/surgery/mast_vs_lump

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    Sep 1, 2017 10:20AM - edited Sep 1, 2017 10:31AM by Icietla

    Another ILC-er here. By my calculations, the little-to-no-statistical-difference-in-outcomes so often used to argue against our mastectomy and CPM choices is roughly 93% weighted by IDC and DCIS cases. Somebody tell me if I am wrong about that, huh?

    --------------

    "Bilateral involvement is reported to be 20–29% in lobular carcinoma [10, 12, 16, 41, 42]. In our dataset the incidence of contralateral breast cancer in women with ILC was nearly double that in women with IDC."

    Source: https://breast-cancer-research.biomedcentral.com/articles/10.1186/bcr767

    ------------------------------------------------------------------------------------------------------------------------------------------

    It is often correctly said that the right surgery choice is the one you make for yourself.

    Do what is best for your own comfort, your own best peace of mind, your own new normal for your future. We will support you in whatever you decide.

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  • Lula73
    Lula73 Member Posts: 1,824
    edited May 2018

    Jumping off from Icietla’s post... ILC does indeed having higher risk of comtralateral development. And overall, if the risk is almost non-existent for contralateral bc, why do docs recommend intensive monitoring of the remaining breast every 6 months?

    Aside from lowering recurrence/new occurrence in opposite breast, many of us opt for bilateral mastectomy (BMX) for a whole host of reasons. 1 is lessen risk of BC in the “healthy breast”, another is not having to deal with the intensive monitoring every 6 months protocol, there’s symmetry to consider as well as type of recon/no recon.

    I chose BMX with immediate natural tissue reconstruction (called DIEP flap). I would do it again in a heartbeat. It is a very personal decision and the best advice I can give is to do your own research on your options (including recon/no recon and types of recon) and go with the choice that leaves you with a feeling of peace. Here’s a link to where I had mine done. This center is referred to as NOLA on these boards. There is a great video titled ‘I wish I’d known’ on the main page of the site. Very informative.

    www.breastcenter.com


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  • Anonymous
    Anonymous Member Posts: 1,376
    edited May 2018

    In addition to the higher risk of ILC and bilateral involvement down the road, if you've ever been told you have dense breasts (if not, please ask!) remember that means it's harder to find problems in dense breast tissue than not. Since ILC is more difficult to detect because of the way it grows, it's harder to find in scans overall, and even harder in dense breast tissue.

    Claire in AZ

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  • NotVeryBrave
    NotVeryBrave Member Posts: 1,287
    edited May 2018

    All good responses here. I would also add that talking with a MO before any plans for surgery is a good idea. Anyone diagnosed with BC of any possible stage would benefit from hearing from an expert for follow up plan of care ahead of time.

    Another consideration is the importance of the trip you are planning to take. A lumpectomy is a much easier and faster recovery, but they sometimes need to go back in if margins aren't clear. And you will need radiation to start about 4-6 weeks after the surgery. Unless you're eligible for IORT and SAVI and the like. A MX is a much longer recovery and you might not be ready to go on a big trip.


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  • Emgee
    Emgee Member Posts: 15
    edited May 2018

    Thanks for a very helpful post, Icietla! I was able to keep up with reading over the holiday weekend but had no new information until Tuesday and haven't had a minute until now to reply. I do now have the written pathology and MRI reports. The cells found are grade 1 of 3, measuring approximately 2mm in several foci. Estrogen positive 93%, Progesterone positive 21%, Her2 Negatve, score 1+, Ki-67 9%, proliferative rate low. Subsequent MRI shows an additional area deemed suspicious in the same breast; total area of abnormal enhancement 4.5 cm.

    I'm completely new to all this but that doesn't "sound" half bad compared to most of what I'm reading. Hopefully the post-operative pathology reports will not contain anything more alarming.

    My husband really wants me to go for the double, and I was already pretty unlined that way myself, so we're going to do it. Surgery is scheduled for a week from today. No reconstruction. Chances are recovery will not be rapid enough to permit traveling overseas as originally planned, but we'll wait and see.

    THANK YOU ALL for helping me understand my situation and think this through.



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  • msphil
    msphil Member Posts: 1,536
    edited June 2018

    hello I was planning our 2nd marriage when diagnosed didn't want to go into new marriage with one breast but my husband was wonderful just wanted me healthy n still here. I thought bout lumpectomy but decided on just Lmast other breast healthy wear prothesis and Praise God am this yr a 24 yr Survivor. Ms Phil idc stage2 3mo before n after Lmast got married 7wks rads and 5yrs Tamoxifen.

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