Team ILC Warriors
Comments
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Claire, I hope you don't mind that I mentioned your experience. I must say that I was encouraged when I read that LX and rads seemed to do a thorough job.
I wonder ... Has rads even been given as a prophylactic alternative to PMX? My next oncologist appt is with my MO, I might ask her. Not that I want this done! ;-). I just wonder if it gets rid of hyperplasia and in-situ cells
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My friend Gemini- I don't think its the 'best' choice, it is the best choice for me right now. My original BS and oncologist calls it extreme. And I do think that rads for ILC is what is needed. For me it is more 'where my mind goes' and I don't want it to go there anymore. I am young and plan on another 40+ years here I don't want to worry as much for the next 40 years and I also feel like without having chemo (not recommended) I am doing all I can. My tumor was 2mm, not cm but mm.. very small but I also had LCIS and DCIS in the same area. I also had a mammogram and was told that they couldn't tell me there was nothing there because do to density they really couldn't see. I cant live with that. So that is my explanation why for me personally its the best thing. I am excited about but don't think for a minute I wouldn't keep 'my girls' if I could. Either way it sucks..it sucks big time!
I also had my ovaries removed and do not take the tamoxifen or AIs. Again what is best for me. Extreme? Maybe so but for me its what makes me sleep soundly at night.
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Lemon, I know you've been struggling with this for a year, and I am glad you've come to a decision that puts your mind at ease. :-) I was actually reacting to a post written by someone else to Genny that implied lumpectomy isn't a wise choice for her. LX and rads has not been proven less effective than MX (a study published last year even suggested a higher survival rate than MX).
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Lemon, how were you able to,get your doctors to,agree to,remove your ovaries? I really want mine out to rid my body of estrogen, but my onc is against it....an unnecessary surgery. My BRCA came out negative, giving him more reason to be against it. I just know that ILC likes the ovaries and I would feel better with them gone. Actuallly, with uterine cancer a side effect of AC and tamoxifen, a hysterectomy would not be a bad idea.
Gemini, my "good" breast had hyperplasia also. No regrets here.
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Thanks Gemini, I will be glad when its all over.
smrlvr, hi, I refused to take the tamoxifen so my onco said either shots to stop the ovaries or remove them. I contacted my OBGYN she was happy to help me out. I ended up with 2 large cysts, one had also burst so she ended up taking everything out. No cancer found in pathology which was a good relief. I was 44 and no where near menopause with estrogen up near 100%. I am also BRCA negative. My friend is having a total hysterectomy on Monday, she is 41 and also has cysts and in early menopause. If you really want it talk to your OBGYN and see if he or she can give you the pros and cons then take them to your oncologist. I know some women here on the boards have done it as a precaution and some have had uterine thickening from the tamoxifen and then did it.
I felt like I had no control when DX, everything just happened and I just did as told. Now I feel in control of my body and my choices, feels good. I get some flack on the boards about not taking a AI with having had ILC but I just feel I have given enough already. I will have my estrogen levels checked in a couple weeks, cant wait to see a small number! I hope you get what you want, you have been though enough with this dreadful disease. XO
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Gemini, i don't mind you mentioned me at all. My oncologist exclaimed over my pathology post BMX and told me I had done the right thing in getting rid of both breasts because of the hyperplasia that didn't show up at all in any other tests/scans...and the tendency for ILC to be or become multi-focal. So I am happy as I can be with my foobs.
Claire IN AZ
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I also don't think there's a "best" choice. I would have absolutely done a lumpectomy if it had been an option. Once I knew it wasn't, I did decide to do a bilateral MX because of family history, but it wasn't an easy decision -- and both my BS and RO supported that decision. My guess is that the apparent slight edge in survival rate with LX is because LX is almost always followed by rads, and MX isn't -- there's a suggestion that rates of LX plus rads and MX plus rads are equivalent if other variables are held constant - like grade and nodes (tumor size seems a less reliable indicator).
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Hi ladies, I haven't been on this thread for awhile, it somehow got removed from my favorites. Thanks for all your input and I guess I'm more confused than ever, so I need to pick your brains a bit. Here's what's going on for me now. A quick recap.
Dx on Feb 14 with ILC following core biopsy of left breast and lymph node. Path report reads Tumor size: at least 1 cm. Grade 1 pT1b.
Lymph node pT1b and it states metastatic lobular carcinoma with extranodal extension.
My oncologist sent me for a metastatic work up, everything fine in the right breast with the MRI but the report does say bilateral nonspecific enhancing foci, but then goes on to say no evidence of malignancy. Category 1: negative
Final clinical stage; T1N1M0
So my surgeon tells me she wants to do chemo 1st and sends me to the oncologist. She spent a lot of time with me and answered the questions I had at the time but that was on March 5 and I have a million questions since. Here is my tx plan: Cytoxan and Taxotere q/3wks x 6 rounds, 3 weeks off then lumpectomy, 6 wks off then 6 1/2 wks of rads.
I had my 1st chemo on March 14, I will see the onc PA next Wed and 2nd tx the following Friday. I'm trying to get all my questions written down for the Wed appt.
I do understand my dx, here's my problem. I've had 15 mammograms with the last one being last September and nothing but "dense and fibrous" was ever found. It was found with the U/S in the diagnostic workup after I noticed "dimpling" on my left breast and called my PCP. It's very evident when I put my arms up and flex. But there is a slight dimpling on my right breast. I pointed this out to my surgeon during my 1st visit and she acknowledged it but it seems to have been discounted because the MRI said right breast negative. They did not ever do a U/S to my right breast.
Since then I have seen so many posts from women that had a prophylactic mastectomy in the unaffected breast only to find that it had CA as well. So if I'm getting chemo 1st and there are CA cells in the right breast will that be enough? What does nonspecific enhancing foci mean?
Like I said I'm trying to form intelligent questions for Wednesday, I really like and trust all of my docs but I'm not sure I'm confident with just a lumpectomy. Should I go and get a second opinion from another surgeon? All I do know for certain is that I don't want to be going through this again in a few years just to save my not quite A cup boobs. I know this is long but I wanted to tell the whole story, you ladies are so knowledgable, thought I could use your input.
Thanks, Genny
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Hi Genny,
(I'm laughing about your A-cups....that's how I felt about mine! I saw a therapist for the first time yesterday who talked to me about the loss I must feel for them. HA! Out of all the things I'm going through mentally, loss for those sagging, puny, sorry excuses for breasts is not one of them.)
Back to your questions....it sounds like you're formulating good ones! I had the same experience with mammograms, including the one right before my core needle biopsy which still showed nothing. My MRI showed the following on my right breast: "RIGHT BREAST NUMEROUS ENHANCING FOCI, WHICH ARE LIKELY BENIGN. HOWEVER, GIVEN THE EXTENT OF LEFT BREAST DISEASE, BIOPSY IS RECOMMENDED." I did not have the option of a lumpectomy for my left breast. Given the MRI findings and what was going on in my left breast, I decided on a prophylactic mastectomy on my right side. No evidence of cancer was found on my right side's pathology, but I haven't regretted it for a minute. I wanted to never have to think about cancer in my breasts again. I am definitely a better-safe-than-sorry person, so this made sense for me. (Heck, my MO had to talk me down from wanting my ovaries removed -- I'm still not 100% settled on that, but I told her I'd keep them a year for my bone density, then we'll talk.)
Having said that, it is a VERY personal decision. There is no "one size fits all" answer. You sound like you've done your research, so you know how sneaky ILC is. Whatever you do ultimately, it sounds like you'd feel better getting a second opinion, which is never a bad idea -- that would be my vote.
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Every thing boils down to what they feel is the best choice for themselves. I'd gladly give up the anatomy than live with the risks with ILC and being checked all the time, mri's and biopsies, etc. This hadn't been the first time on that score for me and I aimed to make it my last. Far too stressful for me. All the best to every one!
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Genny, I'm like Bec and I am a worrier, so BMX was best for me. You are a grade 1, so you may have less chance of getting it in your other breast? I don't know he answer, but it may be another question to ask.
Bec, I wouldn't miss my ovaries, either. They talked me I to keeping mine, also, but I want to revisit that too.
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Thanks, Beck,Galssal and smrivr, I think it's the grade 1 thing that's bothering me the most. I mean if it's so slow growing how did it get into at least 2 lymph nodes noted by ultrasound and then they tell me it has extanodal extension which means it's broken out of the lymph node, which is why they wanted to do chemo first. Oncologist told me it's been there a long time, way before my September mammogram. The diagnostic mamm only showed a slight irregularity, just enough to get me the ultrasound. The Onc said at cancer board they agreed that lumpectomy was the way to go, but I'm getting more uneasy about it every day. I still have 4 months of chemo before I have to make a decision, I just don't understand how they know if it's somewhere previously undetected if the chemo has killed it? They really haven't presented mastectomy as an option, but I know that I do have that option, and if they do 1, they'll do both.
Does anyone know of a thread with women with ILC opted for lumpectomy, only to need mastectomy a few years later?
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Genny- I was Stage 1 but grade 2, 2 mm in size, so,so tiny but I had micro mets outside my lymph nodes, 2 of them! How? I have no idea. My 1st BS wouldn't even discuss a MX, I wasn't given an option. Its taken me a year to make my decision. I was also not offered chemo due to my age and stage. I did my lumpectomy and radiation. I spent a lot of time educating myself, the women here were also great teachers and real life experience to me beats any text book. I also found a BS and PS I love and trust, that made a huge difference to me. My originals didn't and couldn't offer the care I receive now.
Oh and I did have them take the ovaries back in Sept. I do not regret it at all, in fact they took everything. ILC loves those organs and I wasn't taking a chance.
I love my D's, I guess due to density mine don't even sag, they look good. But not worth my life or going though this again and putting my kids and hubby though it. I cant do that. Its such a personal decision, it will come to you and you will know in your heart that you have made your choice. I don't know what I will look like after my surgery nor how I will feel but I know I am fighting to stay alive. I wish you peace and strength and with that it will come to you, I promise.
keep us informed, we care.
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I do not have a uterus but do have ovaries, I'm 56 and don't need them. An oophrectomy would be no big deal, that'll come later, I'm going to talk to the PA on Wednesday, maybe she'll help ease my mind. I have mets outside the node also. 2 that they could see on the U/S
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Genny, for what it's worth, when I had my planning meeting with my surgeon, I asked him why we didn't do chemo before surgery. He said that if we did, it would work so we never would know what my stage was and exactly what we were up against. I went into surgery with a diagnosis of three IDCs under 1 cm and 2 palpable lymph nodes. Surgery pathology was 4.8 cm ILC and 6/18 lymph nodes.
I agree with lemon68...the right thing for you will come to you; you will know.
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Genny, I had to have a reexcision after my first lumpectomy because the margins were clean but close. Before the second surgery, my BS told me that I could opt for MX. Which confused the hell out of me, having an option. After pressed, she went on to say that she would really like to see me have rads (I had clinically negative nodes, but micromets). She said that an MX wouldn't warrant rads in my case. So that kind of cinched the decision for me to go the route of LX+rads, and we left it that I could always choose later to have an MX. So far haven't gotten to that point. I know that my options for reconstruction aren't the same now that I've had rads, but I was and am still OK with that decision.
I have not seen any thread that you've mentioned, Genny. Again I bring up Claire (are your ears ringing? ;-) -- she had a PBMX after LX, and Lemon is opting for that as well. But I haven't seen any accounts here of recurrence after LX. (I do know this much -- if ever there would be a recurrence in my treated breast, MX is the only option, and rads can't be repeated on that side.)
This probably makes things clearer than mud! But I do hope it helps. Like everyone has said, it's very personal, never easy, and I think getting a second opinion from another BS would be helpful for you to come to a conclusion as to the best solution for your situation. Please continue to ask questions and share concerns here -- it's the best, most supportive and knowledgeable group around! When I meet women in real life who've had a history of BC, I find myself wanting to put a muzzle on because I'm such a know-it-all with everything I've learned here! ;-)
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Gemini- I wanted to LIKE your last few lines of your post.. made me laugh. We have come a long way!!! So proud of US!! XO
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Thanks Gemini and Lemon and everyone else everyone has helped me so much. I'm so afraid that I'm going to go through all this only to end up repeating it on the other side in a few years. And what about the MRI report saying nonspecific enhancing foci... couldn't that be CA?
I will know more I hope after Wednesday, I'm going to request an ultrasound of the right breast and if she says no I will go for a second opinion. I believe I should go with my gut and something doesn't feel right to me. Thanks again, I'll keep you all posted.
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good luck Genny!
I'm done with rads as of today! yay! Not too bad. Mostly annoying.
I've made a pact with myself to step away from worrying for a while, and that means stepping away from reading these boards, but I wanted to thank you all for your wisdom and support and I wish every one good health.
I'll start up again with tamoxifen shortly, and that's it for 5 (10?) years.
Best,
LoJ
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Lojo, best of luck to you...
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Lojo, congrats on finishing rads! I finished a year ago myself and started Tamoxifen a few weeks later. My MO said definitely for five years, probably ten, but in her words, "who knows what we will know in five years." Though I will likely hit menopause within the next few years and switch to an AI.
I understand your wanting to leave the boards ... May you put this all behind you and continue on a journey of health, peace, and happiness. :-)
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hello sisters
I was away from the discussion for some time due to many hectic things.
As I have mentioned before, I had single mx on left breast on February 28. I saw my onco two weeks back and after long discussions he proposed that we should do the oncotype dx test. He also said that I do not need radiation since mx was done. The size of tumor was 2.8 x 2 x1.6, so I was thinking rads most likely. We are still waiting for oncotype test results. He said that if they come low, we will start hormonal therapy right away and no chemo or rads. I was kind of nervous to think that no chemo? Btw, he also did not order any scans since lymph nodes were negative. I did ask him for pet scan or ct just for peace of mind and his response was that it would be unnecessary and if there is just a shadow, we would be getting all worked up.
Has anyone got the oncotype dx test done? Thanks a bunch in advance
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hi lojo,
Thanks for all the input and help you provided. Wish you all the best with tamoxifen treatment and healthy, peaceful time ahead
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socalmom -
I hear you. Sounds like you would be relying solely on the Oncotype test. I did not get that and I don't know if it is normally used with no other testing. I know that I am grateful for the PET scan I had which showed grade 1 endometrial cancer so I was able to get a total abd hysterectomy before it became invasive. Nobody really believed the bit of intrauterine fluid lit up by the PET scan would turn out to be yet another cancer, but on biopsy the cervix and the lining of the endometrium were malignant.
Thing is, it was not necessarily metastasis that came from way up in my breast tumor. The consensus is that it was probably another primary tumor. Of course anyone can have two or more primary tumors. I don't see how an Oncotype would cover that situation.
I would not worry about overinterpretation of a PET scan. Mine showed a bit of glucose uptake in a muscle where I probably moved by mistake and no one got excited. I would worry about missing the beginnnings of another primary tumor.
Sounds like your doc may be between a rock and a hard place, trying to treat but not overdiagnose. Hope my experience helps a little.
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thanks Christine.the oncotype test is specific to decide the effectiveness of chemo therapy only.
As I understood, they said no rads because we opted for mx and not lumpectomy, the size was less than 5 cm and had big clear margins. The metastatic work up was not ordered because of negative lymph nodes. I discussed this with 2 other oncologists who are family friends and they both agreed with the plan, so I had some relief but as you mentioned, I still wanted to get the tests done just to be sure. I will talk to my onco again this week and ask abt it.
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Socalmom - my diagnosis is close to yours but while I was node negative, I did have signs of vascular invasion. Even so, after an Onco test score of 16, three MO's said I should not do chemo. So I didn't. I often wonder if that was the best decision.
I just switched off tamoxifen (after 3 miserable years) and am on femara. A much better drug for me. Good luck with your decisions. Trust that you will make the right one.
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hi hipline, how did they find out about the vascular invasion?
We just got the Oncotype DX tests back. my score is 10, which my MO said is sure low and i dont need Chemo. I also talked with 3 more MOs and they agreed that for this score i do not need Chemo.
I am meeting my MO today and going to talk to tamoxifen treatment. I am again going to ask if i should get any scans done. i also heard that tamoxifen does give different side effects to everyone. I am worried about the mood swings, V dryness and sometimes depression. What made it miserable for you?
BTW, did u place the tissue expander during mastectomy or later? I am also scheduled to meet with plastic surgeon in few weeks. They didnt put any expanders during MX for me.
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SoCalMom, I am interested to hear what the PS says about tissue expanders for you. I did not get them placed during mastectomy either. Now I am doing rads and I hope my skin can take the expanders because I sure don't want to do a flap procedure. Recovery is too ling. I don't think it's for me.
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SoCalMom, great news about the low OncoType score! :-)
I'm not really miserable on tamoxifen. The biggest inconvenience I'm experiencing is hot flashes, but they started before I began tamoxifen, so not sure I can blame them entirely on it. I have plenty of friends who have them this bad who are "only" going through menopause. Vaginal dryness has not been a problem -- in fact it's better than before tamoxifen.
Do you need rads? Good luck on the tamoxifen -- hopefully you'll have an easy time on it.
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socalmom,
Congrats on the low oncotype! I'm back lurking because I'm dealing with lingering rads effects (skin damage). Hope you can avoid rads, though until the week after treatment, it really wasn't bad, and I worked throughout (wish I could take time off now!). I was on tamox for a month before rads, while waiting on test results. I'll start again on Monday. Some warm flushes - not really hot, and just in my feet/legs. Period was late (almost 40 days) and then heavy, but that was after I'd stopped for rads. Just had a second on schedule, so we'll see what happens once I start tamox again. Good luck, sounds like were about on the same page.
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