One year later . . . now what?

Hi, Kristi!

I haven't been dealing with this quite as long as you have, but I know what you mean about some of the information not sticking well. I sometimes think that there's an element of PTSD for us with this whole thing. And Tamoxifen (which I am also taking) appears to make things a bit fuzzier, as well. I also find it annoying that there's not a lot of good information on invasive lobular, because I believe it is different, and does different things.

Here's my understanding, from my festival of reading and talking to oncologists:

I can't imagine you'd really need a mammogram if you have had both breasts removed - if your cancer recurs in any residual breast tissue, it would be right there on the front of your breasts or in the scar. The implants are behind the muscle, which pushes it forward, so the "back" of your old breasts is sort of the front now. The only thing "inside" is the implant, right? I know they still will examine your breasts and scars. I'm sure your oncologist has an opinion on this, or perhaps the plastic surgeon, although maybe that's not really their area.

My understanding with lobular is that it can tend to show up in the abdomen if it spreads - I suppose I need to look more into that. It's less likely to go to the areas that IDC spreads to, like the bones and the brain. My understanding of ovary issues is that it's a huge risk if you're positive for the BRCA gene, but I'm not of the impression that having early stage lobular has increased my risk for ovarian cancer without that gene.

Taking Tamoxifen creates a slight risk of uterine cancer. Apparently, we are supposed to have uterine monitoring of some kind to watch for that. Allegedly, it's more common in postmenopausal women, and one of the reasons they don't recommend Tamoxifen for them. The increase in risk is apparently big, but the resulting number of cases is still really small, since it's not a very common cancer. The risk comes from the Tamoxifen, not the original breast cancer.

The studies on soy and other "phytoestrogens" seem sort of inconclusive. Sometimes, they think it's good, other times it's evil. I am not avoiding it - I often have soy milk on my high-fiber cereals for breakfast, because I'm not a big fan of milk - but I'm certainly not loading up on it. My oncologist did not tell me not to eat soy.

One thing I am doing is taking Vitamin D - many women with breast cancer were found to be lacking sufficient vitamin D, and not only am I not drinking milk but I'm not out in the sun a lot. The vitamin D helps your body absorb the calcium.

Regarding spread, it seems that the plan is to just live your life, and if something seems odd, get it checked. Since I still have breasts, they will be kept under close surveillance. Without them, I think they would just be waiting for me to have symptoms of something before they'd do a scan. I have a friend who had high grade triple negative ductal cancer at 39, and she's having scans because the most risky time frame for her is the next three years. I remember reading somewhere that with low grade lobular, the time it's likely to recur is after about 10 years. Can't remember where I got that.

You were very aggressive and thorough in your choice of treatment options - I was kind of a wimp.  I think if I were you, I'd ask my oncologist about follow-up plans, and then just try to go live life. If it's the breast cancer that shows up somewhere else, it's Stage IV and it's not like you can get rid of it. You may live a very long time with it or you may not. If it's another type of cancer, that would be an unfair bummer but a totally different ball game, I guess.

If someone reading this sees that I have misunderstood something, PLEASE call me on it! I don't want to have my facts wrong.

Best of luck to you with your implant exchange, and may your cancer ordeal be OVER!

Coleen

I have not been able to find a proper answer to the post BiMx follow up question. Some people say you have to do mammos others say it can't be done. This includes two Onc's and a breast surgeon that I have asked who all say physical exam is the only thing to do going forward. But there has to be something that one can do to be vigilant both for the breast area and other areas of the body where there is even less material on what follow-ups can be done. So I'll post some questions hoping to get a few more responses so we can maybe see what the majority view is:

1. What is the MOST AGGRESSIVE follow up regimen one can do after BiMx (with or without recon)? Is it mammo, MRI, US or all of them in addition to physical examination?

2. What is the follow up regimen for other parts of the body? Blood tests, scans?

For those that have been told that a mammo should be done or have had one post BiMx is there some special way it is done (couldn't it cause implant rupture in the case of recon?) 

Kristi--I have no information about mammos post mastectomy, since I went the lumpectomy route.

 I believe ILC's preferred spread sites are the bones, the GI tract, and the female organs, but it is NOT more likely to spread than other types.  In fact, classic ILC, as opposed to more aggressive types, is rahter indolent, though it certainly can't be trusted.

As for soy, occasional eating of tofu, use of soy sauce for seasoning, etc. probably won't make any difference, since your body produces a certain amount of estrogen regardless of diet. But if soy is a regular and prominent part of your diet, better cut down. I don't know how much soy milk Colleen is consuming, but I'd limit it to less than a glass a day.

I had a bilateral mast. and was told by my breast surgeon that I won't be getting any more mammograms. I also have expanders and he said any local recurrence would be pushed forward and very obvious even if pea-sized.

When I asked my oncologist about ILC going to places like ovaries and the uterus....I asked if I should have them out and she said no. I'm on Arimidex since I was postmenopausal after chemo.She said "soft tissues" can be lungs, liver and skin so I can't get rid of everything! She reminded me that chemo went through my body, radiation took care of the chest area and now arimidex is taking care of my body. I guess we count on things working for us and pray for the best.