Decision Time: Advice Requested

DesertILC

Howdy folks,

Wife was dx'd with ILC (age 44), and is ER+/PR+, HER2-. She saw the surgeon on 12/28. The regular Oncologist 1/5. She has not seen the Radiation Oncologist yet. The surgeon wants her to see the RO before she performs the surgery. Surgery is tentatively set for the afternoon of the 20th. We don't yet have the MyRisk Panel or Oncotype results back yet (though they drew blood for the MyRisk back on 1/5, and the regular oncologist said he would order the Oncotype).

Since her tumor is smaller than 4 cm, the surgeon says lumpectomy with radiation is an option (pending MyRisk results) even though it is attached to the chest wall. Wife is inclined toward mastectomy since the mammo did not discover the ILC despite the palbable thickening. I want whichever is best for her (including her peace of mind).

It seems from what I have read, ILC has a high recurrence rate, and the need for further surgeries are reduced if there is a mastectomy. It is also clear that with a mastectomy, recovery is longer.

What would you recommend based on your personal experience?

Meow13

If she does the mastectomy would she still need radiation? I had 2 tumors about 1cm a piece ILC and IDC. I did mastectomy no radiation or chemo but did do AI drugs. My DIEP reconstruction had excellent results, had I known how good plastic surgery could be I never would have been so sad. My oncodx wss 34 but I chose no chemo, I am 5 years NED.

DesertILC

My understanding is no radiation with the mastectomy.

The path showed ILC, "classic pattern, moderately differentiated". Nottingham score 6/9. Ki67 elevated (20%). And, "e-cadherin and p63 immunohistochemical stains support the diagnosis of an invasive DUCTAL carcinoma, a PHH3 (mitotic count) reveals 12 mitoses per 10hpf." I added the all caps to ductal, as the surgeon thinks maybe this was a typo.

Meow13

Sounds similar to mine, except my 2 tumors were close to the surface 4 cm apart and I had a suspicious area that turned out to be normal tissue. My mitotic rate was 1, her2 negative. I think being pr - was why the oncodx came out high. I am glad I didn't do radiation. I was 53 years old in excellent health and a good candidate for DIEP.

Nottingham scores 5 & 6. So far so good, I had alittle trouble with side effects from hormone therapy but I am done now.

I originally was told ILC but after mastectomy pathology one tumor was classified ductal. It could also be ILC with ductal features.

Anonymous

ILC has a tendency to be multifocal and if recurs, higher tendency to recur in both breasts. My MO confirmed, and that's what the research claims. ILC also grows in a way that hides from mammograms and even US. Mine hid from regular mammos that claimed I was "clear" for 5 years before I found it through a random breast self-exam. I also had extremely dense breasts, even more hard to find ILC with that kind of tissue.

With that knowledge in hand, I opted for a BMX with immediate reconstruction (see all my tx below). I lost sensation in my breasts, which saddens me because they played a part in sexual satisfaction. I'm dealing with that, though, knowing that I have less likelihood of recurrence only because there is less tissue to go bad later. But it's not 100 % guarantee, and I live with that knowledge daily too.

Claire in AZ

wallycat

ILC has a tendency to show up years later more so than IDC but not sure the comment "high recurrence rate" that you posted is quantifiable. Higher than what?

My breast surgeon tried to convince me that I should have a lumpectomy (which I did) and radiation, which I refused and went ahead to have BMX. I am sure I had my cancer for over 5 years but perfectly clear mammograms. MRI was the only thing that picked up my cancer. My decision to have bmx was because I could not envision having mammograms and MRIs every 6 months to watch for the beast. I'm a worrier and the anxiety of these would have added insult to injury for me.

I opted for no reconstruction so that if anything showed up, I was able to see and feel it. Yes, the sexual aspect of losing sensation in my breasts makes me very sad but death is even more concerning. As Claireinaz posted, it is not 100% guaranteed since the cancer can spread to skin, internal organs, etc. and a surgeon cannot remove every spec of breast tissue, so even local recurrence can happen.

Radiation has its own risks (which for me, were too great to take) so my choice seemed pretty easy. As you can see by my sig. line, my tumor was 1.8cm even though the MRI thought it would be 7mm.

I'm so sorry you and your wife have to deal with this. Lots of progress in cancer and we are all holding our breath for the cure.

Meow13

Because my tumors were close to the skin, my surgeon removed alot of skin tissue. I was so glad to read the pathology report say no evidence of disease in the skin. Also detailed analysis showed cancer in the 2 spots no where else which may not be typical for ILC. My onco said since I would be taking AI drugs absolutely no reason to do a bmx. That view is not shared by all oncologists but to this day my real breast shows nothing even suspicious very clean. One thing that is important is getting MRIs especially with dense breast tissue atleast once a year.

Wally interesting enough my DIEP breast is the one that had a scare this past summer. It turned out to be nothing. I still have MRIs and Mammograms on it even though there is no breast tissue. I don't complain insurance pays maybe it is overkill.

wallycat

Meow,

it is great to hear you are doing so well. It would be great for all of us, no?

My tumor was not multifocal and it was not spiculated (the radiologist assured me it was not cancer and she wept when she phoned me).

We all have a different personality and threshold for uncertainty and exams. We were relocating to an area that did not have close access to a breast MRI, I also did not want the dyes that go with that and the waiting for test results would be pure torture for me, even if the insurance covered it all at 100% . I know insurance coverage keeps changing. When I first required the tamoxifen, it was covered 100%. By the 3rd year, I had to meet a deductible and all costs for drugs or care had to be met by me first. Who knows what it will be next year. Cost was the least of my decisions at the time I made my decision.

I admire women who can go through the screenings and not have melt downs and for them, watch/wait is great. We need to understand our personality type and the long haul of this disease and then base our decisions on what is livable for us. I know that our marital status, age, and all of that also play into these decisions. I remember how much I thought it through and hoped I did the right thing both for my emotional and psychological outcomes as much as my cancer-care outcomes.

reflect

My tumors were IDC, multifocal and I was initially all set for BMX (totally freaked out) then MX, then a consult at Dana Farber resulted in fancy (multiple wire localizations) lumpectomy. I could not take on board all the recon/norecon decisions and felt if I needed an MX later so be it. Also the research I read showed slightly better outcomes for lumpectomy + rads than for MX. I don't know how ILC dx changes the picture.

I will say that rads was horrible for me, but I think my team was lousy. If your wife goes the rads route check out Mepitel for prevention of burns and skin loss.

I think my emotional recovery (still in progress) has been helped by keeping my breast.

Everyone makes their own choices and that's as it should be. Wishing your wife well.

Meow13

Wally, you make an excellent point. The last time when they found "something" they went right to biopsy. The problem is now you have introduced more potential scar tissue more changes to flag diagnostic exams. It seems like a catch 22.

Since I have my real right breast I have to do the MRI anyway so for me it doesn't make that much difference. Insurance wise it might be better if I only do one side mammogram.

Anonymous

I might add I was one of the luckier ones and pretty much sailed through tx. Rads worked to give me what looked like a bad sunburn but the particular cream and lotion the rad techs gave me worked well to keep any pain I might have had away. Recovered quickly when the rad tx stopped.

Post BMX I reviewed my pathology report with my surgeon. The report showed mild dysplasia (suspicious for future c development) in the "good" breast. So I was even more relieved to get all the tissue I could out of my body where it could cause trouble.

Of course with 6 + nodes, I don't ever stop worrying about recurrence. But I figure I gave myself every chance I could re: tx that was offered to me (or that I demanded).

I don't even hope for a cure. I hope for a way to stop tumors in their tracks when found. It is only when they want to pack their luggage and travel to other parts of our physical landscape that the trouble begins. So just a way to safely treat c like a chronic disease, where it doesn't grow anymore, would be enough for me. I think it's happening in many subtypes of bc but still a long way to go.

Claire

yogamama

I'm with Claire on this (Hi Claire! I was in Flag last summer, briefly...ready to move back). You never stop worrying about recurrence, in spite of making the most radical decisions regarding your treatment course. Let her make the decision for herself, and be supportive of that decision. For me, and my advance stage, at GONE. I declined reconstruction and my MO agreed that I should not have recon, secondary to my high risk for recurrence. I had less fear, possible, than most due to the fact that I've worked in oncology for 15+ years. I had no illusions about what I was in for regarding surgery, chemo and radiation. I was also witness to many who declined what was prescribed to them initially, only to return to us for treatment that would, sadly, not save them. Go big NOW!

I wish you and your wife the best on this journey. Peace of mind is worth striving for. Why add to the stress of an already untenable situation?

vlnrph

In terms of unimammogram insurance coverage, I always ask if the bill will be half of a regular bilateral exam and get told 'no'! Doesn't seem correct to me since machine/personnel/analysis time is all less however when I have MRI on the remaining side, my autologous reconstruction & chest wall are also seen and a report is issued addressing that area. This service is included at no extra fee which I figure offsets the double charge for the x-ray...

Keep in mind that the new 3D technology, also called tomosynthesis, is probably much better at ILC visualization than digital scans (forget about the old film versions, especially with dense tissue: lobular lesions can go undetected for years using that antiquated system)

Desert, it may be worth requesting an addendum to that pathology statement, if the ductal reference is an error. Once a mistake enters a medical record, it can be very difficult to rectify. Hoping your wife has a good result.

wallycat

The MRI requires a dye, whether they do one breast or two.

I had 3-D imaging and ultrasound and they both missed my ILC cancer.

Don't be afraid for a second or third opinion if you are not comfortable.