Mastectomy vs Lumpectomy with a Lobular diagnosis
Comments
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Thanks for your support 416. There is not enough time on his operating list to do bmx until mid April. Also he thought radiated side may take longer to heal which could interfere with any chemotherapy or rx I might need.
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gerrib,
614 is right. Listen to your heart. When given the choice after my original dx, I opted for lx. When the tumor came back 6cm, I immediately wanted the mastectomy, then changed my mind for re-excision--i wanted to keep my breasts. Yikes. I should have listened to my heart because now I am having the bmx after many sleepless nights, anxiety, prayers, discussions with friends, relatives, strangers. I could have had this surgery all over in October. Oh well. Hindsight is 20/20, right?
Sending positive, healing thoughts!
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just got the MRI results this morning & app't w/ BS this afternoon. Best case scenario! Stage IA and nothing we didn't already know about. Excellent candidate for LX; but I am still opting for mastectomy & prophylactic MX on the left side. I only want to do this once if i can help it:
- I don't have a DH or DP to help me through rounds of diagnostics and surgeries - I have a dear friend who is interrupting her life & travelling 2000 miles to help me out with the recovery phase for this sx;
- I don't need to be informed that we have go back in because the margins weren't clean (very common with ILC);
- no rads!
- no bi-annual & annual screens and call-backs and biopsies of every little irregularity that comes up for the rest of my life;
- I am in my early 60's, planning on retiring soon and want the freedom to travel;
In essence for me, it was a no-brainer. Do I need my breasts? No. Would I rather have them? Sure. But when you weigh the pros and cons, far more reasons to do the MX & BMX than not. Peace of mind is very high on my list preferred outcomes.
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Hi quaydvt,
That is great about your MRI results!! I am happy for you. This is my very first post. I was diagnosed with ILC the same day as your MRI results. I am waiting for my MRI as they said they have to wait between days 1-15 of my menstrual cycle. The waiting is yuck! I feel like I'm another world for days!
I completely understand your decision. I am wondering what I will decide but that will help be determined by the MRI. I am 43 with 2 little ones and want to be aggressive and think I would be a worrier.
Are they going to check your lymph nodes during surgery?
I am so happy again about your good MRI results. Your right, best case scenario.
Take Care and thank you for sharing!!
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Hello Kim345. Sorry you had to end up here, but very glad you found your way to the community. It's been wonderful for my morale and well-being in just the short time I've been here.
Wishing you the best on your MRI. I didn't have to wait for a menstrual cycle - way past that!. They did lose my original requisition tho' which delayed it another 10 days.
They will be checking a couple sentinel nodes, but the MRI I had was contrast and anything untoward should have lit up like a Christmas tree (even the LNs) - & it didnt!! Thank the Gods.
My decision for BMX was really based on how much & how many times do I want to go through this, and have my life turned around for the sake of having breasts - and only part of one at that. Of course they were never really that big a part of who I felt myself to be anyway. It will obviously be a harder & more lengthy recovery at this point in time than a lumpectomy (unless you add in the radiation & having to drive 3 hours each way for a week to get it, and the likelihood of having to go in at least one more time to try to get clean margins!), but the prospect of only doing this once, and avoiding the repeat screens and worry..... I couldn't come up with anything that beat that! Boobs begone, I say!!
I am lucky I only have myself to have to be concerned about - worrying about your kids is another weight on your shoulders. BMX will slow you down longer right now, but may give you more peace of mind in the future. 6 of one....
You do have some time to think about what you want. Get on the forums here and get lots of opinions and advice. But even if you opt for BMX, or MX, you still have the option of reconstruction later, if you choose. I'm not going to bother myself, but many do - either at the time of the original sx or later.
Fingers crossed for you! Let us know how it goes.
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My BS gave me 4 choices - lumpectomy and radiation, mastectomy of the affected breast, bilateral mastectomy, or lumpectomy and reduction with reduction of the healthy breast. He said chances of recurrence were the same whichever I chose. He did say if I chose mastectomy he would do a bilateral, as I am size 40G. My first thought was lumpectomy with reduction, but after a lot of thought, i went with BMX on 3/8/17. My reasoning was --
1. My mother had breast cancer and a radical mastectomy at 54, and a recurrence and another radical at 62.
2. I did the gene test, and have a mutation on BARD1, which is indicative of increased risk of breast cancer, but they don't know how much of an increase. (So not a lot of help there)
3. I'm 66, and if I had a recurrence 5-10 years down the road, I'd be that much older, and maybe have a more difficult time with the surgery.
4. I'm a worrier.
5. After a breast MRI, a bunch of false positives, and a callback for an MRI biopsy which showed nothing malignant (other than the original tumor) but some precancerous changes in the healthy breast, I wanted nothing to do with any more MRIs.
6. Least important, but significant, I have back and neck problems, and grooves in my shoulders from strapping up those 40Gs.
In the end, the only real negative with my decision was the fact that I'm an accountant, work for my husband, and it's tax season and I'm missing so much work.
Got the last two drains out Friday, and am MUCH more comfortable. Tissue expanders are weird, but not too bad so far. First fill next week.
My radiologist told me he was sure I had IDC, and did the biopsy on 12/3. Pathologist confirmed, and I found a BS. Didn't get in to see him until early January, and he told me to take my time deciding, and call him when I had. He set me up an appointment with a plastic surgeon, and the PS explained tissue expanders to me. Because of 2 caesareans with a vertical cut of the abdomen, and a subsequent hysterectomy, he said he'd have to use the lattisimus dorsi for reconstruction. I told him I'd think about it and let him know.
About a month later I went back to the PS and asked him why he needed to use the lastissimus flap, and he said it was because of my size. I told him I had considered no reconstruction and asked him why he couldn't use just implants, and he said the result would be better with the flap. If I wasn't so overweight, I'd wear a 6 or 8, so I'm going with no flap. I just wanted something, because I knew I wouldn't like prosthetics.
BMX on 3/8, and the labs came back ILC instead of IDC. That was a surprise. The MO has requested an Oncotype score, and a CT scan to rule out chemo, so more waiting for results.
Take your time deciding if the BS says there's no rush, and good luck.
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unfortunately a bmx is no guarantee the cancer won't come back. As much as I hated the side effects of AI treatment I think it did protect me from my estrogen positive ilc and idc.
I see that others don't have MRIs or mammograms after mastectomy, but I still have them on my reconstructed side. I had a false alarm mri last fall and they did a biopsy on my reconstructed side. It turned out to be ffat necrosis. My point is I still have exam anxiety even though I had a mastectomy. It is not unheard of that cancer comes back. The no radiation was a real benefit to me though.
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Meow13 is correct, a BMX is not a cure. All it can do is remove some potential threat, and as always, that surgery comes with lasting side effects, not the least being loss of sensation permanently.
I was happy to give up sensation, because I was also diagnosed with dense breasts, and that density hid b.c. through five clear mammos over five years. I didn't want to take the chance of another false negative on one more mammogram. Therefore, breasts begone.
After I found out later that ILC has a tendency to be multi-focal, I was all in with my decision. I didn't want to worry about something in my "good breast" being missed. Damn dense breasts. Damn ILC. Damn mammos.
Those of us that have BMXs don't believe it's a cure, but we do feel that we've removed potential tissue that could go bad. I think we all also realize that all breast tissue can't be removed, and that b.c. can return in the skin or the bit of breast tissue that can't be taken out.
In the end, I made my decision based on knowing myself and what I would worry about in the years to come. I knew that my abject fear about what wasn't being seen in a future mammogram, because of my previous experience described above, would eat me alive. I still worry, but at least know that I've applied every treatment offered to me to give myself the best shot at outliving b.c. and dying of something else.
Claire
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You're right, the chance of recurrence is still there, but although a bi-annual or annual mammo would no longer be on the books, BSE will be much easier to perform & detect any small irregularities - might be more likely to get me in to MRI or U/S earlier. My ILC was not really palpable as a discrete mass - it's well over 1 cm and even now it just feels a little "dense" - Not that easy to detect (by me anyway). I have slightly "lumpy" breast tissue - many years of hockey and softball beat them up pretty well and I have had 2 call-backs for biopsies that were nothing but small calcified areas. I have two current tumours - one little 4 mm BR5 satellite in addition to the 1.3 cm that got biopsied and confirmed. I think I will have less anxiety because there will be less to examine and therefore less chance of missing something. Easier to feel a little BB when it's basically sitting between skin and pectoral muscle than if it's buried in a mass of fat and fibrous tissue. Also tends recur along the incision line so a real "target" to focus on.
Nothing is 100%, but then NOTHING is 100%
But with the early stage it is in, I just believe my chances of recurrence are far less with MX than without. And if I'm going to take one, I would rather lose them both. But I won't miss the experience of radiation. I am in full agreement with you there! -
Hi Quaydvt and All,
Sorry for delay in responding. The week of initial diagnosis it seems hard to do anything. I am in the stage of realizing that "This is really happening". We also go to settlement on new house new week. Wow, timing!
Thank you for your support! I am glad I found this support group. Thank you to all for your posts. They help me a lot to know we are not alone. You are all so strong...I hope I get there. Maybe after MRI and surgery when I get all the facts of exactly what I will be fighting.
The waiting is hard..I had some anxiety before this (I think developed due to pre-menopause) and this is not helping. Every pain in my upper back and tightness of chest (signs of anxiety too) I feel is mets. Also, my other boob is now starting to have tingles (probably in my mind) but with ILC you never know! Just may have not been detected because it's so sneaky.
Anyway, I have done research and changed my diet with some major changes. I figure it is something that I can do now to begin the fight instead of just waiting for results Any other suggestions would be great....maybe exercise more?
Thanks again guys!
Love and Wishing us all the best! 👍
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Hi Kim - I know what you mean with the realization period. The first couple of weeks was constant checks, rechecks & biopsies. And everyone of them just led to another, with no real concrete results except BC. And as strong as we all sound, remember the "ducks on the pond" - everything seems calm & controlled on the surface, but underneath we're all paddling like crazy! God knows, right now I'm feeling relatively relaxed - but I finally have my diagnosis, it's good, and I have my game plan. Until Wed, I was up & down like a toilet seat, and a periodic emotional wreck. Once I knew what I was really looking at I could start making definitive plans for treatment - it means so much to feel like you have a plan of attack, so to speak, rather than just sitting waiting & "doing nothing". But I'm pretty certain that I'll start back on the emotional roller coaster as I get closer to the actual surgery.
I think making the changes you can and working on being as proactive as possible at this stage is great! Diet and exercise certainly never let anyone down and can only be positive changes when facing this challenge.
Keep the faith, we're think of you. And good luck closing on the house! Your plate runneth over!
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Hi Quaydvt,
Thanks again!!! I like the 'ducks on the pond' comparison. We will be here for you as you get closer to surgery.
After all the research of ILC, why isn't everyone getting MRIs for early detection.
Take Care and Stay positive! 👍
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people are not getting MRIs because they cost between $5-6000 just for a screening. Most women could not afford this and insurance is not on board to pay at this time for most MRI
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I chose a double mastectomy because of the high chance of recurrence in the opposite breast. I also did not want to have to worry about margins, radiation or monitoring the other breast all the time. While I realize nothing is a guarantee, including BMX, for me it was the natural choice.
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I'm not new here but it's been a long time. I found out last week my lobular breast cancer has returned after 7 years. I saw my breast surgeon and my oncologist yesterday. My oncologist is very supportive of my decision to have a double mastectomy. My tumor is extremely small about .4mm. My breast surgeon is just extremely unhappy I had a relapse. I've been on tamoxafin for 6 years. I took off most of this past year because of a TIA believed to be caused by the tamoxafin. Because of the TIA I'm not elegable for recon. It was a very long day yesterday and I'm still processing everything.
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So very sorry you have recurred Kira. Research into Lobular seems to be moving slowly forward but it is still very understudied.
Latest research seems to indicate that AI's are better than Tamoxifen for LBC.
Glad your team is supportive of your surgical decision as Lobular is so sneaky and is more likely to be bilateral.
I'm a Uni but don't feel quite ready for another surgery.
It's also more likely to recur beyond the 5 year mark.
Wishing you the very best. Hugs.
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Very sorry to hear kira! I agree with you on the BMX - that's why I opted for it. Coming up in 2 weeks. "Sneaky" - even my BS calls it sneaky! That's a clinical term I haven't found in the medical dictionary! But with the frequency of "dirty" margins requiring 2nd and 3rd LX, and increased chances of recurrence and more difficulty in actually detecting it with mammo's and US, a BMX seemed to be my best chance of having a quieter, calmer life over the next 10 years or so - I'm in my 60's now and would like to have a relatively relaxing retirement.
Wishing you the best over the next few weeks. A lot to process I'm sure.
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Bmx is not a cure, you still need to be monitored. But I guess it lessens your risk.
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Kira sorry bout recurrence. Shucks! What screening did they use to detect new growth?I was told there was none for me in 2004 when I had double mast for huge lobular with chest wall attachment and dirty margins. I am so glad I had a double cause yes my doc said it's sneaky. I agree and I feel more at ease but I'll never feel that I'm out of the woods.
Trying to eat right, manage blood sugars and exercise galore .....so far so good but it's a crapshoot.
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Yep meow. Not a cure - no one knows for certain, especially with ILC. No one thinks that you don't need to monitor. But... easier for a BSE, therefore FAR more likely to find myself than otherwise (which I can do on my schedule, regularly, easily, on the road in my RV during my retirement travels), less chance of repeated surgery right off the hop, no rads post op, no constant mammo's or US.
I don't believe I will have any more likelihood of being cured than someone with a LX or UMX, just a less hectic life, not being interrupted every 6 months for scans and call-backs for the irregularities that we KNOW will come up and scare us for another 4-6 weeks through all of the biopsies (I have had 2 small calcified areas show up (one 9 years ago, one on this particular roller coaster ride) that entailed stereotactic biopsies and both were negative. Since there is less breast tissue, there is maybe less of a chance of recurrence and probably easier to find it very early with BSE. I don't know anyone that doesn't sweat just a little bit over the few days they have to wait for the results of the annual "routine" screening mammogram.
I live alone, in a very small town, and do not have a partner or close family member nearby to be able to drop their lives to travel here & help me through more surgeries down the road. I am relatively healthy, early 60's (I consider that reasonably young) and in a much better position to go through surgery and recovery now than 5 or 10 years down the road.
I guess bottom line - It all depends on your personal circumstances & where your priorities lie. My breasts are not that important to me in the overall scheme of things. I choose to try to reduce my chances of recurrence and surgical intervention and possibly improve my chances of earlier detection down the road. For me, the trade-off is more than equitable.
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Surgery is set for may 2nd. I'm quite aware this doesn't mean I'm cured. Second time around I'm unwilling to take a chance. Not even something my breast surgeon would suggest. I've already had radiation. It's in the same breast as last time.
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Am I the only one who gets mammograms and MRIs even a biopsy on the reconstructed side? I heard others don't get mammograms and scans anymore. In a way I like knowing afterwards that no cancer was found but it is going to get the exams that is not fun.
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Hi meow. From what I've read (here and other places) it is considered unnecessary if it was a full MX with recon. LX with some recon is a different story of course since there is significant breast tissue remaining. On the site here it talks about an initial screen (mammo, MRI etc) post-op to get a base-line for future comparison if anything comes up on a BSE. Depending on the the type of implant it may not be able to be done anyway. Other than than, I haven't read anywhere that recommends it (they don't say you shouldn't tho'), but also say that it is a personal choice.
I am not getting recon so that point is moot in my case anyway.
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Quaydvt,
Hi. I wanted to wish you the best of everything for your surgery! I know everything will go smoothly. Please let us know how you are doing.
Will be thinking of you!
Kim345
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Meow13,
I had a unilateral mx (partly because I couldn't make up my mind on bmx) but part of my thinking was I wanted to get scanned on both sides.I just had an MRI and both axillae and both sides were reviewed. But the MRI is a little tough and raises my blood pressure!
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Hi 9lives70,
How are you feeling since your surgery? After surgery? How are things going? My surgery will be scheduled soon and believe I am going to have same surgery.
Hope you are feeling well!
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Besides the cost, there are a high number of false positives with MRI, which I'm my case led to an MRI biopsy, which showed nothing new. If I had dense breast tissue, I might think differently
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Yes I had a false positive on reconstruction with the MRI. My insurance isn't complaining about the cost.
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Hi - Just wanted to pop in with an update from down the road. I chose a lumpectomy back in 2008. There were many reasons, among them the reality that my tumor grew very high up on the inner left side, waaaaay closer to my collarbone than my nipple AND outside of the area that was imaged on mammograms at that time. I'd been offered the usual menu of options: lumpectomy, mastectomy or bilateral mastectomy. I live in Texas, where EVERYTHING is bigger, including the surgeries. I decided I was a "less is more" person and that I could always have more surgery if I needed it.
I've had no surgeries of any kind or anything of interest popping up on mammograms in the years since the original surgery. I still get diagnostic mammograms, which means that the radiologist looks at the images and determines whether another angle or a sonogram is needed while I'm still there. These were every six months for the first few years, and now they're yearly. Knock on wood - I've been told that the type of cancer my body whippped up tends to recur 10 - 15 years down the road, and I'm coming up on 9 years this summer, so I know that my fun could be over at any time. But so far...so good.
I am still taking Tamoxifen and will try to limp through the 10 years my doctor would like me to take it.
Less is still more for me years later.
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Kleenex, thanks for the post! Sometimes I feel a little out-of-place and anxious for having gone the lumpectomy route with ILC. So I appreciate hearing that you're still happy with your choice 9 years later!
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