Topic: Mastectomy vs Lumpectomy with a Lobular diagnosis

Jan 28, 2010 05:42PM Hattie wrote:

I had a lump, re-ex for better margins, and had ILC as well as IDC.  I left the surgery at that, with drs. ok.  would have taken it all, but several docs said it was enough.  (also had chemo and rads.  chemo due to size).  my "good" breast is still "good", 5 years out, and the other was small to begin with and now kind of funky, but still functions.  think about what will make you most comfortable, and do that.  you really do have some time to figure it out.

take care,

--hattie 

Jan 28, 2010 06:39PM awb wrote:

my mom had ILC many years ago (negative nodes)--had a lumpectomy, radiation and tamoxifen and is now a survivor of over 23 years and still going very well at 80 years old.

anne

Jan 28, 2010 07:55PM - edited Jan 28, 2010 07:57PM by wallycat

Each of us comes with baggage/personalities that vary, so only you know yourself and what kind of worrier you are.

I have friends who opted for lumpectomy and they are at peace with the decision.

I opted for bilateral mx because I am a worrier.  I did not want 6 month follow-ups for life.  I did not want radiation.  My doctors (three of them) said I should have the lumpectomy and rads and tamoxifen but I needed peace of mind.  The surgery gave me as close to peace of mind as someone being told they had cancer can.

Editing to add:  My healthy breast was indeed healthy once removed.  I did not have a multifocal tumor.  I do not regret my decision.

Best to you with your decision.

Jan 28, 2010 08:22PM Gitane wrote:

I had a mast on the left because of the tumors being so spread out.  I had a prophy mast on the right for peace of mind, turns out lots of precancerous stuff there, so I'm happy with my decision. Expander/Saline implant reconstruction.  No rads.  I feel good about my decisions.

Jan 29, 2010 04:39PM rreynolds1 wrote:

I had an MRI which showed the cancer to be isolated to one location in my right breast.  It was 1.8 cmm and my surgeon felt a partial mastectomy was appropriate.  It was surgery that left my breast in tact but was slightly smaller than my left breast.  I chose that surgery based on the results of my MRI and the advice of my surgeon.  She said the results would be the same if I had a mastectomy or partial mastectomy with radiation.  I would have had any type of surgery which gave me the best shot of living a long life.  They are only breasts and can be reconstructed. 

Good luck with your decision.

Roseann

Jan 29, 2010 05:50PM Kleenex wrote:

Somersher - My profile goes into my experience with this "pick your surgery" decision, if you want to read it. I agree with statements above: everyone comes with their own baggage and paradigms. I'm a "less is more" person, and not a huge worrier, so I am fine with my lumpectomy and the need to have follow-up scans every 6 months.

Karen may have not had good margins even with her bilateral, or the issue may have been her nodes - you can't always skip radiation by having a mastectomy or two. Depending on where the tumor was located and if nodes were involved, you can end up needing radiation even with bigger surgery. My tumor was located in such a way that radiation was almost guaranteed even with a mastectomy - great big margins weren't going to be possible.

You can always opt to have more surgery, after you see how you recover and how you feel. You can NOT put things removed back on later if you change your mind or have problems with the reconstruction process.

If I ever was faced with multiple tumors or a large one where mastectomy was indicated, I'd likely do a bilateral, mostly becaue if there was a LOT of cancer found in one breast, I'd be VERY worried about the other one. With one small, slow-growing tumor up in the corner of one breast and (as far as we know) nothing else in either breast, I'm good with my little divot 18 months later.

I found it very helpful to read Dr. Susan Love's Breast Book. When you make the decision that is the right one for you, you'll know. You will feel at peace with it.

Good luck to you! This is one of the worst parts that you're dealing with now.

Coleen

Jan 31, 2010 04:53AM Snowbird wrote:

Coulda had a lumpectomy, but chose Mx hoping to avoid radiation. I was lucky. Clear nodes, mission accomplished...  no radiation! I read on these boards that it (rads) increases your risk for lung cancer 10 years out and that was confirmed by the radiation oncologist I was forced to consult with before my BS would do the Mx. My onc agreed, saying we have a better chance of curing BC than LC, and my primary said I'd have a better cosmetic result after Mx & recon than after a lumpectomy, so off it came, followed a year later by the other and DIEP recon for both. I'm happy with my decisions, and DIEP results and recovery was better for not having had rads. FWIW, and good luck with your decisions...  they're very personal and what was right for me may not be for you.

Feb 5, 2010 05:39PM suzieq60 wrote:

I had a lumpectomy, not knowing at the time that it was lobular. The pathology came back a being grade 3 pleomorphic HER2+ which started me worrying. Also extensive classic LCIS was found and it did not say the margins were clear of that. I have now seen another breast surgeon and talked to my oncologist about the LCIS and have been assured that LCIS is not the same as DCIS in that it is not cancer, but abnormal cells that indicate you are at a high risk of developing cancer. Well I've already had that bit. The hormone treatment will act on those cells and help prevent a recurrence.

I thought I should now have a mastectomy, but the bs said that I just bear close watching. She seemed happy with my treatment so far. I was also worried about the other breast and she said we can do an MRI in October after the treatment is over etc.

If it does come back, well we can deal with that when the time comes. As others have said , why not start small if you can.

Apr 5, 2010 05:48PM Pt0121 wrote:

For what its worth,  I was suppose to have a lump. but fell sick for a couple of weeks.  That posponed the surgery.  I then saw another surgeon who suggested i have the masectomy instead.  The ultrasound showed 1.9 cm.  and the mri showed 5 cm.  He told me if it was as big as the mri appeared it would look cosmetically horrible.  Well anyway all things happen for a reason.  I decided to do the masec.  and in the process found out it was attached to my chest wall.  If i had done just the lumpectomy they may not have found the chest wall part. 

Dec 27, 2010 01:38PM suzieq60 wrote:

Hi Anne - thanks for asking how I'm going. Well I did end up having an MRI in October as they found something in my other breast when they did the mammogram. It looks like it was missed last year as we can see it on my last year's mammo, but they didn't report it.  The MRI showed the original breast is fine but it found 3 spots in the right breast. One turned out to be IDC grade 2 - clear nodes. I've had all 3 spots removed by lumpectomy - still determined to avoid mastectomies. The other spots were ADH. I'm to start radiation in January. Of course, if there is a next time I won't have a choice. This time I was adamant to go the conservative route (even though my new surgeon wanted me to have the breast off) as I want to give the chemo/herceptin/arimidex etc a chance to work. This new one probably wouldn't have repsonded to chemo as lower grade cancers don't - it may have kept it in check however. At least it wasn't HER2 again and was only 5.8mm.

I should have been referred for an MRI last year. One diagnosis (especially of lobular cancer) should be enough to have an MRI prior to surgery. In a way I'm glad it wasn't found then as you can imagine they would have probably urged me to have a BMX given cancer on both breasts. Then again, all of this screening, surgery etc all over again has been very stressful.

I will now have alternate Mammo/ultasound and MRI every 6 months.

Regarding your own situation - my new surgeon was not the least worried about the LCIS being in the margins of the original lumpectomy. And that breast is clear of cancer still.

It would be hard after what you've already gone through to go back for more surgery. The one bad thing about the MRI is that it did show 2 non cancers and I've had them removed owing to the fact the first one was cancer - they were being cautious. I do think it's worthwhile having one though, if you can afford it, as there are no refunds unless you are under 50 and BRCA positive.

Sue

Dec 28, 2010 05:18AM suzieq60 wrote:

Anne - check out the Aussie sisters thread on the chemotherapy page. Someone started it today and we're all getting together there.

My onc and surgeon both said they weren't worried about the LCIS in the margins as it is not cancer - just an indication that you are at higher risk. It is often found only when an invasive cancer shows up. You can have LCIS and never get an invasive cancer.

Sue

Jan 21, 2011 09:45PM momof4kids wrote:

I have just been diagnosed after a mammo, ultrasound, core biopsy, and HD MRI with a 2.5cm, stage 1, ILC in my left breast. 3 years ago almost to the month, I was diagnosed with DCIS stage 0 in my right breast.  The DCIS was discovered after mammo, ultrasound & confirmed with an MRI and core biopsy. The DCIS was treated with a  lumpectomy (clear margins beyond what is suggested), and I was treated with radiation. Took tomix. for  4 months. The side effects were not good so I stopped. I am 45 years old.

My last mammo/unltrasound was 8 months ago and everything was clear. This recent one (Jan 3rd) was when a questionable area was found by ultrasound. It has been a whirlwind with tests and it is making me very scared. I met with a genetics counsler and have had my genetic test submitted for BRCA. Results come back next week, the Dr. somehow has arranged to rush the results when it normally takes 3 weeks. I just found out both grandmothers ( all extended family in Europe) died from ovarian cancer and one of them had breast cancer also. Aunts on one side died of Ovarian cancer. A Cousin died of breast and another cousin had breast cancer and opted for a Mast.  My Dr. has been great and it seems he is aggressive in confirming diagnosis with as much testing as possible and takes beyond recommended margins to confirm. 

I am facing the decision to do a bi-lat mast. The Dr. suggested but was clear it was a decision entriely up to me but because of the DCIS in one breast and now this showing up within 3 years in the other breast as a new cancer and knowing the statistics of ILC appearing in the other breast, it was his suggestion. I am really scared about my future and the possibility of cancer reoccuring. There was no mention of chemo or radiation if I opt for mast. but that will be covered in my upcoming appt. If I do lumpectomy, I will follow up with radiation (new radiation type, go 2x a day for 5 days) and continous monitoring. Either decision the Dr. has said he will taking lymph nodes as well for testing.

I'm sure if the BRCA comes back positive, it's a no brainer, double mast and possible hysterectomy. I am also terrified of how I will look after a mast. I do plan on reconstruction but the results of that are sometimes in question. I sound so vain placing my appearance before my life but lets face it, I'm in my mid 40's, I'm not posing for any Sports Illustrated swim suit issues anytime soon however my breasts were really the one thing that held up over the years and still made me feel sexy with my husband and now to have them gone as well as the sensation, makes me 2nd guess what I should do if the BRCA comes back negative. Simply put, I am scared either way. 

Sep 8, 2013 03:31PM Kleenex wrote:

ASunnyJ - I haven't been on here in forever, but I would still post the exact same answer I posted in January of 2010, above. I am still happy to have had just the lumpectomy and radiation, and am still taking Tamoxifen.

If you are trying to avoid radiation, make sure that the surgery will actually allow you to do that - my tumor was located in a place where good margins would've been impossible, and so I would've had radiation no matter what surgery I would have selected.

There's a tendency to freak out and want the breasts gone - in some cases, this may, as your doctor said, help with your piece of mind; but notice that he didn't say it would most definitely eliminate your chance of recurrence. Bigger surgery would reduce your risk of a new lump in breast tissue because there would be less breast tissue, but lumps in breasts are not the main problem. Studies have shown that long term survival rates are the same for lumpectomy with radiation OR mastectomy. I chose the lumpectomy because even though radiation wasn't fun, it was time-tested and seemed like the lesser pain in the butt long term. I would choose it again today.

If you haven't already, take a look at Dr. Susan Love's Breast Book. She does an excellent job of helping weigh the options. Your location isn't listed - I'm in Texas, which is in a part of the country where "more is more," and women with small tumors often opt for bilateral mastectomies with reconstruction. On the East and West coast, where new medical technologies tend to emerge, they do breast conservation - lumpectomy - when they can.

Sep 12, 2013 08:15AM - edited Apr 16, 2014 11:56AM by Moderators

Hi everyone! In my first consult, my surgeon laid out two options - preoperative hormonal therapy, followed by lumpectomy and radiation. Or masctetomy with or w/o immediate reconstruction. I had an Oncotype test done first, which predicts your rate of recurrence - if high score, I'd be treated more aggressively with chemo, if low score, I'd be treated with hormonal therapy. My gut reaction was to just have the masctemtomy. It was very difficult waiting for those test results!! Fortunately I scored low (10/100) so no chemo for me. After discussing it with my husband and going back and forth for days, I finally decided to go with breast conservation. The surgery is less invasive and the survival rates are the same.

Oh, I should also mention I had BRCA gene testing done - which was negative.

All along the Dr's said that I would do well on hormonal therapy being ER and PR postive HER-2 negative. The nurse said sometimes the tumor shrinks completely. I didn't really believe her, but I liked that with this approach, I'd be treating my cancer immediately and if nothing else, it would be stopped from growing further. With a mastectomy, I worried that the surgery is so invasive. I was told that for best results, reconstruction should be done right away. So even though they'd take the breast, while I was healing from surgery for 3 months and they were in there doing all these invasive things like fillers, there would be little cells making their way through my body undetected. The whole process scared me. As you may know, ILC has a higher chance of spreading to other areas of the body. 

Another consideration is that my tumor is grade 2 and slow growing. Since I had the option, and some women, don't -- I decided to try the lumpectomy. They were right about it responding well! In just one month, my tumor shrank by 50%! I can barely feel my tumor anymore where before it was this HUGE mass. I worry about the upcoming surgery, of course, and still wonder if I've made the right decision. I worry if he'll be able to get clean margins or find lymh node involvement. On the other hand, there may be no tumor left! If so, I'd still have to follow the plan for surgery and radiation, followed by 5 years of Arimidex. BUt so far, so good ! 

Dec 1, 2015 05:35AM grandma3X wrote:

Hi everyone- I noticed that no one has posted here for a while, but I am now having to make this decision: lumpectomy with rads vs mastectomy. I am a B cup and have 2 small spots in the URQ of my last breast. One confirmed ILC and I'll get the path results on the other one today. MRI shows nothing in my right breast. The surgeon thinks she can get both spots with a lumpectomy and I met with the RO yesterday who seemed to think a lumpectomy is the best choice. However, I am not sure I want to live with the increased risk of a recurrence or the risks of lung and heart damage from rads. I'm also not sure how much I would be disfigured. Today I meet with a PS. My question is about getting a BMX. I'm thinking of having an MX of the chancery side with a TE, then when they do the exchange, have a prophylactic MX of the good side with immediate reconstruction. My reasoning is that I only want to deal with 1 MX at a time. Has anyone done this? How did you make out? If you had a chance to do it over again, would you go the same route? Thanks to all of you for posting your experience! The discussion boards here are the only thing that has kept me sane over the last 3 weeks since my dx.