Thought I knew - now not sure. Help!

NotVeryBrave

I'm throwing this out to all of you for input. I thought that I wanted a lumpectomy, but now I feel like I have so many concerns. I will need to make a decision soon. Whatever surgery I have - it should be done by early to mid May. Here's the deal:

One known tumor at 12 o'clock in left breast that was 2.8 cm before chemo. Unable to feel same after first round of chemo! So I was thinking I'd get a lumpectomy - less invasive, less recovery, keep my breast, keep sensation. But ...

One of two suspicious axillary lymph nodes biopsied at time of breast biopsy was negative, but Radiologist considered that "discordant" and recommended repeat or surgical biopsy. The plan was for Sentinel Node biopsy at the time of the surgery. So I don't know about the lymph nodes for sure.

BS says that with the amount that she will take during a lumpectomy, the breast will be smaller and higher. This BS advises against any sort of "fixing" at the time of surgery due to need for radiation and poor aesthetics down the road. Advises future "lift" on other breast. So I could end up with surgery on both breasts and have both smaller? I'm only a B cup now.

Another BS said she could do surgery in conjunction with a PS and do fat grafting at the same time. Will that work? Even though I would need radiation?

And ... the MRI and US I had before chemo showed the following: 3x3x4 mm hypo echoic nodule or lymph node, 4x6x6 mm mildly complex cyst or hypo echoic nodule, and simple cystic structure measuring up to 8 mm - all in the other breast! With a recommendation to follow up within 6 months. At the time, I was just glad that nothing else was seen on the left side and nothing needed to be biopsied on the right side. Now I worry about anything in the right.

So I feel like I'm considering a double mastectomy - which is maybe way too much. I just really don't want to do this again! I'll have a repeat MRI next week (a little over a week after my last chemo). If I did the BMX - I'd want immediate implants, if possible. Could I do that if I don't know if I'd need radiation?

Anyone have any suggestions or experiences along any of these paths? I'm so conflicted now. It's taking up so much of my brain power. Thanks so much for reading this!

Tpralph

talked to my B's today who said they'd put in a tissue expander first

NotVeryBrave

What influenced your decision for MX? Do you know whether or not you will need radiation? Have they checked lymph nodes on you?

NotVeryBrave

Can anyone else weigh in on their history and decisions? I know that everyone is different, but many of us have the same type of concerns. I really want to be able to make an informed decision and hopefully not look back.

Hopeful82014

Not very brave - One of our members put together a very helpful list of issues/considerations for those of us debating lx. vs. mx. You'll find it about 1/2 down the page at the link, below. Look for the post by Beesie. It won't address your specific situation but may help expand your insights into your decisions. Good luck. None of these decisions are easy and there are a lot of them to make at a very difficult time.

https://community.breastcancer.org/forum/91/topics/849193?page=1#post_4828669

Lula73

I was scheduled for a lumpectomy following needle biopsies that showed pre-cancer in a scatter pattern in left breast. Showed up morning of surgery for radiologist to insert the wires to the titanium markers they place after needle biopsy. That man saved my life. He said he was not recommending surgery until MRI was done. MRI showed 9mm mass in right breast. Needle biopsy showed DCIS and IDC. I could've done lumpectomy in both breasts followed by radiation and/or chemo depending on what further pathology showed. However, since I had "something not 100% right" going on in the left breast and cancer in the right, I chose double mastectomy with immediate reconstruction using my own tissue to rebuild my breasts (no implants). The reconstruction is called a DIEP flap procedure. Not all BS or PS do this type of surgery as it is microsurgery and requires additional training.

The pros of my choice: I don't have to worry (as much) about recurrence as there is no breast tissue left, I went to sleep with breasts and woke up with breasts, I was able to keep my nipples, I have a flat tight tummy now (this is a 2 for 1 surgery as they basically give you a tummy tuck and use that tissue to build your breasts), my breasts are warm living flesh (vs implants which can feel cold even once implanted), my breasts look 100% natural and will age naturally with me, no worries about implant contractures, shifting of an implant or needing replacements down the road and I didn't have to have radiation.

The cons of my choice: Recovery is a little longer than implants, hospital stay is a little longer, I have a scar that goes from hip to hip (its placed low so undies/bikini bottom covers it perfectly and it is fading pretty quickly - give it a year and you won't hardly notice it), finding a qualified surgeon who does these procedures well (key word is WELL) at least 1 time per week who has the before and after photos to back up his claims can be challenging and may require travel (more on that below).

With lumpectomy you get to keep all the feeling in your breast but as you've already been told by your dr your breast will be smaller (may no longer have a natural shape too) and you'll likely need surgery on the other breast for symmetry. In my case, the first 'pro' listed above trumped the feeling in the breast with lumpectomy. Since I was able to have the skin and nipple sparing mastectomy I still have sensation in most of the skin of my breast/chest. I don't have sensation in my nipple but it still responds to cold and touch like I do - LOL!

I traveled to New Orleans from central NC to have my procedure done. You can find threads on this group referred to as NOLA all over this community board. The group is called Center for Restorative Breast Surgery. Breast reconstruction is all they do, day in and day out. These are the guys that not only do their own work but they're the ones that fix other doctor's work that didn't turn out well.Women have even come from overseas to have them reconstruct their breasts. I highly recommend them.

I know its a big decision to make. All I can offer you in terms of advice is to do your research, look at before and after photos for each reconstruction procedure available as well as for lumpectomy and go with the option that takes away that knot in your gut and leaves you with a feeling of peace. That does not mean you have to be happy about having one of these surgeries, but you can be at peace with it knowing its the right decision for you because it gives you peace of mind.

I hope you find this helpful. Feel free to PM me if you like with any questions. Good luck!

-Lula

reflect

Oh boy, I remember these overwhelming decisions--no "good" options right? I would want to know how things look after chemo, and get your doc's opinion. If there's something suspicious in the other breast, can they biopsy? Why check in 6 months, after one surgery, only to (possibly) need another?

I began wanting a BMX (get rid of it/them) and came to choose a lumpectomy after a second opinion at Dana Farber. They said they could get my (multifocal) tumors with wire localization, and that I had enough breast tissue to have a breast remaining, and I do. (My breasts were really big--they took 11oz!) It is higher, and I do plan to have the other reduced for symmetry, Of course, I knew I had to have rads in any case (+nodes) so that wasn't in the equation. Chemo was neoadjuvant.

In the end I decided to do the least as I can always remove more if necessary. I am comfortable with my decision. I wish you the best with whatever you choose. It is a tough place to be.

dcdrogers

This is a repost from a thread I responded to earlier:

"I was diagnoses November. Left breast IDC with at least one node involved.. Dense breasts. 6 rounds of Chemo. MRI showed 2 suspicious areas on right breast. It was decided I needed biopsy of right breast. Technician couldn't do fine needle biopsy as "I have a very busy right breast"...on to MRI guided biopsy (HORRIBLE). Anywho....after getting through that it was determined that the right breast was OK and that it was only fibrocystic changes, BUT I get the dredded letter in the mail to come back in 6 months to check for changes to the right breast. No thank you! That's exactly how things started with left breast. I'm literally waiting on the scheduler to call with my surgery date for BMX. I don't want to face years of callbacks. Been there done that."

I've met with my BS several times and had the option of going with a lumpectomy, but I'm choosing a BMX instead. I've also met with a PS once and will be meeting with her again to firm up my decision to give reconstruction a try. Initially I thought to go flat, but I thought I might miss having breast during summer season when I wear tanks a lot. I mentioned to the PS that I wanted to try to minimize the number of surgeries as much as possible. She suggested that I was a candidate for one-step reconstruction with alloderm. It's possible they will also be able to do nipple sparing surgery as well. The plan right now is to do straight to implants, above the muscle as long as my skin is in good condition. If there is an issue and the skin is to thin, she'll place in TE's which I really hope to avoid. The PS will be prepared for both going into surgery (Implant or TE's). A little fat grafting will be done to soften up the appearance of the implants later on after the initial surgery.

I have at least one node positive and will most likely need radiation. My PS knows this and seems to think that my skin will do just fine during radiation. In the even that something happens...infection, capsular contractor, etc....she'll go with the DIEP flap to build up the radiated side. I only have enough belly fat for one breast (I'm barely a B cup) so we are going to leave that on the table just in case.

I'm sure you'll make the best decision for you.

~Dee

NotVeryBrave

Thanks so much for all of your input! It's such a difficult decision. I feel like my first BS is leaning towards lumpectomy. My MO definitely prefers that - in fact, will most likely think I'm crazy if I opt for BMX. But the second BS seemed cool with either and any option. I almost wish that it wasn't up to me to decide - that someone would just say "this is how this is treated" and I'd be done with thinking about it!

I had read the post from Beesie awhile back so that was a good refresher for me. It brings up a lot of valid points. Of course - I wish that I didn't have to have surgery at all! But that's not going to happen ...

I had also looked into the center in New Orleans, but as much as I worry about some of the things with implants - I don't think I'd be ready for any of those really big surgeries that require more areas of my body. Maybe if I was one of those unlucky people who don't do well with implants down the road.

I'm meeting back with the second BS again tomorrow. I guess I need to know what they intend to do with the radiologist's recommendation to assess the lymph nodes under my arm vs the SNB only. Also - perhaps request some type of biopsy on whatever is seen in the right breast vs waiting vs taking both.

I'd rather have the least invasive, least recovery option but symmetry is important to me and so is peace of mind - as much as one can have with this insidious disease.

Magfire

I sound quite a bit like you. I have IDC and DCIS in R. breast plus scattered DCIS in l. breast found for sure in left with lumpectomies and suspicious MRI's. Surgeon pretty much recomending double mastectomy or further lumpectomy on left as wasn't sure till lumpectomy came back. I'm going for double mastectomybut so far have been told I can't go for tummy tuck donor site as has c-sections x 2. They must use back muscle and fat both side latissimus dorsi beneath scapulae. I see plastic surgeon for consult thursday. So far having fear of loosing strength and range of motion and as I just want to get rid of this breast cancer risk with as little continued intervention as possible wondering if I should have any reconstruction! I just joined this site and this is my 1st post.

Moderators

Hi Magfire-

We want to welcome you to BCO! We're glad you've found us, and hope you find these boards to be a source of support as you begin down this road. If you're concerned about reconstruction, you might find it helpful to read through our reconstruction forum, lots of great info there: https://community.breastcancer.org/forum/44.

The Mods

NotVeryBrave

I am quite literally in the middle of this decision - I'm sitting at the imaging center! They've done a bilateral 3D mammogram and a breast MRI, with and without contrast. Just finished US.

NO cancer seen in L breast! Something still seen in R breast by MRI - unable to assess with US. Recommend to follow up in 6 months with MRI again. So yay and ugh again.

I meet with the BS again this afternoon to discuss.