Lumpectomy Lounge....let's talk!

JerseyRenee01

Ladies please help me with some advice, please!

This is my post from another forum:

After going for 2nd opinion I am torn what to do! Husband wants me to do Lumpectomy first get pathology & if that 2nd area is invasive then choose BMX.

PontiacPeggy

JerseyRenee, my vote is for the lumpectomy. Here's why. Most of us want to conserve our breast if it doesn't compromise our health. With your diagnosis, you should do well with an Lx. Don't worry about the radiation. Most of us have few, if any, problems (I had none). If the path report comes back with a different diagnosis and the surgeon wasn't able to get clear margins then perhaps you would consider a mastectomy. Molly50 here had an Lx then 2 more surgeries to get clear margins. Eventually it was decided that she needed a mastectomy. I'm sure others will chime in. But I think it is wise to do the least amount of surgery possible to achieve your goal of being cancer free.

And welcome! We're glad you're here and more than willing to help and comfort you.

HUGS!

JerseyRenee01

Thank you PontiacPegg!

I feel like I could just cry with making this choice! I ended up going to Penn yesterday for my 2nd opinion as was feeling rushed get my BMX done Dec 10 from 1st place. I was the one choosing BMX with them too. My breasts are small, size A, also dense BS #1 pointed out them being dense would be more difficult to monitor. The Penn Surgeon didnt agree forthat to be a reason not to do Lumpectomy.

I also dont know my family history at all. They did the gene test, havent received results yet. So not knowing my history has me nervous doing radiation. Does that make sense?

PontiacPeggy

JerseyRennee, I am also an A cup with very dense breasts. My BC showed up on a mammogram and ultrasound. And MRI. For my next mammogram I will be having a 3D one. Don't let anyone rush you into a decision. It's YOUR body and your breasts. Usually you can take a fair amount of time to make your decision. Just remember, you can't un-do a BMX. But you can choose what to do if you have an Lx and things turn out differently. In many cases, a lumpectomy (with radiation and tamoxifen or an AI) as a mastectomy. provides the same outcome :Your history, unless it contains significant heart issues, should make a difference on the radiation. If you haven't yet read Dr Susan Love's Breast Book, it is full of information.

For further comparisons for you, my BC was 9mm. But the amount of tissue removed was 5cm x 3cm x 2.5cm, located at the 6 o'clock position. Five lymph nodes were removed. You really can't tell looking from above that I had an lx except that my nipple is downward facing. They also found DCIS in the removed tissue. I did not have gene testing but did have an Oncotype test done to see if chemo was needed. It wasn't. As mentioned, I have dense breasts but they found the BC.

When I first saw my BS, I just assumed a mastectomy would be done but my surgeon said, no, that would not be necessary or even recommended. I think you will find few women regretting going with a lumpectomy even when a mastectomy is later needed. Are you going to have genetic testing done? Do you know your family history? Do you have reason to think breast cancer runs in the family? All considerations of course.

HUGS!

marijen

JerseyRenee, I go with what PontiacPeggy said, less is more. You can't go back, so not rushing into anything seems the better choice. And lots of people do fine with radiation. We are more likely to hear the bad stories here.

PontiacPeggy

Marijen, and the reason we tend to hear more bad "stories" here (in the rads forum or the Arimidex forum, for example), is because those ladies have reactions and they want help coping with them. Their reactions are real; the problems are real. Those of us who muddle right on through radiation and into Tamoxifen or Arimidex, don't post as often since we don't need help; we are not having bad reactions; we're just living our lives.

For radiation I had very very mild "punctation" - reddening of the hair follicles. Never hurt and hadn't even noticed it until the nurse pointed it out. I've been on Arimidex for 13 months with no issues.

Marijen said it right: Less is more.

HUGS!

JerseyRenee01

Marijen:

Well again the Penn Dr is saying no radiation if straight up DCIS. He says doesnt treat DCIS with it.

Other BS saying regardless need radiation if did Lumpectomy.

So if I do this first, who do I choose!!!??

marijen

Yes Peggy, I know, you say it better! Thanks. I hope I'll be able to report good things soon.

Molly50

Hello JerseyRennee,

I agree with Peggy that you should take your time and make the best choice for you doing the least invasive surgery you can safely do. There is a couple reason for this. First, I never knew until BC came knocking on my door that reconstruction surgery is so complicated and not always 100 % successful, especially with radiated tissue. Second, BC can recur even after a BMX. They cannot remove 100 percent of your breast tissue so while your odds may decrease you still have a chance of a new or recurrence. There has also been recent changes in the way they treat pure DCIS including doing an Oncotype DX. If you do the LX and they find invasive cancer along with the DCIS you can always opt for a BMX or do radiation. Now, on the flip side...if you are a worrier and you know that close monitoring is going to drive you crazy with worry than maybe a BMX is right for you. Please read the reconstruction forums and meet with a Plastic Surgeon before you make your final decision. One last thing, wait for your genetic testing to come back. My results came back too late to do a BMX so I ended up with a UMX and will have the prophylactic side removed during my reconstruction surgery next summer. I have a genetic mutation called Chek2 which the test results said increase my chances of a NEW BC up to 29%.

Let us know if you have any more questions. I still hang out here in the lumpy lounge even though I ended up with a MX.

JerseyRenee01

what is Armidex? That was never discussed with me.

Molly50

JerseyRennee,

As for the no rads or rads, ask to meet with the RO to discuss once you have your pathology back from surgery (if you have an LX). I had a lot of invasive cancer along with DCIS so ended up with rads with my UMX.

Molly50

Arimidix is an aromatase inhibitor given to post menopausal women with estrogen positive BC. Arimidix read this link

mustlovepoodles

Well, now I'm told that I will need ovary removal too. <le sigh> Thankfully, this is not an emergency. They can't do it in conjunction with the BMX, unfortunately, so this would mean yet another surgery. I don't even have a GYN, since my last child was born 20 years ago. I'll have to get a referral from the BS, I guess.

Foo!

PontiacPeggy

JerseyRenee, you are too young (generally) for Arimidex. You are likely not post-menopausal. I was nearly 69 when diagnosed and I was 25 years past menopause. Do listen to Molly. She has been there and give excellent advice. I haven't bee in her shoes. My path was different.

Don't be rushed!

HUGS!

JerseyRenee01

Hi Molly50:

Thank you so much for your advice! This is exactly what I needed!

I am really hoping that 2nd area is nothing! I do have a fear it recur & do worry. This has been awful for me however can say the beginning was the worst! I sat & moped on the couch but then was able to turn the cancer switch off & go about my life. Yesterday turned it back on for my 2nd opinion. Having a Christmas party Dec 12. Just going about normal things to help me deal with this.

The Penn Dr said DCIS takes 3-5 yrs to grow but we dont know how long it has been there! Ugh!

This was my 1st mammo too! DX one month before my 42nd birthday.

PontiacPeggy

Poodles, well CRAP!! That's a real pisser (excuse my French). I'd be hard pressed to come up with a GYN, too, since my youngest is 42 and I didn't use an Ob-Gyn for either boy - just my family doctor. They just keep piling onto you. I hope you can find something positive to hang onto but I'm sure it's hard. Wrapping you in loving arms!

HUGS!

JerseyRenee01

Thank you, ladies!!!!!!

{{hugs from NJ}}

PontiacPeggy

Consider yourself well hugged, Renee! We all need that.

HUGS!

JerseyRenee01

thanks, PontiacPeggy:

😘

PontiacPeggy

Renee, you're very welcome. We're here to help keep you sane or to revel in the insanity of it all, to comfort, to laugh and cry with you. But most of all to support you.

HUGS!

JerseyRenee01

PontiacPeggy: 😊

such awesome & sweet women from around the world on here!!! This truly is a great place to come to!

PontiacPeggy

Renee, yes it is. I think that's why most of us keep coming here long after our lumpectomies and other treatments. This seems to be the first place we land and we want to help others navigate this bewildering diagnosis.

HUGS!

Brutersmom

JerseyRennee, I know quite a few people from my area that will drive the 1+ hours through traffic because Penn Medicine it cutting edge. Fox Chase cancer hospital which is part of Temple and has been around for 30+ years and is well respected. MD Anderson here in PA is not well known except for their TV ads. I got me second opinion from Fox Chase. They were great. I left knowing what I should do. I had an aggressive cancer but no family history so I was comfortable with a lumpectomy. Mastectomy was not considered as first line of treatment. Radiation was easy except for the fatigue at the end. I learned a lot from this group that really helped me get through Radiation with much more ease than the RO's provided.

You need to do what is most comfortable for you. Don't let them push you. This is a very emotional time so make sure you are comfortable with the decisions you make. Get a 3rd opinion if you need to.

JerseyRenee01

BrutersMom:

I am 20 min from Penn. I saw Dr. Czerniecki.

It appears upon my research he has the knowledge, he is doing the research & the studies.

Thank you for your post & I hope you are well!

Sloan15

Hi Ladies. I finished my 30th rad treatment yesterday. Whew! fortunately, my skin held up really well. The MO wants me to take dec off and start on Tamoxifen at the end of the month. I was perimenopausal going into chemo, and well, that ended things. I just had my estradiol test, follicle stimulating hormone test and lutenizing test --all came back that I'm in menopause. Will those results change in a few months as I get further away from chemo, or are those test results pretty solid? Do you think they will still keep me put me on Tamoxifen, or will they go to AI's now? Anyone been down this road? Soooooo happy to be done. Even though I have to take the meds for 10 years, it still feels like I'm done. All those doctor appointments just made me feel like a sick person, you know?

PontiacPeggy

BrutersMom, makes a key point. YOU have to be comfortable with whatever decision you make. AND once you make, don't look back, don't second guess yourself. That's a way to drive yourself crazy.

HUGS!

JerseyRenee01

PontiacPeggy:

Good advice!!!!!

JerseyRenee01

Sloan15:

Congrats on finishing your rads!! I have no help in your other questions.

I cant even help myself! Ha!!!! 😁

Brutersmom

JerseyRenee You are fortunate to be so close to Penn. It would be about a 1.5 hour drive for me. If my cancer should ever return from everything I have heard recently they may be my first choice for a second opinion although the Dr Carlson at Fox Chase which is an hour drive was really good. I prefer him over my current MO but he know my MO and said he knew what he was doing but said I should come back any time I felt uncomfortable with the care.

PontiacPeggy

Sloan, I'm no help on whether you will go in or out of menopause since I was sooooo far beyond menopause when my BC kicked up. Glad you're done with the rads. I sure understand that it will be nice to feel "not sick." If they decide you are really in menopause, then you will likely get an AI. If they are undecided then it would be Tamoxifen. Either way you'll be taking something to help keep cancer away.

Renee, I try!

HUGS!!