Topic: Mastectomy vs Lumpectomy with a Lobular diagnosis

Dec 1, 2015 09:20AM Lojo wrote:

Hi grandma3x - just wanted to share / clarify that a MX doesn't guarantee that you will not need radiation.

I had a MX on the cancer side because of the size / position was such that a LX wasn't feasible, but I ended up needing rads anyway because of close margins. It is certainly less likely that you'll need rads with a MX, but you can't really count that as a definite.

At this point, they do such careful positioning for rads that heart/lung damage are really very minimal.

Dec 3, 2015 10:58PM - edited Dec 3, 2015 11:03PM by Leslie13

My primary tumours were in my right breast. I only had a .4 cm tumor in the left. But I'm very pleased with my BMX results. I was on the smaller size, so I opted for a nipple sparing, straight to implant surgery. Having the full size implant hurt like hades for about 3 weeks, but was much easier than expanders. I'm a C, and someone may be able to go to a D if they had good nipple placement and larger breasts. I even have full feeling in the left breast.

Make sure you have an excellent surgeon and plastics person if you have reconstruction. You can have amazing results. I don't feel like I lost my girls because the exterior is still there. You can also get a reduction if that's what you need, and having good symmetry is easier when doing both at once. Less worry about the cancer returning too.

Another reason to have both done at once is you have one surgery and recovery. That's a big cost savings. I'd encourage you to consider it

Jan 24, 2016 08:21PM Sunnyone22 wrote:

Thanks to everyone here for their valuable insight. I'm facing the mastectomy vs lumpectomy decision right now with ILC in left breast - about 1 centimeter.. I was diagnosed about 10 days ago and since then have gotten fairly promising news. MRI is clear on both Left and Right breasts except for the one ILC lesion. ER+ is very strong (100%). Also PR+ and Her2-.

At this point, I'm inclined to go with lumpectomy and radiation.. After post-surgery biopsy report is in (tumor size and stage, lymph node involvement if any) I can always go back for a mastectomy later, or even bi MX..

Somehow, this seems like the only logical decision for me. Am I missing something? Have I not thought of something at this stage that I should consider?

Jan 25, 2016 04:38PM stellamaris wrote:

@somersher: I have had a similar experience. Tried BCS, but did not get clear margins. Lobular is challenging, given that it is difficult to estimate the size. My BS's perspective was that if the BCS was successful, I would have saved the breast (at this point the biopsy path report was guesstimating a 1..5 cm tumour). Prior to the BCS surgery, I had an MRI to try and get a better idea of the tumour size, but the MRI showed nothing. Well , u guessed it - the tumour was 4.5 cm and she didn't get clear margins (lobular is 'sneaky"). So, I did have a re-excision to clear the margins (she said there was a 50% success rate). Unfortunately, it didn't work out for me, and I will have to have a MX after all. I started my AI after the 2nd surgery, so I feel a lot better knowing that whatever is left is already being treated. I will be having an immediate reconstruction, and I was told the wait between the re-excision and the MX (9 weeks) is not oncologically significant - in other words, most of the bad stuff is out, the AIs are addressing what's left, and the MX will take care of the rest. The decisions we have to make are very tough and very unique to each of us.

Sending you healing hugs.

Jan 28, 2016 08:29PM 614 wrote:

Dear Sunnyone22:

I had a double lumpectomy and whole breast radiation at M.D. Anderson Cancer Center in Houston, TX.  I did not elect to have a mastectomy although my doctors in Florida, where I live, recommended the double mx.  My bs in Texas recommended the lx rather than the mx.  The lx made the most sense and seemed the most logical to me too.  I had a smaller lump at 11:00 and a much larger lump at 2:00.  My bs was able to remove both lumps even though they were not contiguous, and then do a breast reduction and a breast lift.  I have no residual skin issues nor any lasting effects after finishing my radiation.  I did have radiation burns at the end of my rad tx, but the burns went away and were not bad at all.  I sailed through rads and did not have any problems with rads at all.  My cousin, who just started rads this week, was amazed by how good my breasts look.  She couldn't believe how perfect my skin after rads looked and also how fantastic my breasts looked after surgery.  My breasts are absolutely phenomenal now.

I would recommend lx plus rads rather than mx to start off, if this an option for you.  If you have a lx, you can always opt to go back and have a mx.  Once you have a mx, you can't change your mind.  It is a final decision. 

I am under close surveillance - mammo/sono alternating with MRI every six months and I see my MO regularly.  I am taking Arimidex/Anastrazole.  I trust my doctors.  I am ok with the frequent testing and the testing does not cause anxiety for me.  I definitely continue to worry about the pleomorphic ILC and pleomorphic LCIS because lobular carcinoma is so hard to detect, however, I can live with the frequent testing.   Therefore, for me, the lx plus rads was the right decision.  It is a personal choice and everyone has to weigh all options for themselves to determine the best tx plan.

Good luck with your decision.

Jan 31, 2016 07:01AM 614 wrote:

Dear HawaiiMom:

I am so happy for you that you were able to make the decision that will put your mind at ease.  I agree that bmx is the best decision.  Good luck.

Feb 23, 2016 10:24PM - edited Feb 23, 2016 10:26PM by Sunnyone22

Leslie 13 and 614 and all...............

I finally find myself back on this thread for follow up. For the record, I chose LX in my case because every indication was that my tumor was fairly small and not aggressive. Turns out that was the case . Tumor was 1.1cm (.2cm smaller than MRI) Stage 1. Only one lymph node needed to be removed and it was clear. Tumor margins were clear by .5 cm. I have a lot of faith in my surgeon as she does ONLY breast cancer surgery.....all the time. I'm comfortable with my decision and, with not very dense breasts, I'm comfortable with closer scrutiny follow-up screening. Also plan to do rads AND AI therapy.

But one of the decision factors for me was my instinct. Never, during any of this diagnosis, testing, etc. did my gut tell me there would be a dark side to my results. I just had a feeling that lumpectomy was right for me. Of course, time will tell but I listened to that little voice inside me and I always will.

That said, thank you for your advice and sharing the logic behind your decisions. As we all know, this is such an individual experience and gaining insight into the thought process of others is invaluable. Ultimately, though, we forge our own path.

Feb 28, 2016 06:09PM mcshep777 wrote:

Somebody help me!!!! I am a newbie to all this and pretty overwhelmed. I can't find anything telling me what all these initials mean ... LX, MX ...and I always thought a BMX was a bicycle! I'm looking on the website but I can't find a definition page. :/ Help?

Feb 28, 2016 06:44PM mcshep777 wrote:

Thank you. It's so hard doing this. They want you to have an idea of what direction you want to go, but there are a trillion tests and waiting. It's hard to decide when you don't have all the facts yet. :(

Feb 29, 2016 11:28AM HawaiiMom wrote:

hi mcshep and warriorwannabe!

Sorry about all those acronyms, mcshep...update your profile and make it public so we can see.

Ask away about ILC...not that I am an expert but it has been my story since last July. My advice...yes it is slow growing, so you have time to weigh your options carefully. don't freak out while waiting for news. There are no wrong paths: everyone is different in this journey, so do what your heart tells you is right.

I opted initially for lumpectomy, when all we knew was there were two masses both less than 15 mm. After surgery, one turned out to be 6cm (here's that sneaky ILC) with margins too close for comfort. When i heard, i turned to my husband and told him i wanted the mx! Then i changed my mind because I wanted to keep my girls together. After going thru chemo, i decided on the bmx just for my own peace if mind. If this ILC is so sneaky and chances of recurrence are the same between lx with radiation and mx, i will go with mx because any recurrence will be right up against my skin and easier to detect. And just to be fair...and even...bmx!

Mar 2, 2016 02:40AM HawaiiMom wrote:

Wow, Peppin. Our ILC is so sneaky. I have the same reasoning for taking out my healthy breast...i don't know if anything will be detectable, even by mri. It wasn't for my right breast. I would rather not take the chance.

I am solid on the double mastectomy...it's the recon that is keeping me up. For now I am going flat. I am running out of sick leave and immediate recon will take two months. I can wait.

Mar 3, 2016 12:26AM Smurfette26 wrote:

Congrats on the clear CT gerrib.

From what I have read the outcomes for those who have lumpectomy and rads are very similar to those who have a mastectomy but for some I think mastectomy provides greater peace of mind. I had multifocal disease so mastectomy was my only option. Lobular is hard to detect and often the tumours turn out to be larger than they appear on imaging. This was certainly true in my case.

Sending positive thoughts and strength. Donna

Mar 5, 2016 11:36PM HawaiiMom wrote:

Hi Gerrib and Smurfette

My MRI showed the same two foci detected in mammo and ultrasound, one 10mm and one 15mm. The second one was in reality 6cm. Sneaky ILC.

Because of that sneakiness I decided on a double mastectomy for that peace of mind.

Mar 7, 2016 07:50PM Chloesmom wrote:

Doctor told me no difference in life expectancy (mortality) with BMX vs MX vs lumpectomy w rads. But her experi nice was a huge number of people ultimately had multiple surgeries with ILC. That's a quality of life issue. All those recoveries and screenings. Also my intuition said get rid of lefties even though MRI was negative. Had some tingling there and worried. Would have gone niur switch more mammon and MRIs then the pathology report came back not clear on left. Doctor said I'd have had th 2nd MX in 2-3 years based on what was there they hadn't seen. It's 14 months. Never regretted decision for a minute. Loving the flat life.

Mar 10, 2016 05:19PM 614 wrote:

It sounds weird to me that your doctors would make you wait one month to do a BMX, yet they will do a uni in a week.  I am not a doctor.  However, it seems to me that doing one surgery makes more sense.  If a uni can be done in a week, why can't a BMX be done?

I think that you are making the right decision.  I would do the same thing if I had your dx.  Don't second guess yourself.

Good luck and I am praying for you.