Bilateral Breast Cancer

Paxton29

Would they do Oncotype testing before the surgical pathology report? I don't know. I didn't bother with the Oncotype because my MO felt, and I agreed, that at my age there wasn't really a good reason to be looking for an excuse to avoid chemo. Had I been in my 60s or 70s her advice would have been different. But, with a high ki67 (25) on the left I have a feeling I'd have gotten an intermediate score at best. Maybe not. She was willing to order it but I'm more afraid of not doing everything I can than I am of chemo. But we are all so different

woodstock99

My surgeon has not talked to me about any type of scoring. How do I know whether I should have certain testing done or not? When I was initially diagnosed with only DCIS and a lumpectomy and rads were planned and I asked about oncotype test she told me that I could be in a study if I wanted the test but if score was low they would not give me rads and inferred I could not have this done on my own. My BS is associated with a teaching hospital and I am starting to get very frustrated by what seems to be increasingly rigid protocols.

Paxton29

I apologize if I overlooked it, but have you seen an oncologist yet? While it is not required, I think, I wanted to see an oncologist before surgery. She gave me her thoughts about my best case/worst case scenario. She was sure I'd need chemo so I had a port implanted; now that I know I will only need four rounds total that probably wasn't necessary. But, she and I had many fears relieved with the surgical path report, even though the right breast did turn out IDC (Stage I). She had been very worried I had epidermal involvement, but I didn't. That helped a lot, as did the clean lymph node on the more aggressive left side.

I get your frustration that it's scary not knowing what tests you maybe could/should be having. Nobody discussed Oncotype with me that I recall until after surgery. The surgical path report is very useful information. My right side didn't appear as IDC inbiopsy, for example. I just feel like your oncologist will be the source for decision-making about chemo, rads, additional testing, etc. But I'm interested in others' experiences.

woodstock99

my bs only referred me to mo for aromastase inhibitor therapy and I am scheduled to see the mo on 1/20 the same day I see the bs for my one week post surgery follow-up. I asked and was told mo would have pathology for this spot so we have meaningful first meeting.

I am for the most info and getting down to most micro level but it seems bs has her ways and not flexible.

BarredOwl

Hi:

In some cases, we are comparing apples and oranges. A person receiving a mastectomy is not a candidate for the Oncotype test for DCIS [Edit: in the mastectomy breast].

In patients with pure DCIS, the Oncotype test for DCIS is used to aid in decision-making about radiation therapy in patients treated with breast conserving therapy. Chemotherapy is never administered to patients with pure DCIS alone (and no invasive disease).

Because Jazzy had lumpectomies in both breasts, and one breast had pure DCIS, she was a candidate for the Oncotype test for DCIS in that breast to aid in decision-making about radiation on that side. I would expect that the test for DCIS would only have been performed on the side with pure DCIS. (On the other side, where invasive disease was found, radiation would be indicated under consensus treatment guidelines and the DCIS test would not be appropriate as explained below.)

This is my understanding as a layperson. The Oncotype test for DCIS is not offered to patients with invasive cancer in the same breast. To the extent that the DCIS test has been assessed for its ability to do its job, such testing has been in patients with pure DCIS. See for example:

http://link.springer.com/article/10.1007/s10549-01...

In some DCIS cases, it may be appropriate to skip radiation therapy. In contrast, with limited exceptions, the NCCN guidelines provide for radiation therapy with all invasive disease treated by breast conserving surgery, even if node negative. This is why the DCIS test is not offered to patients with invasive disease in the same breast.

For those with pure DCIS (in one breast) and receiving lumpectomy, the DCIS test generates individualized estimates of 10-year risk of any local recurrence (DCIS or invasive) and invasive local recurrence following treatment by breast conserving surgery alone.

The eligibility requirements for the test for DCIS and the test for invasive cancer are not the same. Regarding Oncotype for DCIS, the eligibility requirements are described here (my [edit] in brackets):

http://breast-cancer.oncotypedx.com/en-US/Professi...

• For women with ductal carcinoma in situ treated by local excision [also known as breast conserving therapy or lumpectomy], with or without tamoxifen.

The above is probably a broader statement than what occurs in practice in the clinic at this time, due to the characteristics of the patient populations in which the DCIS test was evaluated (selected DCIS patients). In addition, the test for DCIS is still not included in the 1.2016 version of the NCCN guidelines for Breast Cancer.

The Oncotype test for DCIS is performed on surgical samples, after surgical pathology establishes pure DCIS in a breast treated with lumpectomy. This is because it has been studied only in patients with pure DCIS. Even then, it may not be recommended:

• This may reflect that the test is not included in consensus guidelines for DCIS.
• In some cases of pure DCIS, the test may not be seen as sufficiently reliable if the surgical pathology differs in significant ways from the patient populations in which the test has been studied.
• In some cases of pure DCIS, certain pathological findings may weigh strongly in favor of radiation. In this regard, the test for DCIS does not make a recommendation about radiation. It is not a stand-alone test. It is used to predict the risk of recurrence without radiation, and is used in conjunction with all other relevant information to reach a decision about risk/benefit. In some cases, such other info may easily dominate the calculus (making the test of no added value).

The above is for information only. I am a layperson, so anyone interested in the Oncotype test for DCIS should not hesitate to ask their medical oncologist for current professional advice regarding eligibility and the potential utility of the test in view of their particular presentation and current clinical evidence.

BarredOwl

[Edit: see first paragraph edit; this point was made in the discussion below, and does not change the import of the original post.]

BarredOwl

Balthus:

From the surgery threads, you are scheduled for BMX + SNB.

As noted above, the Oncotype test for DCIS is only done in patients receiving breast conserving therapy (lumpectomy) to help decide about radiation, so that test is not relevant for you due to bilateral mastectomy.

Eligibility for the Oncotype type for invasive disease, which aids in decision-making about chemotherapy, is determined after surgery and axillary staging (e.g., sentinel node biopsy), when the full pathology is available, because the histology (e.g., ductal), ER and/or PR status (one must be positive) and HER2 status (must be negative), and node status must be known to determine eligibility. Treatment guidelines address when the test is an "option", but do not mandate the test. You can discuss it with the MO in due course. The waiting for the surgical results is hard.

As always, confirm with your providers.

BarredOwl

---

Age 52 at diagnosis - Bilateral breast cancer - Stage IA IDC - BRCA negative;

Bilateral mastectomy and SNB without reconstruction 9/2013

Dx Right: ER+PR+ DCIS (5+ cm) with IDC (1.5 mm) and micro-invasion < 1 mm; Grade 2 (IDC); 0/4 nodes.

Dx Left: ER+PR+ DCIS (5+ cm); Grade 2 (majority) and grade 3; isolated tumor cells in 1/1 nodes (pN0i+(sn)).

Paxton29

Very thorough and useful breakdown. I knew almost next to nothing about cancer and wish I could have kept it that way, but that's not the hand I or anyone here got dealt. So much to learn in a short amount of time, though it doesn't feel short when you're waiting on those test results

BarredOwl

Hi Paxton:

I remember also knowing next to nothing, and scrambling to try and figure out the pathology and recommended treatment plan. My posts often address things I worried about (before or after treatment). I learned a lot from other members, and used the search engine on this site or in google, which can pick up posts. Of course, not everything is relevant or indicated for everyone; I remember that I'd read on the boards about a person getting some test or treatment, get a sick feeling, and wonder "should I be having/have had that?" This triggered mad searching for the relevant criteria and/or a new question for my doctors. Other times, I was reassured about my treatment plan or decisions from the excellent posts from Beesie and others.

BarredOwl

Paxton29

Exactly. I think, her diagnosis seems similar, why aren't we doing the same things ... but it helps to remember there are so many differences from person to person.

One other topic I've been wondering about is to what extent body weight and breast size factors in to treatment, as it seems to have done with me (radiation thanks to dirty margin on right--and very narrow clean one on the left--unusual since usually mastectomies don't have this issue but I had neither large breasts nor much weight). I see mention of excess weight as a risk factor but not whether, once cancer is there, being thin has any effect on recommended treatment. I am assuming researchers don't see weight as important one way or the other but I try not to Google too much so I don't get scared! Basically I want positive news only, I guess. For all of us.

woodstock99

Thanks all for clarifying for me about Oncotype testing.

ksusan

Thanks, BarredOwl.

froggie

Thank god for this site.

I was diagnosed with IDC on the right side in early Dec. It was 0.5x0.5x0.4 cm on the mammogram and ultrasound. I had both 2D and 3D mammogram and it showed on the 3D one but not the 2D one. Core biopsy came back as IDC, well differentiated with mucinous features. It is ER/PR strongly+, HER/neu-. I saw the surgeon and he is recommending lumpectomy with rads and AI. He said he is expecting the SN to be neg but who knows at this point.

He ordered a MRI before surgery and another mass showed up in the left breast that was not detected by either 2D or 3D mammogram. Right now all I know is that it is IDC and well differentiated. The receptor status pathology isn't back yet.

Rads on the right side and putting down scar tissue in the lung when I will have a healthy lung on the left side, didn't seem so bad. Having rads on both sides and scarring both lungs and the heart doesn't sound so great so I am no longer comfortable with that game plan.

The navigator is out of town and she is my link to the medical team. I left a message that I need a plastic surgeon consult as well as a oncology radiologist consult. I expect her to flap her gums about a radiologist consult as they do not do that until after surgery but considering the circumstances, I don't feel that I have enough information to make a good decision. I also need to know where in the breast these masses are and how close they are too the chest wall as that will affect the field and the spill over into the chest wall.

I have fibromyalgia with several trigger/tenderpoints in my left chest wall so that is also a concern. I am a scientist by trade and know how to read the literature and assess studies and the statistics in them. I ask a lot of questions and they do not seem pleased with that. I guess it is easier to bend patients to their will if they don't have those skill sets.

The stats on damage to heart tissue in some of the literature is staggering and I think I have a right to more info before making such a decision. Sloan Kettering and NYU offer prone rads and in most cases, those with large or pendulous breasts are candidates. rads in that position appears to decrease the damage to normal tissue, the lungs and heart. So I need to find our if the place where I'm currently at offers that.

If anyone has suggestions, please chime in. I don't know what else to say except thank you so very much for being here and listening.

Gully

Hello Froggie,

So sorry you find yourself here. I too work in the scientific community and know too well what you are referring to as far as docs not being comfortable with all the added questions.

I had also read many articles on lung and heart damage due to rads. I chose to have a BMX instead of the radiation. Long story short, I live close to Boston so I had a "second opinion" evaluation done at Dana Farber.My case went all the way to the tumor board. In the end their recommendation was no rads. I did do 4 rounds of TC (long story) and have been on Tamoxifen now for 2.5 years. Something to think about I suppose. Good luck with your decisions. Remember the docs work for you!

SummerAngel

Hi Froggie,

I've been lucky with my doctors on the "asking questions" front. What's interesting is that when the cancer was found on the other side all of my doctors, including the entire tumor board, recommended mastectomy mainly because I was 45 with bilateral invasive cancer. Before the second cancer was found my BS had said that lumpectomy (well, I had already had an excision so it would have just been a wider margin surgery) plus radiation was an option if I wanted it, even though I have connective tissue disease that makes radiation risky. At the time of my initial diagnosis my MO consulted with one of the ROs on staff and they were both suggesting single mastectomy to avoid radiation.

Do you have other areas of concern on the MRI or mammograms? Just wondering as that was the final piece of information I needed to decide. The radiologist who performed my second biopsy pulled me aside before I left and basically told me I needed to do the bilateral mastectomy, period, because of the many areas of concern seen on the MRI. He was right, it turned out that I had multifocal cancer which by itself is an indication for mastectomy over lumpectomy.

exercise_guru

Wow what a relief they did that MRI. I was in a similar situation but I knew from the biopsy that I would be having Chemo since my Tumor was HER2+. When I found out I couldn't save my right breast because it had two areas of DCIS ( later IDC at surgery) I made the hard decision for a BMX and no Rads. I think you are asking all the right questions.

Paxton29

If I felt my doctors were annoyed at my questions I'd get at least a second opinion. This is YOUR life and you need to be certain all your options have been weighed and concerns addressed. Luckily my team is very patient, including with my nutball (but very loving!) parents. (My husband claims that when the surgeons came out to report on surgery results they asked them if the surgery had started yet and should they pay the bill now lol. He does tend to exaggerate but that could have happened.)

I too face a question about rads, in that my left side did have a clean but very narrow margin whereas my right side was positive. Given that I had a BMX it kind of sucks that they couldn't get nice clean margins but as I mentioned up thread that seems to be due to thin + not-large breasts. For me I want to be sure I throw everything at it but my MO is still discussing with the RO whether radiating the left side has more risk than benefit.

Jazzygirl

Froggie- I am somewhat of a unique case with respect to treatment, but will share what I went through as there were some of the same concerns around too much rads to the organs, large breasted women don't do well with double rads, etc.

Around the same time as I got my dx of IDC (mammao) on the left and DCIS on the right (from the following MRI), I ended up with a ruptured appendix and some major abdominal surgery all around the same time. My BS was going for a double lumpectomy with recommendation for internal rads before that, but after the big surgery that happened before, there was no way I was going to make it through a BMX. Too much surgery too close together.

Therefore, I had the double lump six weeks after my abdominal surgery and then went to AZ to have something called brachytherapy, which is a targeted radiation. They put these tubes in your breast(s) and put small radiactive seeds in for short intervals for more targeted zapping of residual cancer cells. My tumors were very small, slow growing and no node involvement which is the criteria for brachytherapy. When I did my treatment in 2012-2013 this way, internal rads was still considered more experimental but is become more mainstream now for early cancers. The guy I saw in AZ is considered probably the expert in the country on this and now teaches the technique internationally.

My concern with the double external rads to my chest was too much radiation to the lungs. I have been asthmatic my whole life and read some very bad stories from some women who had external rads with known lung issues, and huge breathing problems afterwards. My BS told me that she thought external rads would tank me and I may not recover.

I talked to two RO's about my case, the one in AZ who ultimately did my internal rads treatment and an RO here at one of the local cancer centers. The one here went through the options of what they could offer with full or partial breast external beam vs., what I was being offered in AZ. They were just starting to do brachytherapy here in town at that cancer center the month I was looking to have my rads treatment, but felt my case was complex and that I was not an idea starter patient. Despite not being too thrilled to have to go to AZ not once but TWICE to have the rads done, by talking to both ROs, I knew going to AZ was the right decision. I have never regretted the decision and am now three years out from all that and doing okay so far.

If I had not had the big abdominal surgery at the same time, I would have likely had a BMX as I think that is the standard of care for our bilateral situation. But given there was not time to wait, this was my only decent option for getting through this and recovering okay.

If you do have an RO consult, find out if internal rads is an option for your case. PM me if you want more details about the brachytherapy or place I went in AZ.

Englishmummy

Welcome Froggie:

You are so right, thank goodness for this site, and this forum - the members on this board here are great researchers.

Your medical team -they can roll their eyes and flap their gums all they want, but you must advocate for you and if you are rattling their cages, you must be doing a good job. You have every right to all the information you need and different game plan(s) as needed. I totally agree that both sides changes the plan with rads, it is not so easy to brush off or rationalize the possible SE's with both sides being involved.

I was given the option of lumpectomy + Rads on both sides or NSBMX with no rads. I went with the NSBMX which I knew upfront was the course I wanted, as I did. not. want. rads - I was told chemo was highly unlikely: my BS agreed BMX with recon as aesthetically it would produce the best result (sorry to be vain but that mattered to me :P. I am of slight build and had small boobs after breastfeeding 3 babies back to back. Plus, I just wanted them gone -I just did. I wanted to cut my losses then and there being as they were misbehaving so early on and being as so little is known about bilateral BC. I know it was the right decision for me and I have no regrets.

Keep us posted on your findings and the responses of your team. Stay strong.

AndreaC

Hi froggie, sorry you have to join our exclusive club.

I had BMX for IDC on both sides...one ER/PR positive, the other side was triple negative. I was node positive on the left side (the ER/PR+ side). I had four rounds of TC followed by radiation last year. My RO wanted to radiate both sides but after contemplating and discarding numerous plans, could not figure out a way to do it without applying too much radiation to my central chest area. We decided to just radiate the left node-positive side.

Ultimately the choice is yours...but for me, aggressive treatment was the only way to go - I am 53 (was 52 when diagnosed, although a year previously had beaten colon cancer)...I still have a lot to live for! Good luck to you.

Andrea

froggie

Many thanks to everyone for the warm welcome. Update is below and I will work on answering some of the question and comments that were made.

The receptor status is back for the left side. ER+/PR+/HER/neu-, Ki-67 3%. The surgeon called today and we talked for almost 45 min. I now have appointments for a plastic surgeon and onc. radiologist consults to get my questions answered and concerns addressed. He is recommending genetic testing, lumpectomies and rads assuming I am comfortable with lumpectomies after the consults. He does not want to wait for the genetic testing as that will take too long. If I am positive for any of the genes, then he is recommending BMX at that point. He answered all of my questions and we had a good back and forth.

I have a paternal aunt that was diagnosed with breast cancer in her mid 60s and she is now 84. Other than that, there are no other cases in the family. Regardless, I will have genetic testing. The BS is clearly on the band wagon that bilateral disease means I have one of the genes.

The right breast was presented to the full tumor board but I forgot to ask if the left breast and the fact that I now have bilateral cancer was brought back before the board. I will be contacting the navigator in the morning to ask that question and see what the recommendations of the board were.

The area hospitals are non starters for me so I have been driving down to Hopkins in Baltimore. I am starting to collect papers and information for the two consults. That's here I'm currently at.

Jazzygirl

Froggie- My surgeon believes most bilateral cases are genetic. I have been tested for BRACA as well as several other generations of tests they now have. Everything negative so far. My sister and I turned up with bc dx two months apart, but otherwise, only a distant cousin on the fathers side who has had it (young gal that also suggests genetic). My sister only had one side and different kind of cancer too,

I hope you continue to get good information.

BarredOwl

Hi Froggie:

Have you received genetic counseling and a Genetic Familial Risk assessment from a Genetic Counselor? If not, please request a referral. I would insist on counseling prior to testing, especially if genes other than BRCA are included in the test.

I chose BRCA testing, but declined to have additional genes tested.

BarredOwl

froggie

Hi Gully,

There's not much expertise in breast cancer locally. They treat it, but there is one or two BS per hospital, one onc radiologist, lots of plastic surgeons but no one that does DIEP and none of the pathologists special in breast cancer. I had a biopsy back in 2009. The person that did the pathology was a generalist. The report said benign but I didn't feel confident about it. I had all the slides sent to Hopkins and went down for a second opinion. I liked it there and have been making the trip down yearly ever since.

I hear you, though, about getting a second opinion. I'm looking at institutions in Philadelphia and Manhattan and hope to decide in the next day or so.

froggie

Hi SummerAngel,

The MRI was clean except for the discrete mass that enhanced in each breast - there weren't any other spots. The day I had the MRI guided biopsy I asked the radiologist point blank how I could have any faith in screening mams for followup when the 2D & 3D never picked up the mass in the left breast. She said mams would still be beneficial since they will show areas of distortions but that I would also need to have regular MRIs.

froggie

Thanks, exercise_guru.

froggie

Thanks, Paxton29. Agree and I'm working it.

froggie

So sorry you had to go through all of that, Jazzygirl. I haven't had SN biopsies yet so I don't know what the status will be. Based on the small size of the tumors, BS is expecting them to be negative. While I certainly hope that will be the case, I will believe it when I see the final path report.

I asked about the scenario of positive nodes and the BS told me not to worry about it as the rads will take care of it. I have noticed in the literature that it is becoming more common to nuke the nodes if the SN is positive rather than going back in to do a full dissection. I have mixed feelings about that and haven't had a chance to investigate it further.

I came across internal rads while I was looking at prone rads. Sloan Kettering has been doing both for a while now and I have them on my list for second opinions in general and definitely as a place to do a rads consult. Both methods are supposed to limit rads to healthy tissue and better protect heart and lungs but it sounds like the internal rads may be better at it. Whether I would be a candidate for it remains to be seen. Thank you for sharing. It is good to know that you did the internal rads and survived it reasonably unscathed.

I'm on the east coast and AZ will be hard but I'll definitely keep it in mind if SK has nothing to offer.

froggie

Thanks, Englishmummy. I'm torn right now and rads is the primary hang up for me. I have tender/trigger points in my chest wall muscles so stretching them for implants is out of the question. From reading here, most women seemed to be pleased with their DIEP results. However, there have also been some horror stories that have given me pause. I need to know more about that and whether I would be a good candidate. Recovery will be significantly longer and more painful from reading. However, it seems the pain will not be directly resulting from stretching out chest muscles. My husband, god love him, wants to know why I would put myself through all of that when I can just stuff my bra with those 'things' as he put it.

I'm starting to think that if I am not a good candidate for DIEP and it comes to BMX, my only choice will be to go flat with prostheses. There are worse things but I don't relish the thought of always worry about necklines on tops, etc.

froggie

Thanks for sharing, AndreaC.

froggie

Hi BarredOwl,

Yes, I will be receiving genetic counseling in addition to getting tested. I received Genetic Familial Risk assessment by email today and am working on filling it out. They will set up an appointment for me as soon as I get it back to them. It is going to be somewhat of a challenge. My mother is 85 and is the youngest of many kids. She doesn't remember or never knew the birthdates of ther older siblings as the age difference was great. Two of her sisters are still alive but one is 87 and the other 93 so I don't know how much help they will be. I am overwhelmed right now. There is so much to do and read and so little time to do it in.