Please help me to decide what treatment plan I should choose

LoveandLightinLA

Hello all,

Please help me decide what to do. I have met with 2 different surgeons, and they have given me different suggestions on treatment plans. I do like both surgeons, but the one I prefer unfortunately isn't in network for lumpectomies(because it is an outpatient procedure) (only mx & reconstruction is covered since it is an inpatient procedure), so I would have to pay out of pocket, which is not really an option for me.

Because my tumor is 8mm and grade 1,stage 1, they both suggested lumpectomy with radiation. However, my breast MRI just came back, and they found 2 areas of concern that looked "suspicious". So now I need to do another biopsy on the other side of my right breast. Here's the dilemma:

1. Surgeon #1 said the biopsy area is too close to my implant and therefore could damage it. So she suggested that I have a biopsy done at the same time as my lumpectomy, and if the area proves to be cancerous, then I would have to do a mx.

2. Surgeon #2 said she does difficult biopsies all the time, and could "try" to just biopsy the area for me this Friday. They offered to do this in order to prevent unnecessary surgeries. While this does sound like the better option, surgeon #2 is out of network for outpatient procedures like lumpectomies. (but the biopsy would be covered in network)

What do you think I should do? Part of me wouldn't mind doing the biopsy and finding out if the area is cancerous first, and then decide if a mx is medically necessary. But is it weird to do a biopsy with one surgeon, and a lumpectomy with another surgeon? Should I just choose one surgeon at this point and go from there? Or is it considered acceptable to go back and forth between surgeons?

I just got diagnosed over a week ago, and still have much research to do. This is all very overwhelming to me, it's hard for me to think straight. I would be most grateful if one of you wise souls could give me some much needed advice.

I just quit my job a week before I was diagnosed, so money is tight at the moment. I really can't afford to pay out of pocket for my treatment plan unless I absolutely have to.

Even the genetic testing is stressing me out, as I don't think my health care covers it, and I already did it last week!

Should I just go with surgeon #1 (who is in network), and do the biopsy and lumpectomy at the same time, and risk having to do 2 surgeries if the other area is cancerous?

Or do the biopsy first, and then decide what step to take, and with which doctor?

I'm sorry if this is rambling. I hope this all makes sense to you! Thanks in advance for your help!

p.s. To be honest, as much as I want to know if the area of suspicion is cancerous, I don't know if I feel up to doing a biopsy this Friday (12/23). I would have to miss my daughter's music concert at school, and then possibly be sore and feeling weak during xmas eve and xmas. I want to be strong and happy and make xmas fun for my 6 year old! Plus I would have to wait all holiday weekend for my biopsy results!

p.p.s. Surgeon # 1 told me it is fine for me to wait 4 weeks until my genetic test results come back to decide on surgery. Surgeon #2 offered to do a lumpectomy on me this week (before my MRI results came back), and when I said no, was trying to pencil me in for early January.

Meow13

I really can't advise you but I can tell you my story. I had 2 tumors they thought were both ILC 1 cm each about 4 cm apart. My radiologist that found the cancer was on the tumor board and strongly recommended a mastectomy because of a suspicious area she saw using ultra sound. That area didn't show on the MRI. They said if I wanted a lumpectomy I would need an uncomfortable biopsy (different than the punch type I had on tumors). My surgeon talked me into a mastectomy and I scheduled a separate surgery for my DIEP.

Well the suspicious area was normal and because I had the mastectomy the pathology was very detailed showing with 95% confidence the 2 tumors were separate occurences one IDC and one ILC. No other cancer found anywhere. No radiation and DIEP was 4 months later and I was very happy with it.

I am confused you have an implant? Was that from a previous breast cancer reconstruction?

LoveandLightinLA

Hi Meow,

Thanks for sharing your story. No my implants were not from breast cancer reconstruction. I had breast augmentation in 2014.

I just got diagnosed over a week ago with breast cancer. I don't really care about the existing implants I have, more about whether I can handle having a lumpectomy and then possibly a mx soon after if they discover that the area of suspicion is cancerous. Wondering if it is easier to just do an mx and reconstruction instead.

Meow13

Well my mastectomy went smooth. I hated waiting for the DIEP. I was very lucky I heal easily. Sorry you just had surgery and 2 years later cancer but I think there are ladies here you must have had similar situations.

I will say the depression I felt after mx probably could have been avoided if I had immediate reconstruction. I didn't know they could do it. My breast surgeon and plastic surgeon were at different hospitals.

LoveandLightinLA

I'm glad your mx went well! And happy you like your reconstruction. Thank you so much for sharing.

wrenn

I feel so bad that you were put in this position. (Talk of universal health care for another day) but I wonder if you can put off the decision until after Christmas? Most of us have long waits between diagnosis and treatment and your tumour is quite small. It would be nice to not feel rushed for such a big decision.

I found my lump on June 15 and had it diagnosed July 25 and the surgery August 16

If you can't or don't want to put it off it should be ok to go with different doctors for each procedure.

More people are around during the day so you might get more help with this tomorrow. Take care.

tennischick888

First and foremost, I am sorry that you have to go through this. When I was initially diagnosed September 8th of this year, I felt everything had to be decided immediately. The wait for test results was pure torture. I too struggled between two surgeons. I had scheduled a surgery date with one but my gut was to go with the other surgeon. I was "afraid" of cancelling with the scheduled surgeon. But i realized that it's MY body and needed to do whatever I was most comfortable with. There is NOTHING wrong with using one doctor for the biopsy and then using a different surgeon for lumpectomy/MX if that's what you want to do. People get second and third opinions all the time. You go through the office staff and not the doctor when you need your pathology reports. I cancelled my scheduled appointment with the surgeon and had the office staff forward my test results to my other surgeon. There were no questions asked. I am sure this happens often.

I too had IDC and tumor was .8 cm, Grade 1, ER/PR+ HER2-. One surgeon discussed lumpectomy and radiation but also discussed dmx with reconstruction (no radiation required then). The other surgeon suggested Lumpectomy followed by radiation but was willing to do a dmx only after I told her that was how I was leaning. Chemotherapy was always an unknown until after surgery (lumpectomy or dmx) for the dreaded wait of oncotype test results.

For me, the thought of having a lumpectomy...then months of chemo (if necessary) followed by 6 weeks of radiation was daunting.The DMX with reconstruction would have a tougher recovery initially but knowing that if chemo was NOT necessary, then I would be "done" since I wouldn't need radiation. If chemo was required, then I knew I would be "done" after that and not have 6 weeks of radiation afterwards.

I am exactly 10 weeks today post dmx. I had a nipple/skin sparing dmx with tissue expanders on October 11th. My oncotype test score was low so no chemo needed. I am on tamoxifen. So far, so good. I am back to playing tennis and exercising for the past couple weeks. My exchange to implants surgery is scheduled for Jan 16th.

Btw, single mastectomy was never an option for me since my breast size was so small, there wouldn't be an implant that could "match" my other breast. I would need some sort of reconstruction on the "good" breast to match so I figured it would make sense to have dmx. I had very dense breast tissue and 3D mammo and ultrasound couldn't see my tumor. It was detected by my gynecologist in a routine exam. I was never good with self breast exams since I always had the "double screening" and no family history. Thank GOD for my amazing gynecologist. Another reason I chose the dmx was that I would never trust imaging to detect anything again for me and would just rather have one less thing to worry about. After my surgery, the pathology showed atypical lobular hyperplasia (ALH) in my other breast so I was happy that I made the decision to have dmx.

If you are not up for having a biopsy this week and want to enjoy the holidays, your daughter's concert, etc...have it in January. I ended up choosing a surgery date that was later because I didn't want to miss going to Parents Weekend for my daughter in college. In the end, those couple extra weeks did not change my diagnosis and treatment plan and I was able to have a memorable weekend with my daughter.

Best of luck with whatever you choose.

dtad

loveandlight.....IMO you need to slow down and take a deep breath. Don't let anyone rush you into anything. Also MRIs are often false positive, but they need to be sure and thus the biopsies. I would wait until after the holidays and go with surgeon #2 since you can't afford the other surgeon. Hopefully you are at a university based teaching hospital. I also think you should know the whole picture before you decide on any surgery. The genetic testing and biopsy will give you more information. We all know how overwhelming this is. Good luck and keep us posted.

gailpet

Sorry you are having a tough time deciding which way to go. I had a bit of a similar situation. A suspicious area was found in my yearly mammo in late June so I had an u/s and then had a biopsy. I was diagnosed on 7/12. They felt the area was small but wanted an MRI to double check the results. If it had just been that one area, a lumpectomy followed by radiation would have been the recommendation. I had an MRI on 7/13 and that showed another area in the same breast that was suspicious so an MRI biopsy was done on 7/26 -- so a lot of waiting in between. Since there is a history of BC in my family, I went through genetic counseling and testing during that time as well. I found out on 7/28 that the 2nd area done by MRI biopsy was fine and found out on 8/5 that my genetic testing came back ok as well. However, if either one of those tests had shown a problem, I would have done a mastectomy.

When I got my diagnosis, I was a bit gung-ho and was leaning towards a mastectomy but after looking at what that entailed and thought if my cancer had just been isolated to the one area, I would lean towards lumpectomy/radiation instead. I remember that month of waiting for results and doing more and more testing was just a terrible time for me. However, since all my testing came back ok, I went ahead with a lumpectomy and sentinel lymph node biopsy on 8/17. The lymph nodes were also clear and after another month of waiting, I got my Oncotype results back which were a 12 so I didn't need chemo either.

Most of the time, there is a bit of time that can pass before you move ahead, unless it is extremely aggressive. I do have to say, the waiting was the worst for me though. In hindsight, I'm glad I had the time to digest my diagnosis and had time to investigate my options instead of rushing into something. It was hard at the time since I just wanted that cancer gone and wanted a plan in place -- I don't handle the "gray zone" very well.

As far as going to different providers for different parts of your treatment, I think that is totally acceptable. I know a few ladies who have done all different care at different providers. Whatever works best for you. And so hard if the costs aren't covered! That doesn't help matters.

Wishing you luck in making your decision!

LoveandLightinLA

Thank you wrenn, tennischick, dtad, and gailpet so much for sharing your experiences and your wisdom with me. I really do appreciate your help so much!

I will follow your advice and breathe and take my time to make the best decisions. I think I will probably end up going with the surgeon who is in network, even though she wasn't quite as warm and caring in the room, she has been communicating with me consistently through email which is reassuring.

The other surgeon, while very warm and personable in the room, doesn't even allow direct communication with her patients. I have to communicate with her through her surgery scheduler. So I think I know who I need to go with.

Thank you so much for listening to me and helping me to clarify things. I am so grateful to all of you for helping me through this journey, step by step!