Team ILC Warriors
Comments
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i opted to be flat and fab.. for me reconstruction didnt seem to fit who I am.0 -
Juniper, welcome!0 -
Dear Junipergirl:
So sorry you've been through so much. Good for you for persevering. Sounds like you've taken more control and have gotten better care. The oncotype is for exactly patients like yourself, and will help you, along with your oncologists, decide if chemo is warranted or not. There are cases, if you have a low oncotype, ie, where the risks of chemo actually outweigh the benefits. It is scary to think you're not 'doing everything' to fight the cancer, but what I learned is that you have to use the medicines that are available to fight ILC wisely. I had a 17 oncotype and in my case, three oncs strongly recommended against chemo. They said that the hormonal drugs would do the most good. Chemo was overkill. I hope they are right, there are no guarantees, but you can only do the best you can given the info you have. If you have doubts or questions, I suggest getting a few opinions, at different cancer centers. If they all concur, you can feel more assured in your decision. Very hard to consider all the info and make decisions.... wishing you luck and support.
Hang in.0 -
Juniper, you have come to the right place. Welcome.0 -
Lynne,
Thanks for your September response. Geesh, how did that time go by?
How did you decide to have chemo and where did you find the expertise that you trusted knew enough about ILC?
I had mastectomy end of June. 0 nodes involved. No oncotype done as far as I know.
I have completed radiation and healed. I see oncologist in the morning re: hormonal treatment and to answer my many questions.....maybe prophylactic mastectomy on "good" breast. After all, I had three years of mammos and USs with conclusion being---just calcification. And this last mammo only caught one "suspicious" area whlle I actually had three areas of ILC, one 2.3cm, two pleomorphic. And with the cancer left in my chest wall muscle....I do not want to go through all this again. I would rather lose my one beautiful breast. (At 64 I still like my breast. Looks 64 but I like it.)
Jojo, What you said about cancer seeding even with no nodes involved....no one has mentioned this to me but I wondered.
Antonia, Thickening of stomach wall. Sounds scary. What has been the outcome? CT found two suspicious things in my body too: one on my skull and something "non-cancerous" in one lung. Skull is going to be "watched." Still creeps me out and I don't trust first opinions anymore. Will follow up after dealing with the BC plan.
HollyBoo0 -
Hi. I decided to post some good news. I know how important it was for me to read good news, especially during those first few months, years. I want those who are newly dx to hear good news, too...
Had a clean mammogram/ultrasound today. How I love those words, 'All clean!' My BC was discovered on a mammogram, so though I know it can miss ILC, in my case it found them. An MRI found more, but the mammogram was the hero (or heroine) in my case. No lumps, no family hx, etc. I have MRI's every June and mammograms every December and at least feel well-watched.
This all started 3.5 years ago. It has been a journey, but I'm still here, religiously taking my femara, trying to eat healthy, live healthy, exercise, etc., and watching my kids grow up. I know that BC can come back at any time and that its all a crap shoot, but we are all going to die one way or another, and in the meantime, we need to keep living. I remember the desperation and fear that I felt 3.5 yrs ago in the same room that I was in today. Amazing to hear different, wonderful news. I want you newbies to know this. May we all be blessed to only hear good news and to enjoy good, meaningful lives.
Shari0 -
sgreen--
what great news! thanks for sharing--- I also want to add to newbies---I am now officially 5 years past my dx and lx surgery--- still on femara-but only for about 4 more months. Chemo and radiation are distant memories and I don't spend too much time thinking about bc---- this too does pass.
Congrats and hugs to all who are at the earlier stages of this journey0 -
Shari,
Awesome news! I'm so happy for you! I haven't posted on BCO in months but I've been following everyone's stories closely. Love, love, love hearing good news!
Amy 😃0 -
To Sgreenarch and momand2kids -- That is awesome news! CONGRATULATIONS and thanks for posting!! I am new-ish to this site and still sort of early into my treatment plan. Had 2 surgeries - lumpectomy and re-excision, but the plan has changed -- those didn't work, so now the big one (BMX & ALND), and reconstruction? Plus maybe radiation and who knows what else after they do the ALND.
You give us HOPE!
Happy Holidays all!0 -
Shari and Mom
Thank you, I love hearing that! A question for ILC ladies: did your MOs consider the fact that your cancer was lobular in formulating any treatment plans? It seems like all BC treatments are fairly standard. However, I did read something that suggested that drugs like arimidex nd femara are better than taxomifen. Did your MOs say anything about that? Just wondering if us ILC gals need anything different.0 -
hi smrlvr!
Well, for me when I had my first consult with my BS thinking I'd be going straight to surgery, he recommended doing the OncotypeDX test (http://www.oncotypedx.com/). Normally, women go straight to surgery, then have this test done and then base the treatment on that (chemo vs. hormonal therapy). This test is only for those who have invasive cancer or DCIS, and for those whose tumors are ER/PR+. This test predicts your future rate of (distant) recurrence. Mine was 10 on a scale of 1-100, which is low. So, based on that test I didn't have to have chemo.
My BS also offered a different approach - since my tumor was medium-sized he suggested doing pre-operative hormonal therapy to try to shrink the tumor. Everyone said that because my tumor was hormone sensitive, it would respond well to hormonal therapy. MY MO recommended Arimidex over Tamoxifen -- according to her she claims it is more effective. I was on Arimidex for a few months before I started having really bad joint pain and stiffness. They then switched me to Aromasin and I haven't had any SE's at all. I had only a partial response to the drug. My tumor shrank, but not in overall size. Instead it shrank more like swiss cheese, so that made it difficult to get good margins during my lumpectomy.
But, I'm still on Aromasin and my BS says it is working and it will help fight off any cells that might travel to other organs. As you might know, lobular cancer has a high risk of spreading to other organs. So....I'm glad that I've been on it this whole time especially since my lumpectomy and re-excision didn't work. I'm having a BMX and ALND next.
But all this being said, each person's treatment plan varies so much. I'm hearing more and more these days that treatment should be based on your tumor's molecular biology. The Oncotype is one of these new tests that can help in planning. But of course it all depends on where you're getting your treatment and what guidelines they follow, too....
My particular treatment plan is anything but a standard approach. I'm a real oddball - so far haven't found any other women who've done pre-operative hormonal therapy. I've love to find others out there who have!
Sorry I'm so long-winded. I hope this actually answered your question.
Take care!0 -
bc101 - thanks for sharing your story. Are you having chemo? I didn't have an oncotype test. I think once they knew it spread to my lymph nodes there was no question about chemo. When they put you on arimidex were you post menopausal? I was told by my 2nd opinion doc at Sloan that you need to be in menopause to take arimidex. If that ins true then I need to be in menopause when I am done with treatment. Also, is aromas in the same type of drug as arimidex?0 -
smrlvr,
No chemo for me - mainly because I scored low on the Oncotype, so that's what they went from. I only had a few micromets on my sentinel node. Yes, I'm post menopausal and have been for quite some time. I thought I read somewhere that you should be for at least 5 years to be on these drugs, but not sure about that. Yes, Aromasin and Arimidex are basically the same type of drug and can be switched with no problem. Just depends on how you react, side effects, etc. to one or the other.0 -
bc101, sorry about the sucky news, but better safe than sorry was my approach.
smrlvr, my doc was in charge of the Greek arm of the study on AIs vs Tamox. When I was DXed, the study was not yet published, so he could not tell me about it. However, he was very supportive of the idea that I should yank my ovaries and go on an AI, which is what I did. He was also supportive of my insistence on BMX. He did say that the studies did not show an advantage, but he also said that with advanced lobular disease and my young age (defined as under 50 at dx), he completely understood. I had had mammo, u/s, MRI and CT before surgery. None of those picked up the 7 nodes or extensive LCIS in the "good" breast. Suffice to say that I have no regrets.0 -
Momand2kids; Congrats on 5 years. I've followed your story as I'm only a year+ behind you and you give me hope. Heather0 -
so glad I could help----
I am at home now with really strange back pain in my upper left back--- got an appt to see the pcp this afternoon--- I hate that my mind goes to all sorts of bad places when I have these seemingly small health issues.... never would have given this a second thought before bc!...
hope you are well.0 -
Hi ladies just wanted to stop by and wish everyone a Happy Holidays.
Shary0 -
Thanks Shary! How are you holding up?0 -
Good day ladies
. Met my MO this am. Oncotype came back at 22 and he stuck with the no chemo. I got to leave with a prescription for Tamox though 
. Waiting for rads to start. Lonnnng wait. Glad to be home with my fur-girls - it's freezing out here today !!0 -
Just popping in to wish everyone Happy New Year.Thanks for being here,
Kay
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Likewise. Onto a good 2014!
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Happy New Year all... so looking forward to 2014. May will mark 5 years since end of treatment and the end of femara!!!! Cannot wait. I wish for clear scans and great health for all of us this year.
hugs all around!
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Here's to a healthy and peaceful 2014!
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Happy New Year to all ILC Warriors! May 2014 be HAPPY, HEALTHY and PROSPEROUS!!!
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To,all my ILC sisters, Happy New Year!
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Happy New Year to all my ILC Sisters, here's wishing us all a Happy and very Healthy New Year.
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Good luck to all the ILC warriors in 2014. I managed 9 years of being NED after Chemo, MRM, Rads & 9 years of Femara for extensive ILC er/pr++ Heru2- in my L breast in 2004. I'd pretty much forgotten about BC for the past 5 years but it's now returned; mets to my liver. Hoping Chemo can have better impact on the mets than on the original - I need 4 more years, at least, to get my youngest through high school.
My advice - don't bother with reconstruction, eat well, exercise well, live well as warriors. Retrospectively, I should have been a bit more consistent in seeing my Onocologist, not just my local doctor for check ups. Use all the emotional and physical support available, a strong warrior knows to seek help when vulnerable. Always hope for the best outcome and read the long term survivor stories not the old prognostic statistics.
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hi Fitzy
So sorry to hear you have developed liver mets - but I reckon 9years is a great result from a 3b staging - I hope your chemo is still doable and kicks those liver mets to the curb for another 9years and then some
I have my first checkup in 6 months with my BS and am interested to read your comments on no recon as that is very much hiw I feel at present - even thou DH feels otherwise !!
Best wishes for 2014 - keep soldiering on
NC xx
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Fitzy - sorry to,hear about the mets. You will be in my prayers. Just curious, why would you recommend no reconstruction? I am thinking of going that route, but I am 50' so I don't know...
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Fitzy, thanks for your advice. I am hopeful for you. Though it must be scary, the people I know who've had recurrences, say on some level it is more manageable as it is the devil we know. I know this may sound strange, but they are all doing well, stage 4 women included, treating this as a chronic situation.
I agree, too, with your recommendation re reconstruction. I was only 49 at dx, and just couldn't handle the idea of trying to focus on survival and reconstruction at the same time, so I tabled reconstruction back then. Now it is 3.5 years later and I am doubtful that I'll ever do it. Ironically, I am married to a plastic surgeon who spends most of his days doing breast reconstructions, yet he never pressured me and seems to love me with or without a reconstructed breast. I feel very fortunate about this and also understand that having one or no breasts may be very rough for some women and some marriages. I don't even hold this against the men; breast cancer has many victims, and they suffer loss, too. Not as great as us, but they loved and enjoyed these breasts over the years, too, and non-medical people may have a hard time with the absence of something they see as normal. Ultimately, a strong marriage/partnership might be able to work around this and it is up to the woman. Despite my husband's reassurances, I spent the first few years really hating my scar, my assymetry, my physical situation, feeling very alone, actually freakish, but still didn't want to undergo yet another procedure, and on some level was (illogically) scared that reconstruction might make a recurrence harder to detect. Then, about a year ago, I underwent a transformation in attitude. I think that the scar project images, http://www.thescarproject.org/ helped me. Somehow, seeing all these other women helped me accept myself and think, well, this is just who I am right now.I didn't choose to get this disease, and I don't need to reconstruct for the wrong reasons. I know this may be more appropriate for another thread, but I feel close to my ILC lady friends and thought to expand on what Fitzy said. Thanks to her.
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