Team ILC Warriors
Comments
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lekker, the counselor spoke to me and my husband about Lynch but recommended my mother get tested for it instead of me. I think because I'm not presenting with any "symptoms" of it. If I remember the conversation correctly. I told my mom and she said she would go and get tested. Meanwhile, I'm waiting on the results of the BRCA 1 and 2 and if both are negative they will test for CHEK2, I believe.
I went with a lumpectomy and rads and have been quite comfortable with my decision. If something shows up in lefty in the future I'll deal with it then. I'm going to insist on at least an ultrasound, though, for lefty come August when I go for my follow up since it was an US that picked up the ILC in righty. I don't trust mammograms anymore.0 -
Fearlessfoot, I've been on tamoxifen since Dec, 2012 and my SE are very mild hot flushes. First 4-6 weeks I was a bit more "emotional" and cranky, but that's about it.
I actually was really worried that I may be a poor tamoxifen metabolizer and therefore I'm not converting it into it's active form (endoxifen). Endoxifen is the one that blocks ER/pr receptors instead of letting estrogen get to them. The higher endoxifen levels in blood, the lower chance that estrogen will get to the receptors. Since my SE are so mild, I insisted on doing CYP2D6 testing to see which group do I belong to: normal with both genes working, intermediate or poor metabolizers. I knew that if this test is going to show that I'm a poor or intermediate metabolizer - I will do oopheroctomy and switch to AIs, (which, by the way are more successful in treating ILC) much sooner.
My test came back at 26. 4, which is "normal/almost excessive" metabolizer/ high endoxifen concentration in my blood. That means that even without awful SE, my liver is converting this drug properly, therefore the chance that it is working is higher. There is a couple of studies going on to establish whether NOT having SE means that tamoxifen is not working... That doesn't seem to be the case...
As for the cyp2d6 - There was actually several studies and there is some controversy around it. There was a great article published by Mayo on Dec 26, 2012.0 -
AmyinMe, what is CHEK2?
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Maggs,
A mutation in this gene results in decreased DNA repair which leads to increased susceptibility to cancer (breast cancer). It's more common in women of northern and Eastern European descent (I am mainly Scandinavian). Gotta love Wikipedia (for some things)! 😉 It's great to hear about your minimal SEs with tamoxifen, too, and that your liver is working properly to metabolize it. I'm going to be starting that soon and am hoping for the same. But, don't we all? 😊
Amy0 -
It wasn't my Father had the Prostate, it was my Mother's Father. First Onc said that with the Prostate in the family history, there was a connection to watch for Uterine Cancer. We didn't realize at that time that his Sister had died from Ovarian Cancer, so a double dose for me. I've not gone for genetic testing, although I did have BRCA 1 and 2 tests - negative. It's not like we can change our DNA, after all.
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You're right in that we can't change our DNA. I'm doing the testing for my children and what their future may hold. Keeping fingers crossed that there is no genetic mutation and that our family has just had poor luck. Maybe it will stop with me? I can only hope.
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I agree that we can't change our genes, but we can make treatment and surveillance decisions based on test results. OncotypeDX looks at a small part of the genetic makeup of our tumors to calculate our risk of distant recurrence within 10 years. This is to help us evaluate the risks/benefits of chemo relative to our risk of recurrence and is therefore only done at the beginning of the treatment process. The BRCA, CHEK2, Lynch and Broca tests that have been mentioned in this thread test our DNA for germline mutations in known genes that have been implicated in developing cancer. Germline means that the mutation would be found in every cell in our bodies - not just the tumor.
There's been a lot of discussion about adding breast to the list of Lynch cancers and colorectal to the BRCA cancers. The understanding of the genetics of familial cancers is still in its infancy. A lot of docs I've spoken with seem to think we are about to take off and it won't be long before we know a lot more. My children are still young so I hope they figure it out soon!
I had to laugh about Fearlessfoot's comment about her tumor being locked away in a vault. The first step for me with the genetic counselor was when she pulled a sample of my colon polyp from 12 1/2 years earlier to run the IHC test on it for Lynch. It was negative and they didn't run the MSI testing for whatever reason. I was really surprised they still had it. The IHC testing has a more accurate result with an invasive tumor so the margin of error was higher with mine. I've pretty much been tested or all of the known stuff - and I've had all the surgeries I could have. Now it's on to an AI and the hope that it was just a coincidence like they told you Maggs.0 -
Maggs - great info about the CYP2D6. Thank you... I would def. like to know where I stand when it comes to metabolizing tamoxifen. I'll have to remember that when the time comes.
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Hello ladies
Wednesday I got the results of my second biopsy. I did have a fibroadenoma, but it also brought with it some DCIS. Now a lumpectomy is off the table and I'll have to have a right mastetomy. My SO said that I'd also have to have breast reduction on the left to acheive some symmetry because I'm a 36DD.
Now I'm thinking about doing a BMX since surgery will be required anyway.
Has anyone else been in this situation?
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Lekker, great info about genetics testing.
I'm impressed that you were able to get all these done! Over here - getting anything extra (outside of basic protocol ) is like "pooling teeth".
I think, I mentioned before about my tiny lung nodules, not concerning to dr but worrisome to me. (Especially after already having 2 primaries last year).
I've met with a thoracic surgeon yesterday to discuss surgical removal of those couple of spots for testing. We are talking an "open surgery", as these nodules are to tiny to risk doing VATS. Dr is almost sure that it may end up being "a surgery for no reason", but my response was: "I'm praying that it will be a surgery for no reason".
Just the fact that my ct scan report says: no evidence of metastatic disease - is not very convincing. Last year I was in this situation before bc dx (all tests, including needle biopsy were negative), and thank God, I insisted to have "that fatty dense lump" removed! It turned out to be stage III ILC! Can you imagine what would happen if I took the advice I was given then to "come back in 2 years for routine mammo"???!!!
So here we go! In a couple of weeks they will remove those nodules and we will know for sure!
Whatever it is - I want it out and checked.
I know it is not an easy surgery, but I think it will be worth it at the end - to either just give me that "peace of mind" or in the worse scenario - remove any "new crap" before it starts growing...
I emailed my BS and asked him "off record" question what would he do if he was in my shoes?
And he said (outside of protocol recommendation) that it is a good idea to remove it and know for sure. And I trust this man with all my heart, so that helped me to say "yes" to surgery.
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Here's to a totally unnecessary lung surgery Maggs! It's so hard to make these decisions. Yes, odds are that those lung spots are nothing (hence the cheer at the beginning of this post), but the only way to know for sure is to look at them under a microscope. I've posted before about "over treatment"...
"Until they find a way to identify which tumors are dangerous and which aren't, until they find a way to tell you if you're cured surgically or you have breast cancer cells currently circulating trying to find a home, until there's a cure... "over treatment" is not hysteria - it's as valid a choice as any other. After all, how will you ever know if you would've had a different outcome with different treatment decisions? The answer is that you never will. No matter what choices you made as you were thrown into the vortex of a breast cancer diagnosis, please try to be at peace with those decisions. You did the best you could with the information you had at the time. There's nothing more any of us (including the oncologists) could've done."
The doctors can have their opinions but we are ultimately the ones who have to live with our decisions.0 -
Lekker, thank you! Your words made me more confident with my decision to go through with this surgery, even if it proves to be unnecessary. And like you said - there is only way to find out.
And if there is something wrong, at least at this stage - there are still many options to treat it, put it in remission, remove it and prevent from spreading. On another hand if it happens to be some infection or fungi - that can also be addressed with an appropriate tx if required.
I have a friend (who is a nurse), and she is very much against my decision. She believes that unless there is at least some confirmation that it is cancer, I should do nothing. But it's not her who would have "live it" everyday and wonder all the time.
I'm also going to stay by my initial request to have prophylactic MX on a healthy side. My BS didn't see it necessary at the time, wanted me to heal quickly to start chemo. Now they say that risk of getting BC in my healthy breast is very low. But I got another onc to look at my situation and his calculation of getting it on the other side for ILC it is still around 7%. So why take the chances?
Did you have any trouble convincing your dr to do double MX?0 -
I am a 34 f and will have lump removed and reduction. Was in for surgery when dr. did biopsy, thats how they found ca. Had 2 neg. mammos and 1 neg ultra sound before
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I did face some resistance from the breast surgeon regarding BMX. Even though my gut told me to go for it, I tried to approach the decision making process academically as well as instinctively. I read the stats that survival is them same for LX +rads vs MX (this was last summer - before the study that found a survival benefit to LX + rads was published). After the LX, I just couldn't get comfortable with the thought of keeping the breast. Now mind you, this was my second cancer. My colorectal polyp was only stage 0 but I was also only 30 at the time. My dad is in his 70's with no cancer but his mom died at 39 of "liver" cancer - no one knows if it was a primary or metastastatic from another location. Why did I want both breasts gone? A lot had to do with screening - mammos had missed my easily palpable lump for years (thanks to my OB/gyn for finding it!). I had already had three benign lumps removed from the "good" breast over the years. All in all, I had my reasons and while she didn't agree with me, my breast surgeon did what I wanted. The good side turned out to be benign with fibrocystic change while the cancer side had another tiny invasive tumor and multiple areas of LCIS. I think those areas all would've been taken care of by rads, but we'll never know. My breast surgeon was shocked that there was another invasive tumor in there. I would never question someone else's treatment decisions and you just have to do what you think is best for yourself. Even with the extremely aggressive approach I've chosen with a low-risk, grade 1, stage 1 tumor, I don't get a guarantee that it won't come back. No one does.
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I was diagnosed with ILC in Oct. 2012 and am finishing chemo next week and starting radiation in June. I am post reconstruction and need some answers about DIEP. I don't have enough belly fat to put me back to the size I was B4 BC and I would like to have at least that!!! I have mid tummy fat but of course the part used for DIEP is under the belly button. Any suggestions or info about grafting along with DIEP to increase size or anything else?
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Scuba, I don't know, since I have not had recon. I am sure the ladies in the recon forums might have some answers for you, if you don't get one here.
I have heard of people getting a flap, often a lat flap, AND an implant together. There are also surgeons who can do hip flaps, where they use your love handles to make boobs from. Whatever you do, get the best PS you can find and ask lots of questions.
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Scuba, I had DIEP reconstruction at UNC. I was a D, but the doctor there told me I would be a B following surgery. I was a size 14 and had plenty of belly fat, so this didn't make sense to me but I went for it anyway. Unfortunately, both my flaps failed. I went to several different surgeons but everyone told me all I could do was an implant with a lat flap and could get to a B or small C. I really didn't want implants, so I contacted the Center in New Orleans. They were able to do a GAP flap (hips) and get me back to a D cup with all natural tissue. I am very happy with my results, and I have very natural looking and feeling breasts.
It was important to me to look like I did before cancer-- I don't want a life long reminder of everything that was taken from me.
Good luck with whatever you decide, and take your time to look at ALL your options. I rushed my decision because surgery was the first step in my treatment and I wanted the cancer out ASAP.0 -
HI, just read through many pages to try to catch up! So much going on!
For BB, just another view re mx as I know it's a very hard decision, unimx vs bimx. I had a left unimx. (lumpectomy wasn't an option as ILC was multifocal.) Breast surgeon and onc were very persuasive about keeping the healthy right breast saying that with MRI's the surveillance is very good and if anything arises it can be caught early. My onc says that latest research shows that ILC is no more likely than IDC to recur in contralateral breast.
From an emotional point of view I am mixed. I am grateful to still have one breast for all the reasons why any of us liked having breasts. I am hoping and praying not to have BC in rightie in the future, and if not, then I've had her along for the ride (still works in the intimacy dept.) That's the good part. The hard part is being assymetrical from a practical point of view, and I stress the yearly MRI's, etc. On the other hand, I've heard of women having recurrences in their mastectomy sites, so even that isn't any guarantee. There are times when I also wish that I'd just had the bmx, but other times when I'm glad that I didn't. While I'm writing I'm thinking that I'm probably no help at all! Just sound confused... well at least you can see the thought patterns. Ultimately, I'm happy with my decision and know that I can do the other side at a later date whenever I'm ready if I want. Incidentally, I haven't done reconstruction (yet) and not sure I ever will. Doing ok w prostheses and wanted a breather from medical events, even reconstruction (had to have a hysterectomy three years earlier.) Has been a journey in self-acceptance. I'm fortunate that my husband is cool with whatever I decide; I can imagine that this would be harder if it all creeped him out. Maybe biggest irony is that he is a plastic surgeon who routinely does breast reconstructions. I joke that I'd go for the facelift and lipo before the new breast anyway:)
My father also had prostate cancer. And I grew up in eastern Pa, pesticide heaven. Mom took DES while pregnant. Hard to tease it all out, but wish I knew.
Love to all, S
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I think sgreenarch's post did a fantastic job of describing the decision making process with this nonsense (the cancer is nonsense, not her post). You could argue for or against any given treatment /surgery til you're blue in the face and no one but you will ever get to the "right" answer. Listen to your doctors (preferably at least two different opinions), listen to your family, listen to your gut and once you're on you're way, don't ever look back - and don't let anyone question you once the die is cast. Make peace with your decisions, your body and your new normal the best you can.
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Amen, lekker!
Shari, great to hear from you again! Interesting that your hubby is a PS. I think I'd go for a facelift or other rather than a boob job (recon), too, if I had had a MX. I cannot even begin to imagine the amount of surgery that recon entails and lord knows that's not something I would even want to go through. Even with the LX, my breasts are noticeably two different sizes now (righty is an A and lefty a
. I just wear an insert to make up the difference with righty. I'm ok with that.
Hugs,
😊 Amy0 -
Thank you for your insight ladies. Over the weekend I met with a friend of a friend who had a unilateral at 35, that was 5 years ago. Her main reason for a unilateral was that she had intended and hoped to have more children.
She gave me her pros and cons, showed me her breasts and let me feel the reconstructed side so I'd have an idea what it would be like. Now that she's 5 years out, she said that gravity is effecting her natural breast and it's difficult to find bras that fit well. I asked if she had to do it again, what would she do. She said bilateral.
I realize this is a very personal choice, but hearing the decision-making process from others who have already gone through the experience aids in my decision-making process. It is a difficult decision and one that I really wish none of us had to make, but ulitmately it's about being healthy and comfortable with our own bodies. I'm becoming more and more accepting of the idea of a mastectomy, either BMX or UMX, even though that wasn't the original route I thought I was going to take.
I see the plastic surgeon this morning and will hear what he has to say and then make a decision. Sentinel Node Biopsy is on May 23 to determine node involement, if any.
Right now I feel like a puzzle with all sorts of missing pieces that can't be put in place. If anything, this is a lesson in patience.
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Wow! It took a long time to get caught up on this thread! Nice to see it so active!
I had a BMX by choice after multiple mammograms and ultrasounds missed the big wad of ILC all through my right breast. I just didn't feel that I could trust screenings. LCIS was found on the left side, so I feel that I made a good choice.
I still had to have radiation due to the size and location of my tumor, which was multicentric and basically in all quandrants of my breast. I was not given an option skipping rads, but tolerated it pretty well and ran through treatment. It has been almost a year and a half since I finished and I still have significant issues with tightness and pain on my radiated side. Now that I am in the midst of TE hell, it is even worse. I have resumed swimming and TRX classes in an attempt to stretch things out, but am not really sure if it helps or hinders.
My exchange date is June 7th and I have been dreaming about a day without TE's. Of course, yesterday I talked to a girl who had recon post-rads and her exchange provided absolutely no relief. Grrrreat.
BB, I have found it to be a lesson in patience and giving up any semblence of control......neither of which I do williingly or gracefully. Sigh.
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So, I just got off of the phone with Dr. Wong, herbalist from NYC who helped Ann Fonfa (Annie appleseed project) keep her mets away with lobular cancer. I could hardly understand a word he was saying...LOL
But, he said he has helped thousands of women successfully, but that Lobular is a little harder to cure. He does say metformin is a good tool. I will let everyone know how well our visit goes and if the herbs help me...0 -
Hi momand2kids and the rest of you wonderful people,
I am wondering why so many of the ILCers have had MX when their pathology is early stage, grades 1 and stage 1. I have had 3 re-excisions (removed aerola and nipple complex to get no risidual cancer and am stage 1 but grade 2 and BS still highly recommended breast conservation. I was so torn between lumpectomy and MX but now as I have gotten more used to a breast missing some of itself, I am not so sure a BX would bother me any more. I also feel stuff in my good breast and recently had a mamo and ultrasound which showed nothing. We know how tricky ILC is to find which has me super worried. I also had an MRI in Feb before my 2 surgeries wihich showed a clear right breast. So what am I worried about??? The pa IN BOSTON was very patient with me and said that they would be watching me closely and that the MRIs pick up where there is extra blood flow to the cancer which would show up if I had any more crap in either breast.(yearly followup). Still, I am now thinking that I should have gone with a BX to avoid worrying and thinking about what if, what if!! At the time of my DX I couldn't even remotely think of losing my breast. I don't know if I felt the same stuff in my good breast before or not and just concentrated on the definite pea sized lump in the left one. Oh my, what a pickle! I am scheduled to get my mapping for rads done on the 14th and wonder if I should go back to the doc. for a clinical exam on the good breast or just rely on their reconnendations. So many of you report finding the crap in the good breast when it was removed profalactically. So confused, any suggestions!??? I am sure you will say whatever makes me feel comfortable but I'm not sure what that is any more!!
Also, do you ever eat stuff with sugar or are you all really careful, a treat once in a while??? sugar is the enemy and fat so I hear with er+
beachwalker54 (marlene)
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Marlene, my ILC was large and positioned in a way that made MX on that breast necessary. I chose to have the pther removed at the same time. The docs could find nothing wrong with the "good" breast, but pathology showed LCIS and a bunch of other pre-cancerous stuff. I have no regrets.
As far as sugar, it is not sugar itself, but blood glucose that you need to worry about. So, you need regular exercise, a decent weight and you need to cut white carbs basically and switch to high-fibre carbs. In addition to that, I eat very few sweets, except for 70-75% chocolate.
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Is anyone familiar with the following blood tests...Clinical chemistry and CBC? Dr. Wong wants me to get this done before I see him...Thanks!
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OK, the CBC is a standard blood count panel. My doctors do those every 3 months, and they also did them twice for each chemo cycle. A good doc can tell a lot from a CBC.
I haven't heard the other term before, but when I looked it up, it sounds like the tests my docs run in addition to the CBC: kidney and liver function mostly, but also serum calcium and the like.
The tests are to get a basic read on your general condition.
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Why is lobular harder to cure?
I so do not want to go back to being the miserable woman I have been for the last few months due to letrozole........so really looking for something that gives me protection and QOL......
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Marlene, because it's so tricky is the main reason for me. I'd already had a biopsy on the other side eight years before the BC was found, thankfully it had been benign. With three generations of breast/ovarian cancer, although not together, I wasn't taking the chances knowing ILC is sneaky and that it likes to hit the other side at some point. Plus, I would have a nervous breakdown at some point with the continual watching and screening and biopsies etc.
Not if I had a choice. My preference was to not have rads if I could help it either.
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Thanks! Are these tests a family doctor can run?
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