Log in or Register to participate in these discussions

Bi-lateral Mastectomy

Bi-lateral Mastectomy

Posted by Dtara on May 15, 2019 4:48 pm

Hello Everyone,

I haven't wrote in awhile. I finished my 6 rounds of Chemo, the last 3 were the worst. On April 30th I had my Bi-lateral Mastectomy and 5 Sentinel lymph nodes removed. The surgery went well, I did not have reconstructive surgery as I didn't feel the need to. 

My pathology report was made available to me through a special portal that the hospital provides, (it also show's appointments). I can understand some of it but not all. Tomorrow I have an appointment to my doctor who will let me know the results. How can you tell if you still have cancer or if they got all of it? I have or had Invasive Ductal Carcinoma in both breasts, which is stated on the report but now I'm reading that there is Ductal Carcinoma in Situ? Has anyone ever had both? They also found isolated cancer cells in 2 of my Sentinel nodes. It will be another sleepless night. Scared!

Re: Bi-lateral Mastectomy

Posted by ashcon on May 15, 2019 5:42 pm

Hi Dtara
Nice to hear from you  I was wondering how you have been doing. 
I'm glad the surgery went well! And welcome to the "flat" club! 

That is so great that you are able to access your reports online (I'm feeling a little jealous!).  
I didn't get my pathology report till AFTER I met with my surgeon and, if you can believe it, I learned that he read my pathology report wrong - he told me I had invasive lobular, not invasive ductal carcinoma! 

When I had my bmx, a little DCIS was discovered along with the invasive ductal carcinoma  but given that DCIS was the "lesser" of the two carcinomas, I was told by my MO that by treating the invasive one, the 'in situ' one would be taken care of at the same time. 

Regarding the isolated cancer cells in two of the nodes, my understanding is that they determine whether those isolated cells micro, or macro, metastatsis. 

What was the clearance on the margins? (it's usually noted in mm.) 

Anxiety is understandable until you can get in front of your doctor and he/she can explain it all to you. 
Take a deep breath  .. I look at it like this: there's nothing you can do about it tonight. The results aren't going to change between now and tomorrow.  But you can equip yourself by preparing your list of questions so that you know you will leave that appointment tomorrow with ALL your questions answered  and a clear understanding of next steps, if any. 

I'll be thinking of you tomorrow. Please let us know how it goes. 

Re: Bi-lateral Mastectomy

Posted by Dtara on May 15, 2019 11:40 pm

Ashcon, thank you so much for your reply. I’m happy to be a member of the flat club. I have a question for you, how long did you have your drains in? I’m on day 16. My volume is still higher than 30ml in a 24hr time frame. I’m afraid that the doctor will want to take them out tomorrow, I’ve heard horror stories of drains being removed and fluid builds up and needs to be removed via a FNA. What was your experience with your drains, if you don’t mind me asking.

Re: Bi-lateral Mastectomy

Posted by ashcon on May 16, 2019 8:47 am

Hi Dtara

Hopefully you'll see this before you go to the doctor today.
2 of my 3 drains were removed within 7 to 10 days. The last one stayed in for about 24 days. 
It was still having an output of over 30ml when it was finally removed. (it had to be removed so that I could start radiation.) 
I don't want to alarm you, but by the time it was removed, my body's tissue had started to "attach" itself to the tube, so the nurse had to carefully and slowly pull it out, severing the attached tissue. Surprisingly, despite this, it did not hurt that much. 

My surgeon explained it to me like this: as long as the drain keeps draining off the fluid, the body keeps producing the fluid.  So it's kinda like weaning off of breastfeeding (if you've had that uncomfortable experience).  At first there is fluid build up after drain(s) are removed, but eventually your body reabsorbs the fluid.  That's what my body did. But I do hear of some women having inordinate fluid build up that requires FNA. 
For me  I was grateful to get the darned thing out of me! 

Let us know how the appt goes today! 

Re: Bi-lateral Mastectomy

Posted by Lauren55 on May 16, 2019 12:40 pm

@dtara Hi, I had my bmx in June 2017.  I chose expanders.  My drains were like ashcon‍ 's mostly out in a couple weeks.  We did however leave one in for about 3 weeks.  They were amazingly easy to remove and no pain.  I was surprised how long they were.  My Oncologist did not want to remove them so I had to go to my plastic surgeon to get them removed.  I guess they don't want to step on each other's toes.  The results are very unclear until you have someone interpret them.  One thing I found through this whole journey is it taught me how to trust other people.  I had to trust the doctors knew what they were doing.  My life is in their hands.

Take a deep breath and know you are strong and now healthy.  Trust in your heart that they got all the nasty cancer.


Re: Bi-lateral Mastectomy

Posted by ashcon on May 17, 2019 4:49 pm

Hi Dtara‍ 

Just checking in. How did it go at doctor's yesterday?

Ann (ashcon)

Re: Bi-lateral Mastectomy

Posted by Dtara on May 19, 2019 3:43 pm

Hi Ashcon,

Well, it was a frustrating meeting with my surgeon. On one side  I'm cancer free in my left side but he could not give me a straight up answer to my right side (which was worse/very large tumor. I do also have 2 sentinal nodes that have isolated cancer cells. I meet with him again in three weeks, he wants to discuss my case with some of his fellow surgeons and decide on whether I should have all lymph nodes removed on my right side or hope that the radiation I will be having will take care of those cancer cells. 

I asked him three times if I was clear for cancer in my right breast, the last time, he said, yes. I just read the final clinic note( Princess Margerate Cancer Center has a patient profile that you can sign on and read your results and communication notes from doctors). It says that I had a partial response with 2.2 mm of residual invasive ductal carcinoma. What I gather from reading this is that I still have some cancer in my right breast.

All I want is some straight answers. I have no idea what to do next. Do I call his office? Do I get a second opinion, or do I wait three weeks to get another answer?

Re: Bi-lateral Mastectomy

Posted by ashcon on May 20, 2019 8:51 am

Hi Dtara
That does sound frustrating.
I'm not a doctor, but if your report says "partial response with 2.2 mm of residual invasive ductal carcinoma" then in my humble opinion that is not NED ("no evidence of disease").

You say your surgeon indicated that he wants to discuss your case with other surgeons. I'm curious.... Will he include other oncology specialists in this discussion, like medical oncologists and radiation oncologists? 
Each of these individuals are specialists in their field but collectively they are your team and are not supposed to "guess" at what the other guys will take care of (eg. "hope that radiation will take care of those remaining cells"). 
Something tells me that if there is residual IDC then both the medical oncologist and radiation oncologist need to chime in. 

Perhaps, for your peace of mind, it would be good to call your surgeon and ask him to confirm who will be reviewing your case as you have concerns that this "residual" cancer is systemic. 

I can't remember if I told you, I was in a similar boat as you with "numerous" additional lymph nodes found to be positive AFTER my sentinel node biopsy and AFTER I was 2 cycles into chemo. 
They ended up removing 17 more lymph nodes after my chemo regime was done, and all came back negative. 
I suffer from a minor case of Lymphedema now, but that is worth the price, for me, to hear those words "no evidence of disease".

Your case is a little different in that there are still signs of cancer even after your full regime of chemo, so you have every right to find out what options are available to you so that you can make an informed decision. 

Don't be discouraged, and ask all the questions you need to be comfortable and empowered! 

Re: Bi-lateral Mastectomy

Posted by Dtara on May 23, 2019 5:16 pm

Hi Ashcon,

Thank you for answering my email. 

I did end up leaving a message for my surgeon. His secretary called me back, she spoke to my surgeon and he said that there is no cancer left in the right breast. He said he was quoting the pathology report. I'm going with my gut and am not convinced. 
I did get a call today from my radiologist and I go for an assessment on June 10th. My radiologist is at another cancer center, closer to home. 
My surgeon said that when there is "difficult" cases, a group of surgeons will have a meeting to discuss these cases and plan a course of action. I don't see why these surgeons don't have these meetings before they see their patients. 
I would just like them to start the radiation and hope it gets the rest of the cancer.
I'm sorry to hear that you had to have so many lymph nodes removed, may I ask how long it took to recover from that and how many drains did you have?


Re: Bi-lateral Mastectomy

Posted by ashcon on May 24, 2019 9:23 am

Hi Dawn Dtara

It's always a good plan to go with your gut! Even if it is only to get 100% confirmation that there are no concerns or issues, and your gut can then rest easy!

To answer your questions, I had 3 drains.  Depending on your definition of "recovery",  6 weeks after the bilateral mastectomy and lymph node removal, I was recovered enough to start 5 weeks of radiation.
Was I 100% recovered? No way.
The radiation knocked the wind out of my sails again, but I am proud to say I was in the water, paddling in a dragon boat (for the first time in my life!) 8 weeks after radiation was done. 
I do not have the same energy and stamina as my old pre-cancer self, and I probably never will.  I have to do manual lymph massage every day for about 10mins in the morning, and I wear a compression sleeve every day to keep the lymphedema under control.
These things are minor, though, in the grand scheme of things: I am still on this side of the turf, and I look forward to many more days with my daughters - 2 things I was not so sure of two years ago! 

Take a copy of your report with you when you see your RO on Jun 10th. 
Don't hesitate to say that your surgeon indicated the right side was clear, but you are not convinced, and you'd like his/her input on those results. 

Are all your drains out now? 

ps:  to ensure someone sees that you responded to them, you can tag them by typing the "@" symbol before the first 3-4 letters of their username, and simply select their name from the list of usernames that appears.