One year later . . . now what?

grafiti4u

Hi all. I am 50 years old. I was diagnosed with Stage 1 Invasive Lobular Breast Cancer one year ago. I had a mastectomy on that breast and went through chemotherapy, When chemo was done, I opted for a prophylactic mastectomy of the unaffected breast, and began reconstruction on both breasts in June 08. I am now at the final stage of my reconstruction, and will be having my exchange surgery in a few short weeks. I am currently on Tamoxifen and 1800 mgs. of calcium per day. I also took the genetic test and the breast cancer gene is NOT present.

It has been a long year, but I thank God I caught it early and this is all behind me now
. . . or is it?

There was so much information given to me during the past year, that I started fading out with info overload. Some ladies are really up on exactly what is going on with them.  But for some reason, all the info just doesn't stick with me.  I am not 100% sure of what I should be aware of now, as I get conflicting info from my doctors, nurses and friends. Here are some questions in the back of my mind, I hope some of you can answer them for me:

1. Do I still need to get mammograms even though I had a double mastectomy with reconstruction (I have heard yes and no on this question).

2.After having this type of cancer, am I prone to have cancer flair up in another part of my body? I was pretty sure ovarian cancer was one, but are there areas to be more aware of?

3. My doctor told me to stay away from Soy since lobular cancer was estrogen fed. Now that I have had both breasts removed, should I still stay away from soy so cancer doesn't reoccur elsewhere?

Thanks for any insight - this board has been a wonderful resource for me during the past year!

Kristi

Anonymous

Kristi

Those are all some very good questions.

1. I have heard both ways about the mammo too so not sure on that one either.

2. I didnt have IBC, mine was IDC but when I asked this question they said there is some chance for cancer flare in other parts of the body, but it is a "bit" higher with other types of bc than mine. Now 2 yers later I see ladies that had similar dx's and tx's to me that are having recurrence or mets so I find it a little rough to believed that it is more common with one type more than the other...

3. I was told since I was 95% er+ to stay away from soy as well and to my understanding it was for my lifetime...I dont believe it matters if you had a lump or mast....the estrogen would still be floating/looking for somewhere to attatch and so potentially feed cancer cells.

Best wishes

Jule

Kleenex

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

hlya

Seems there are a certain amount of women who have the same question in mind.

nim88

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?) 

TXBadboob

My MIL is a two year survivor for IDC.  She had a unimx, and has a PET scan done on her yearly.  An MRI is best for those with recon.  I think the PET is pretty expensive, since they don't order those often.  I've only had one before my tx., but I'll have MRIs from now on for my chest, since I do have recon.  My onc does blood tests quartery, but I'm going to ask her about getting a PET scan to be on the safe side.  I would feel a whole lot better about telling people I'm cancer free with that knowledge.

Thanks,  Deen

Seabee

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.

Kleenex

Regarding the soy milk on the cereal: I pour about 1/2 to 1 glass over my cereal, eat the moist cereal out of the milk, and discard the leftover milk. I've just never been a fan of drinking any sort of milk, regular or soy. But I'm also not fond of dry cereal. I think I probably ingest about 1/4 cup or less on days I have cereal. A carton lasts me so long I start to worry it's going bad.  I'm not really worrying about it as a source of phytoestrogens... I do like that the light vanilla soy milk can make very healthy "twigs and rocks" sorts of cereals taste fabulous...

ktn

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.