ILC Is there more chance of bilateral?

I have been carefully reading the posts of the diagnoses and surgeries on this forum. I am amazed at how many multiple surgeries I am seeing, although I don't know what percentage of them are implants, but it seems like a lot to me. Maybe having had them already is what's steering me away. My manicurist had flap because she liked the idea of having her own tissue but she said it was a hard and painful recovery and looking back she wishes she had gone for the implants. And that's why I am thinking about it. I just want these things OUT.

Trvler, as 2tabbies said, she was taken aback by how much she hated being flat. It could happen to you too, of course, but for me it was the opposite. I expected to hate it and then I just didn't. It was weird at first, obviously, and I still miss the boobs every so often, but it does not affect me all that much. Mostly, I am grateful that the parts I lost are "luxury" parts, rather than essentials like arms and legs.

However, I am completely with 2Tabbies on the doctors being very bad at giving full info on this. I too was told that I could get recon anytime, any which way I liked. Just 6 months ago, my onc, once again, started telling me to get recon and how great that would be for me. As I lay into him, it turned out that he had no idea, none, that implant reconstruction is not a good option for us glow-in-the-dark ladies. He seriously had no idea, so I sent him some stats later about the failure and complication rates etc.

"One and done" does seem rare in the recon world. My impression is also that most women end up with a minimum of 2 surgeries (expanders and swap or else flap and flap adjustment) and that is best case scenario. I am really not fond of surgery, so the whole deal is very unappealing to me. My standing joke is that I will get recon when they are able to grow me a perfect new set in a lab.

Nomatter, I made my onc write a note in my chart, while I stood over him, never to ask me about recon again.

so interesting, this discussion. I had a unimx in 2010 as my BC was multifocal. Had no desire to do immediate recon as a new breast was the last thing on my mind at the time. I couldn't understand how it was even a topic under discussion while I was waiting for a path report which would determine the extent of the disease. My youngest was 13 at the time and survival was way higher on my list of priorities than a new breast. I knew that it would always be an option for later and my method of coping was to deal with things sequentially. Another sidebar that probably influenced my decision is that DH is a plastic surgeon and I had spent 20 years hearing stories about complications in recon in the hospital department. I knew that getting new ones is not always simple and straightforward. Yes, many women are happy, but I knew the details about the few who had nasty complications. Mostly, though, I think I was just weary of hospitals, of being poked, prodded, invaded, of recovering. It is now almost 5 years later and though being assymetrical is annoying, I am at peace w the new me. Self acceptance has been long in coming but I'm happy that we can all take advantage of all options available to us. No doctors bring up recon with me and I am happy that they respect my decision. I like knowing that the options are out there and that they're constantly improving. I think the most important thing is for each woman to take the time to think all options through clearly and then to do what's best for them. I absolutely don't advocate rushing. On this one thing, you have time.

ladies, thanks for the informative posts. I am quickly coming to the conclusion that we are pretty much caught between a rock and a hard place. The choices we make about reconstruction (or not), are dependent on experiences, current life status and self image. I was 65 at dx and I'm finding out a lot about who I really am, as opposed to who I thought I was lol. I don't think there is any easy way out of this, but there is a way out. I do feel let down by my Oncology team, especially relative to ILC versus IDC. Yes, the survival rates are pretty much the same, but the nature of ILC is different, and that means those of us with ILC face potentially more surgery, and different decisions based on how this type of cancer is monitored for recurrence. My tumour was not seen on mammo, nor on MRI. I actually found it because of an anomaly ( I had a lump, which is not the norm for ILC). If anything, I trust my body to let me know if it shows up in the prophylactic breast. Best wishes for a speedy recovery to you all

Hi All,

I've been reading this thread with a lot of interest. I had a unimx and now am really wishing I had both removed. At the time of surgery, both my MO and BS recommended taking only one breast in order to reduce the chance of a possible infection delaying other treatment. I said fine although I really wanted both removed. About 20 years ago I had an excisional biopsy on my "good boob" that showed ALH. I was surprised when the cancer showed up on the other side. Anyway, now that I'm feeling better, I approached the subject of removing the remaining breast with both the MO and BS. Both told me that Medicare (I'm 66) would not pay to have a healthy breast removed. I can't even get an ultrasound or MRI on the healthy breast because they say Medicare will only pay for it if the diagnostic mammogram shows a problem.

So here I sit, in fear of ILC growing in the so called healthy breast not knowing what to do. I certainly can't afford the operation on my own.

Do any of you have any Medicare experience with a mastectomy to the non-cancer breast? Just wondering. Thanks.

KayaRose, it's absurd that Medicare won't pay for an MRI on your remaining breast when you've had a cancer that DOESN'T SHOW UP ON MAMMOGRAMS in the other breast. I don't mean to shout, but that's ridiculous. I'd push the issue. As Leslie said, it might just take your doc writing the documentation in a particular way.

Kaya, I would look into this. I was diagnosed ILC in Nov 2006 and had a uni on right side. Ever since, I have an MRI and a mammogram every year on my good boob and the reconstructed one. I have never had an issue with insurance.

ILC is sneaky. We need to be watched closely!

Best of luck.

Cyndi

Kaya, I am on private insurance. Is Medicare that much harder to deal with.

Yikes! 😮

Cyndi

Hi Kaya,

My MO orders whatever she deems necessary. I had a full body CT and Bone scans when deciding whether to do chemo and radiation a couple months ago. I had an ultrasound a few weeks back to check some lumpy tissue. I have more on the other side. She said I'd have a Breast MRI next. She'll order one when I next see her.

My last digital mammogram completely missed the cancer, yet it was very obvious on ultrasound. I'm on Medicare and the only test they balk at without evidence is a PET scan. Their guidelines say they must find a suspicious area first. There are times I wonder if they limit healthcare so we pass on and don't cost tons of money. However, ultrasounds are always authorized if you have any ambiguity, and ILC just isn't picked up in mammograms. I believe the standard of care is a MRI on the good breast. I'll see what the manual says. It's online

Kaya,

I found a link to the main Medicare manual. Look under Diagnostic tests. I think your Dr. Is too lazy to fill out the paperwork stating why a more advanced screening is necessary. Having ILC is a good enough reason to be performing other diagnostic tests.

I imagine large cancer centers have explanations for Medical Necessity already typed up for use to save time. Cancer involves lots of screenings. Can't imagine anyone bating an eye over seeing an Ultrasound or MRI request coming in for you

General Medicare manual

Chloesmom, here's my background. Hope it helps. I was diagnosed with stage 1 ILC this year after I had a prophylactic mastectomy of my right breast. At the same time, I had a mastectomy to remove what they thought was a 3 cm lesion in my left beast (nipple to chest wall). Images of the left (us, 3D Mammo and MRI were showing a large invasive cancer but 2 biopsies showed high grade DCIS and LCIS, hyperplasia, sclerosis, you name it). So they didn't know what we were dealing with. Final answer would have to come after surgery.

I had had extremely dense breasts with stable calcifications (BiRad 4). The 3D Mammo showed nothing on the right side, but the MRI showed a lesion which the BS was not worried about at all--a fibroadenoma, they said. Because my Mom passed away from recurring, two primary metastatic breast cancers, I opted for prophylactic on the right. Also I wanted to avoid radiation, but tumor so Long and deep on left, total mastectomy was only choice. Also didn't want to be on hormonal therapy, if I could help it, so decided on prophylactic on left. BRCA negative by the way.

Post surgery, the findings on the left were 6 cm of grade 3 DCIS, LCIS and cancerization of the lobules, embedded in a large sclerotic (benign) lesion, less than 1 mm margin in at least 2 spots, suspicion of micro invasion, isolated tumor cells in 1 of 3 nodes (highly ER positive; PR 10%; HER 2 -ve).

What's more relevant to your question, on the right side they discovered a 0.9 mm Grade 2 ILC, highly ER and PR +ve, HER2 negative. Followed up with axillary dissection on right side: 0/14 nodes. Yay! I was smart (in decision) AND incredibly lucky. I've seen way too many stories of stage 3 and stage 4 ILCs at original diagnosis. Oh I had also had a PET-CT scan no contrast, and there was mild uptake in left side but not on right ILC side.

Because Oncotype scores were in the low spectrum on both sides, no radiation or chemo were recommended (1 RO, 4 MO opinions). On Tamoxifen after all

Your body; your choice. Insurance covers this by federal law. Warm positive thoughts.

Hi Chloesmom,

I'm so glad you're doing well and feeling good about your decision. Yes, BMX sure buys some peace of mind, and that is so important!

Wishing you continued healing and peace of mind