Frustrated :(

Lagriff

Story so far:

Went in for a mammogram on August 28, 2015 - did an ultrasound and a biopsy immediately after the screening. A week later got the "positive" result back and an appointment with a general surgeon set up for the 9th of September. Getting answers from the surgeon was like pulling teeth, but his nurse was amazing. What I got pieced together finally between family doctor, surgeon and nurse navigator is that I have an ILC and by touch the surgeon thinks it's probably about 2 to 3 cm. Grade 2 and that's it, nothing else to go on. My mother had breast cancer and we lost that battle, but it was a long time ago. I seem to be rushing into surgery without getting all the answers that I want though. I've read so much about radiation (the different types) and reconstruction; which I want, only to find out that while I rush head long into the surgery date for October 1, 2015 - it could be up to 3 years before I can get any type of reconstruction done. Now I'm left with the decision of a) get a lumpectomy and hope like hell that they get it all; preserve some of the breast, b) get a mastectomy on the left breast and wait for 2 to 3 years for reconstruction; not a big fan of only having one breast, scared to death that I'm going to end up getting cancer in the right breast as well and having to go through this all over again so c) getting a bi-lateral and waiting for reconstruction on both (at least I'll be even) for 2 to 3 years. Can't seem to get a hold of the nurse at the surgeons office to get a referral to see a plastic surgeon - general surgeon tells me that there is no special "skin saving" incision, yet I've read everywhere that there is... seems what I'm getting is just hack it out and then lets talk about what else happens after that is done, yet I get the feeling that I should be making some of these decisions before I get anything done?

I'm frustrated and can't seem to focus enough to get comfortable with any decision, while I understand that to the surgeon and the nurses I am one of I don't even know how many women with the same problem, to me it's huge. I constantly feel like I'm getting a pat on the head and just leave it up to others to decide how to deal with all this, I've lived with these girls on my chest for a long time and feeling judged because I want answers before I go cutting off bits and pieces of my body.

muska

Dear Lagriff, I am so sorry you are joining our club here. I am sure women on this site will give you many useful tips and advice. My first thought is, do not rush into surgery or any other treatment until you have a good enough understanding of the findings and treatment plan. I would go to a specialized breast cancer center and get all test results you have had so far reviewed and discussed with specialists that deal with breast cancer every day. Consider having surgery done by a surgical oncologist specializing in breast cancer, not general surgeon - especially if you want to have reconstruction. It is not clear why you were told you would need to wait up to three years to have reconstruction done.

Good luck and please remember it will get easier once you have a plan in place.

MusicLover

I hope that others come on to this thread and give their input but I never heard that anyone had to wait that long for reconstruction.

Skittlegirl

You may want to get a second opinion about surgery and your options. My surgeon has a lot of experience with breast cancer so was able to give me an idea of what is coming. Have you been referred to a medical oncologist? This isn't really a ticking time bomb, so taking a few more weeks to get answers won't change things. But my surgeon doesn't recommend waiting 6 months to take action either.

Italychick

that doesn't make sense. My surgeon said if I opted for mastectomy, the reconstruction process would not take very long and both she and the plastic surgeon would do my surgery, she would remove breast tissue and plastic surgeon would begin the reconstruction at the same time. I would definitely get a second opinion.

JohnSmith

If you can, get a second opinion.

Like others said above, the reconstruction process can start at surgery when the tumor is removed. It's best to visit the Reconstruction section to explore options, as well as the ILC section here.

Also, I sent you a Private message with useful ILC data.

Juliecc

Many women have immediate reconstruction at the time of their mastectomies if yoou go that route. In my case, my sureon performed the mastectomies and then my plastic surgeon stepped in to place tissue expanders. It was all in one 6 hour surgery. Over 2 or 3 months, the expanders were slowly filled with saline. Two months after that, the expanders were swapped for implants. There are many types of reconstruction to consider. Maybe there isn't a plastic surgeon available for when he wants to do the surgery?

daisylover

Hi Lagriff,

I can totally relate to your feeling of frustration. I was in a similar place way back in 2013. I tried the lumpectomy (partial mastectomy) route, requiring re-excision due to close margins. Finally, had to settle on mastectomy. At that point, I would have chosen immediate reconstruction, but plastic surgeon felt it was best to wait; since I wanted only autologous (DIEP flap) reconstruction. There was no guarantee that I would not need chemo or reconstruction at that point. They would only know the answer after taking nodes (axillary nodes) during BMX (bilateral mastectomy). I chose bilateral because I wanted balance for my back issues and I wanted peace of mind - mammograms not working on my dense breasts. (The new 3D mammograms and MRI did not actually reveal the cancer in my prophylactic breast...) It was a difficult time to make decisions regarding surgery. I knew that I did not want temporary expanders placed at time of BMX. I do not deal well with some drugs or foreign materials on/in my body... so I remain flat but am considering reconstruction. I wish the SE's of all these medications were not so significant for me... The AI's have caused many aches and pains for me (I know that not everyone experiences this!)... I do not feel inclined to add to my discomfort right now by having another surgery (In 15 months I had 4 surgeries, 3 breast and an oophorectomy).

Given all of this, I would simply say, I wish that I could have had immediate autologous reconstruction. I did not have radiation or chemo in the end; so I could have proceeded with reconstruction. I believe that I would have benefited psychologically from having had reconstruction, feeling less damaged, more whole. None of my doctors/surgeons were concerned with this aspect of my treatment and recovery. (My feeling is that many plastic surgeons and breast surgeons prefer to not have to coordinate their schedules with each other if you choose autologous reconstruction.)

I am less than 2 years out from initial surgery, and could definitely choose reconstruction at any point (even if i had had chemo and radiation). I am not sure why anyone would need to wait 3 years? I could not choose nipple sparing mastectomy for my right breast due to the cancer being close on that margin. I did have skin sparing despite requesting that it NOT be spared. I felt that if I could not immediately reconstruct, I would probably never choose reconstruction. I am still leaning toward not having reconstruction... I had my first consultation with a plastic surgeon prior to my BMX. I think that is an important step to hear your options... If you choose lumpectomy, then there is less pressing need for a PS consult. My breast surgeon was pushing reconstruction with expanders at the time of BMX surgery -- he claimed it was "protocol" at Brigham and Womens (Dana Farber) for all mastectomy patients (He is head of the breast surgery division.) I don't understand why you would not have that option?

Well, I know that it is a difficult to be in this phase. I sought second opinions from all: medical oncologist, radiation oncologist, and breast surgeon. Maybe that would help you? I wish you the best!

BarredOwl

Hi Lagriff:

I am sorry you are frustrated and rushed. You sense you need more information, and I agree. I am concerned that this surgeon is not being responsive to that need.

As others said, you do have time to better understand your surgical and reconstruction options in advance of making any decision! One of the best ways to do this is to seek a second opinion from an independent institution (more on that below). You may find you would rather be treated by the second opinion institution.

The question of whether you are a suitable candidate for a "skin-sparing" mastectomy or "nipple-sparing" mastectomy is a critical piece of information that a breast surgeon would definitely advise you about before you agreed to a mastectomy plus reconstruction option.

Both breast surgeons I met with were eager to arrange a consultation with a plastic surgeon before surgery and this is typical. What you are experiencing seems unusual. You should not be discouraged from seeking information about your options.

Also, it does not seem like you can make a fully informed decision about lumpectomy versus mastectomy plus reconstruction, without first receiving advice from a plastic surgeon about the options for reconstruction that are available to you, as well as their expert opinion on the question of immediate or delayed reconstruction. If you are not a suitable candidate for certain procedures that you would prefer, you might decide differently. You should have a chance to consult with a plastic surgeon before your breast surgery.

Many patients seek a second opinion about one or more of their (1) imaging, (2) pathology, (3) surgical and reconstruction options, (4) neoadjuvant therapy (treatment prior to surgery), and/or (5) post-surgical treatment options. I would recommend that you seek a complete review of all imaging (mammograms, ultrasound, and MRI (if any)), all associated written reports, a fresh review of the actual pathology slides (which are sent overnight to the other institution), and related written pathology reports, plus an independent recommendation regarding your surgical and reconstruction options.

Others above have suggested consulting a medical oncologist before surgery. Sometimes drug treatments (e.g., chemo) are recommended prior to surgery ("neoadjuvant" therapies). A breast surgeon could refer you to a medical oncologist. Other questions are how possible radiation or chemo may affect reconstruction.

If you'd like to learn more about the second opinion process, BC.org has a good section about second opinions. Some insurance plans may actually require a second opinion. Also check that the proposed second opinion institution and doctors are in-network.

http://www.breastcancer.org/treatment/second_opini...

Try to look for a surgical oncologist specializing in breast surgery and the treatment of patients with (or at risk of) breast cancer. Another reason to work with such a specialist is that with invasive disease, a sentinel node biopsy ("SLN" biopsy) is usually recommended. The National Comprehensive Cancer Network ("NCCN") breast cancer treatment guidelines (Version 3_2015) state:

"An experienced SLN team is mandatory for the use of SLN mapping and excision."

I think that generally a breast surgeon who specializes in the treatment of breast cancer as the vast majority of their practice would be the best choice and most likely to have a lot of experience with sentinel node biopsies.

At a hospital with a breast center, it is much easier to access the variety of professionals who may be consulted or involved in your care, including breast surgeons, radiologists, radiation oncologists, medical oncologists and plastic surgeons. Others here have recommended looking for center of excellence, such an NCI-designated Cancer Center:

http://www.cancer.gov/research/nci-role/cancer-cen...

They can explain their second opinion process to you and how to proceed.

In my case, I sought a second opinion about my imaging, pathology, and surgical recommendations at Massachusetts General Hospital. The pathology (DCIS) was confirmed, but the radiologist disagreed with the interpretation of the imaging. This ultimately led to the diagnosis of bilateral breast cancer (previously thought to be unilateral), and a change in surgical recommendation from unilateral to bilateral mastectomy.

This is a supportive place, so please do not hesitate to ask more questions until you get the answers and information you need to do what is best for you!

BarredOwl

Sjacobs146

You should request a copy of your pathology report, there is a lot of information on it and resources on this site to help you interpret it. I agree with muska, go somewhere with a dedicated breast center it'd you can

windingshores

Is your pathology report online? I got most of my info from online patient sites.