Team ILC Warriors
Comments
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Opps that post was supposed to be in the August chemo thread😛I let them know is was here, hi Rayna welcome over here and yea lucky me I got the sneaky shit!!!!!!!!! He if you think anything sounds good in my post will you also tell the gals I put it here, I have to go do my labs in a few. Hi everyone, I have not posted much here lately but I read them all. Hope everyone is doing well. Big hug's.
Shary🍁0 -
Gavinsgrandma: Sure thing, Hope everything looks good regarding your lab work.\
Rayna0 -
Rayna, I'm here, too.
. Had AC 😡😈today and feeling pretty crappy. Stomach a little better with new meds, but have a splitting headache (did last time as well. 😣). Oh, well! I did feel better the three days before round 2. 😏 Have a good evening!0 -
Martie: Hi, I guess I haven't looked to see who is ILC as well. I'm sorry your not feeling well. Its too bad you get a headache, I have never had a headache (knock on wood) but definately the crappy feeling. Its funny because the first infusion I didn't really react until day 4 or 5 and the second I felt crappy as soon as Day 2. And now, I'm feeling pretty good and know I have to go in 6 days and poison myself and feel crappy again. What a vicious cycle. heh?
Heh, is the Taxol for the HER2. Was your first DX ILC as well? and I notice first time you weren't HER2. That's crappy. How are you handling all of this with having a recurrence that was so big. wow. I hope your headache goes away.
Love, Rayna0 -
Martie, you and I are 1day apart on the same treatment, I had a headache also right away and lasted over a week, I dance with the devil tomorrow😕hope you have a good nights sleep and I will check to see how you are doing tomorrow.
Shary🌞0 -
Ladies:
So glad to find this board. I have been spending a lot of time on the AI Hormone Therapy board but really want to chat more with others who have been afflicted with the "stealthy maurader" ILC Breast Cancer. So, I am very glad to be here and hope that you will have me. I am of the opinion that whatever the side effects may be from my Anastrazol, I will not stop taking it because I will never take the risk of having my BC/ILC recur...it is too frightening and I will do whatever I can to keep it at bay as long as I can.
I have been reading everyone's stories and look forward to talking with you all. I just recently finished treatment and certainly understand how you feel if you are in the middle of it.
It is late now so I will sign off and go to bed...will check in tomorrow. Good to be with the ILC warriors...we have much to share and we do have, to my way of thinking based on my research, the most insidious form of BC...my oncologists have strongly warned me to be vigilant and very proactive in my followup and post-treatment plans and to never, never miss an appointment or a screening...ILC is too stealthy in its growth patterns to risk giving it much of a head start. My surgery pathology report showed my cancer was 2X the size that it showed up on the mammo, US and the MRI! That is what scared me...
Best Wishes to everyone.
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Easydancer, welcome! Yes, ILC is a sneaky bastard.
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Lots of discussion here about drinking and ILC. I also made the connection and have cut back considerably. However, this summary of research from the Journal of Clinical Oncology shows that the evidence is not that clear cut. I'm not trying to change anyone's mind about what they need to do personally, just sharing information that is available.
http://jco.ascopubs.org/content/31/16/19170 -
Easydancer: Welcome, glad you found this thread, I think it is important for each of us to a place where we can talk with those with the same DX. You are so right this type of breast cancer is really scary. I know my DX should have been made a year and a half sooner than it was and I think if it was I wouldn't have had the second lump that they only found by doing an MRI.
Love, Rayna0 -
Good morning Ladies, and easydancer nice to see you again and yes back in June shortly after I was Dx and told very honestly by my awesome medical team just how sneaky this cancer is, I felt like God just shined down on me with this thread and he gave me hope that I did not have to do this alone and that there were ladies out there that felt just like I did. I have a few family menbers and friends that thought that my choice of a BLM was way to extreme and my response was" you go and research ILC and you tell me then what you think" and you know what is so ironic last year I missed my 1 year mammo because I was bringing my Mother-in-law back and forth to Carson City for BC treatment, she was one of the lucky ones, very small 11/2 cm on the surface IDC, no node involvement. She had lumpectomy and 1 week of SAVI radiation. All the while I had this "michevious Maurader" which I have borrowed that term from Patti before😉lurking in my left breast and by then was probably already into my nodes which were all positive and still some that I am hoping the treatment will get and I also found out I have a few very small spots on my lumbar spine. So yea you really never know but I love this site and these threads and I have made many friends that I never would have and I have every intention of styling in touch. I love you all, we are knit together by spirit.
Have a great weekend and Happy Labor Day, Shary🇺🇸0 -
My understanding is its sneaky but also slow gowing and slower to spread or metastasize?
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Hi Amberella
That's is an interesting article I know i have seen before
The 3 key points are that the article still only
1. advocates moderate drinking as in no more than ONE standard drink a day ( not the size of glasses of wines we would probably have been consuming )
2. -ER positive cancers (mine is 100% ) would just LOVE a sniff of any degree of oestrogen that EtOH would offer to set it off again and that would immediately potentially counteract any potential good the tamoxifen and AIs would be doing
3. The report does not by its own admission separate out different cancer types -
As you rightly say. We all make our own decisions but we have to ensure we do not make sweeping assumptions or use reports such as that to justify reasons to start to drink again
ILC is sneaky and i suspect that report will have been based on at least 80% of its follow ups being IDC.
Be really interesting to see a report on EtOH and ILC only
JMHO0 -
Lilly, my pathology said Slow growing grade one yet 2 yrs ago showed nothing on mammo but iam sure it was there. Slow growing or nor not my 31/2 cm tumor invaded 15/15 nodes and more still positive and found it's way to my spine, so in my case I question just how slow growing it is as a matter of fact my PCP and MO call it a very aggressive cancer??????? Sorry I am not arguing with you, I am arguing with this Cancer😝
Shary🇺🇸0 -
Shary no i am confused.....we all seem to get different info......
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My oncologist keeps saying she doesn't expect me to have a recurrence even though my ILC is grade two and I had big cancer in three nodes. True, I had surgery, chemo and rads but I still don't know why she says that.
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Jeannie: Next time you see your onc ask her why she says that you won't recur. I would be thrilled to hear my onc say that! We are the same stage, but I am Her 2+ also. And I opted for no rads-had a speck of cancer in one node, and went for ACTH (the red devil). Just finishing up the Herceptin in October. I hope your onc is right!!
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Thanks for the info Amberella! My oncologist said one or two drinks a week are not going to make any difference in my cancer returning. I drink very occasionally (less than the minimum recommended) and did so before BC, so I'm pretty confident that alcohol had nothing to do with my ILC. I think it was something in my immune system as both my daughter and I have autoimmune diseases (I have Graves (thyroid) and my daughter has Type 1 diabetes). I worry for her all the time and hope that they have a vaccine in her lifetime to combat all these diseases. I've seen too many people on these boards who did everything right before cancer and still got it. Anyway, I didn't fight this beast not to enjoy life every now and then with a good wine or cocktail and dessert every once and a while.
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Dear ILC Warriors,
You women are mesmerizing. I have not been on the boards since May and I couldn't stop reading until the last darn page 39! Now I am going to suffer a bit tomorrow at work from reduced sleep. However, I will benefit from the warm glow of feeling connected, informed, supported, and not completely alone. I really thank all of you for sharing. I have been a laggard in educating myself about the details of tamoxifen and ovarian risks etc. I went through a big scare this summer at my one year anniversary from BMX with ovarian cysts and uterine polyps. Had to have 3 ultrasounds, an MRI, and a biopsy of uterine lining (I guess it was). All showed no signs of cancer. But now I realize how close the connection is between tamoxifen use and such issues, so I must research more. I have a followup visit in October. Gotta go, but glad I got caught up with you. Some of you may be interested in the thread I started about "Lobular contraindication for own tissue..."
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Thank you for your responses to my ovary removal questions, I do appreciate it although its been a months since I have signed in. When I sign into the forums it all comes rushing back, I literally feel my anxiety rise. It Sucks! I love to see other women finding this thread but I am also so sad others had to come.
Lily- how are things for you? I always feel such love when I see your name. xoxo
Momine same with you. xoxo
So I am due to have ovaries out on Sept. 19th. I am having serious doubts due to all the crap I am reading! Fear of heart problems, wieght gain, hair loss, brittle nails.. the list is endless. I just feel like its a lose/lose situation. Should I consider the tamoxifen again? I tossed them and feel very strongly about not taking them. I am seeing a breast specialist at the Cleveland Clinic now and he say they have to go. Just so torn. I dont have a history to know about heart issues so its a gamble but then arent all our decisions?
My next move in October is a 3D mammogram to check and see if our sneaky bastard has decided to show is face on my left.. I cant imagine the anxiety I will have that day. I feel like every doc I see thinks I am crazy. All want to put me on Paxil, Lyrica, etc... I am not taking any of them. I go into the Doc office and immediate anxiety. What do they expect after the past year? Similiar to coming to the boards.. My eyes fill with tears when I read what others are going though. I am not saying I dont have any anxiety when it comes to BC but i am not depressed. So, now I am rambling..... sorry
For those new to the thread Welcome, there is so much love and caring here I hope you find some peace in the boards, I dont know what I would have done without them.
XO Lemon
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Shari- thank you for sharing your experience. I didnt think after having the ovaries out I would need to take yet another drug. Why? If the estrogen is depleted do you have to do a AI?
Joelle- I am going to go and take a look at Annie Appleseed on FB and investigate more.
The more I read the more I dont want to do it. I have 2 tiny cysts on the left ovary that today for some reason are letting me know they are there.
I did also read if you remove just 1 ovary the other picks up the pace to compensate for the one gone! Crazy little trouble makers arent they? Again I know I already said it, doesnt seem like there is a WIN in it for us. the menopause symptoms I knew about were not scaring me so much its the ones I didnt know about. There is a website that freaked me out-
http://www.34-menopause-symptoms.com/
I know we all have to go though it but I had no idea how it effects the skin, nails and hair. I know it might sound vain but this worries me.
Lemon
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Hi Lemon
How receptive to oestrogen was your ILC.? That is an indication as to how well tamoxifen will work
Eg my cancer had a 100% affinity. Hence I am grasping T was both hands. It will be my best friend for 5 years or so then jumping to an AI
Best of luck what ever you decide
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Hi, Lemon,
Nice to hear from you again. I understand how you feel about returning to these boards. I have a pushme pullyou relationship with this site. I need to be with women who understand (and aren't sick of my BC talk like DH may be,) but on the other hand if I stay away there are times when I can just forget about BC for a while. I will tell you that as time goes on you'll feel calmer. Think about all of the BC survivors around you, in the news, etc. That really helps me a lot.
Re ovary removal, if you have further questions feel free to PM me. I can tell you that I had none of the horrid sudden menopause symptoms I read about during the year post ooph. I stayed on tamoxifen for another year after having the ooph on the recommendation of my onc. The change in symptoms came when I switched to femara (after having been on tamoxifen for 2.5 years.) With the AI came hot flashes and more joint pain, a rise in cholesterol level, etc. Not great but not unbearable. I am determined to stay positive (SE's beat a return of BC any day in my book) and try to find healthy ways to deal with the SE's. Your onc may recommend that you take an AI (depending on your specific situation, none of us are the same which is why advice from this site must be tempered) because estrogen continues to be produced by your adrenal glands even after menopause, in the form of aromitase (I think, you may want to look up AI's further from someone more expert than me.) Thus the Aromitase Inhibitors. And you are not vain, for asking. My hair is stiill nice (even with more hairs falling out post shampoo, but I think this would happen post-menopause in any case.) My nails aren't in such great shape but that owes more to too much holiday cooking than to any drug:)
Lemon, the first year is really hard, cut yourself some slack. Take xanax before any dr visits or scans. It is normal to be anxious. If you think about it, it is really PTSD to go back to the dr/scan place as that is where we had our original trauma when we learned of our diagnoses. Please think about all of those women who are survivors who are 3, 5, 10, 15 years out and more and believe that you will be one of them. You are hopefully doing all that you can to prevent a recurrence, and you can do well. But the medical events are hard. Wishing you hugs and luck.
Shari
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Lemon, I had my ovaries out AND went on femara (to block estrogen from being produced from adrenals and body fat). It was a bit intense the first 3 months or so, but now, 18 months later, I am mostly fine. I do have some slightly annoying SEs from the femara, but my weight is low and stable, hair, skin and nails are fine and other than a bit of joint pain and a few hot flashes, it really isn't all that bad.
I did worry about the possibility of heart problems, but we have absolutely no family history, whereas we have an extensive history of cancer (basically everybody gets cancer), so I figure that on balance, my risk of cancer is much higher than my risk of heart disease. Also, with exercise and proper diet, you can at least counter-act some of the heart risk.
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Lemon GREAT to see you.....in a nutshell women still need some oestrogen so once ovaries have gone we convert other hormones in to oestrogen, such as androgen, and AIs block this oestrogen from reaching cells, maybe you need to ask the question before the surgery?
The main thing i have recived from my PTSD therapy s how we expect ourselves to cope so fast when actually we need to process the experience and grieve all we lost ad our past selves, that takes time. It has helped me to be more accepting of myself but i still flip in to PTSD at times.........all i can offer is listen gently to yourself as though you were a young child to generate compassion.....
H U G S to you xxxxxx0 -
Lily, you really seem to be in a much better place these past few months, so good for you for doing that work.
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Hello: i havent posted too much on here but have read the posts. I've have been too miserable on chemo and exhausted. I finally got a date for my meeting with the P/S for Oct.22 and I dont know if its the chemo affecting me or my Mom trying to talk me out of the surgery but I'm starting to wonder if I need the surgery when chemo is done, yet I had it all figured out before chemo. There were 2 lumps in the RB the surgeon didnt get clean margins on one of them and I have the marker in the LB saying it will probably go there later so thats why I had decided on the BMX with Recon and now I'm second guessing my decision. Can they tell after chemo if it killed the remaining cancer without doing surgery? If the chemo killed the cancer and I dont have a recurrence then my decision is really drastic but why was I so positive before chemo. I know I said I would do anything to make sure I stayed here for my son and I do not want to go thru chemo ever again if I can help it. I think I am scared of feeling bad again after I get better from chemo. Anyone struggle with this. I keep trying to tell my Mom that she cant understand my decision unless she was here dealing with this. Any input or encouragement would be appreciated, this chemo is doing a number on me, I didn't know you could feel this exhausted, it is truly unbelievable. Thank You for listening.
Love, Rayna0 -
Hi Raynaj
We are not Drs here however ....IMHO If you didn't have a clear margin in one lump then you need further excision ILC (especially grade 1 ) is slow growing therefore chemo is not quite so effective as for ductal and no i dont think they can tell without further pathology if cancer has totally gone in that area
If you have further lumpectomy in theory you should have rads whereas if you opt for Mx then margins sorted and most likely no rads
As to the LB that is a much harder decision to make guess it depends if you want peace of mind and a good recon result or a uniboob???? Only you can make that choice - good luck someone on these boards said something very wise can't remember it exactly but basically throw everything at it the first time we don't want a reoccurrence in any way shape or form !!!
((Hugs ))0 -
Raynaj - there is no way to tell for sure that the chemo killed all of the cancer in the remaining breast tissue unless you have the mastectomy. I assume that if you choose not to have more surgery that you will need to have radiation, right? The reason that radiation is required after lumpectomy is that it is quite common to have some cancer left - even with good margins, chemo and tamoxifen/AI. Overall, lumpectomy + rads is equal to mastectomy with respect to overall survival, so unless there are factors that strongly favor mastectomy (margins, tumor size/location, etc), the choice should be yours to make. Please don't listen to your mother or anyone but your trusted doctors as you try to make treatment decisions. These choices are yours alone and you're the one who has to live with them.
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Lemon....Please consider contacting Dr. Wong!
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Sorry to get off topic...I have a nagging question that's been bothering me. I have heard of ILC recurring in the chest wall. Easier to spot if one has a mastectomy and no reconstruction ...
How would one notice the lumps if had reconstruction or implants?0
