Team ILC Warriors
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i was told very clearly thst ILC. More often recurs around the ten year mark
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When I was 4 1/2 years out, my MO told me the odds of mets were 5% after 5 years. I was diagnosed with mets in my abdomen about one month later, found when I got my blood work done. My tumor markers were up.
I probably shouldn't post this. It's such a downer.
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Just when you thought you were in the clear! Why not post...it's good to know. What's the percentage of mets before the 5 years?
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I never even gave my 6 months Dx any consideration ! Plus I guess even if we had done nothing treatment wise we would probably still be around for a good year or two post Dx
I won't be celebrating anything till at least 3 years - more likely 10years!! Wonder when the odds of reoccurance drop to the same as the population in general (20yrs??) maybe that would be the time to celebrate
I prefer the description acknowledgement rather any other - we acknowledge this has happened to us - but you don't celebrate breaking leg every anniversary or a car crash or something
Roll on my 20year anniversary - that will be worth acknowledging
Xx
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Hi Seabee! I thought that w/ ILC, the rate of recurrence was higher AFTER the 5 yr mark?
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jojo, what is the recovery for the DIEP reconstruction. I did not have expanders put in at surgery so I am looking at my options. Are you happy with the results?,
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Smrlvr~ I LOVE my results! I didn't like my breasts or my belly beforehand....so, it was an easy decision for me! LOL
It was a 9 hour surgery and recovery was a little tough, but I had lots of help from my husband. The worst part is the drains...I had 6 hanging out of me for 4 weeks. My hubby had to drain them many times during the day and record. I walked hunched over due to the tummy tuck for about 3-4 weeks. I was in quite a lot of pain for first 2 weeks, but percoset and vicodins totally took care of that and made recovery sooo much more enjoyable. Our church brought us hot cooked meals every night for 5 weeks!!!! I HIGHLY recommend renting a hospital bed for the first 3-4 weeks!!!! Our insurance totally covered it and was so helpful. I was parked in the downstairs in front of the TV and was able to interact with my family during the day. Having the ability to raise and lower the bed and lumbar was perfect. I could not imagine having to sleep in a regular bed during that time! You will not be very comfortable. Also, your breast look like squashed pancakes at first and I thought they would never look as lovely as the photographs I was shown at the doctor's office....but, boy was I wrong. They do totally bounce back after surgery and have a beautiful shape...what I always wanted...perky 'C' breasts! Also, LOVE my completely FLAT tummy! Literally looks like I am 20 pounds thinner. Only thing I hate is 75% decreased feeling in my breasts and lower belly. What I HATE most is having nodes out....hate being numb under my arm and seeing a crevice....I am lucky to have no lymphedema thus far! Hope this helps?
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Jojo, on the recurrence, it is not that the recurrence rate is higher in absolute terms after 5 years, it is that it is higher than for IDC in that timeframe. Basically, for ILC the recurrence risk persists longer you could say.
Either way, IDC or ILC, the risk of recurrence gradually decreases as time goes on. Why? You have 100 women with stage 3 ILC. Statistics tell you (numbers are made up for the sake of example) that in the course of 15 years 20 of those who received treatment will recur. In the first year 2 recur. So now the recurrence risk for the rest is that 18 out of 98 will recur in the next 14 years. By year five, 10 have recurred. So now the risk for the remainder is 10 out 90 over the next 10 years, which is almost half of the original risk.
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Danishgirl, I am glad you posted, but sorry you are dealing with stupid mets. I may have asked this before, but my memory is shaky, did you stop hormonal therapy at the 5-year mark?
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jojo, yes, thank you. Very helpful.
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Hi ladies, I just stumbled across this thread. I was dx'd with ILC also. Seems like a lifetime ago. My 9th anniversary of dx came and went last month. Back then, I didn't even know bc came in different forms. Upon learning of my dx and reading for 10 minutes, my jaw was on the floor.
My tumor got an extra 9 months to grow because the surgeon who saw me in March that year apparently didn't know about ILC either. My mammo showed two small cysts, but I had a whole quadrant of my breast that was hardening, and my nipple was starting to invert. When he was unable to aspirate the cysts, and I asked what's all this hardened area, he declared it to be 'aging breast tissue.' That's a phrase I've heard once in my life, and that bozo should've known something was up.
I suppose it was a blessing in disguise, as I was bound and determined to leave town for my surgery. I left not just my town but my entire state to get my mx and immediate diep reconstruction in new orleans. I had the best medical experience of my life there. Loved every person I encountered there. And all these years later, I am happy with my results. My scar tissue was problematic for a long time. It's still fading after all these years, but at least it doesn't itch anymore. My mom is a bc survivor also. Ironically, I was more afraid of surgery than anything else, and that was the highlight of my treatments. Soooooo glad to not have a prosthesis. Don't know if my mom's was ILC or not, but I can hope that I too will have a long life with no recurrence.
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Momine, The mets were discovered after 4 1//2 year. For the last 3 years I've been on Femara until November when the tumor markers started going up.
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What area of Fla, Danish?
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Danish, thanks.
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I live in Winter Park.
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Danish, thanks for posting here, we need/want to have communication with all stages of ILC. I hope you are able to handle the new treatments. BC is a bitch...
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I know it's a hike, Danish but a group of women from here get together for the Tampa Bay area. There are some from a bit further away. You're welcome to join if you get the urge. Look for a Thread about get-together for Tampa. At our largest there's been about 12+ attending.
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Thank you Gaisal, for inviting me to join your group. It is a little far for me to drive.
I'm off of Affinitor again because of mouth sores, but I did better this time than last. I talked to a friend who is an oncologist in California who gave me some good advice. He said if I go off of a drug because of side effects, be sure to remember the reason was SE, because I may want to go on that same drug again.
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Sorry you're having that happen. I know, it's a hike but certainly worth making the invite. Take care of you!
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smrlvr - looks like were are in the same boat. I did/do not have tissue expanders either and I'm a little worried about reconstruction now that I've been through radiation. (Rads were unexpected - like a lot of us ilc-ers I went into surgery stage one - and came out stage 3) I had been hoping to do immediate natural reconstruction - but no luck.
jojo - thanks so much for sharing your diep experience. I would love to get one but am not a candidate and I have different plastic surgeons telling me different things about which flap is best/ no good.
momine - were you on Taxotere before Femara? May I ask why you decided on prophylactic ovary removal? I have my first gyno appt. since my diagnosis coming up and am trying to be ready.
Kay
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Kay, taxotere was one of my chemos, I was not on tamoxifen.
The docs and I had an ongoing discussion about what to do after chemo. I was not keen on the tamoxifen, just gut, nothing specific. I was 48 and had been in unpleasant peri-menopause for a few years already, my mom had ovarian cancer 7 years ago (she survived and is still going strong) and my aunt has stage 4 endometrial cancer. My thinking was that I was so close to menopause anyway, that it seemed silly to leave them in and start tamox, only to be moved to an AI a year or two down the road anyway and risk ovarian or uterine cancer in the meanwhile. We have no history of heart disease, just cancer everywhere. My onc thought the ooph was overkill. My surgeon backed me, strongly. Later, when they published that study about AIs being more effective on ILC, I realized why. The surgeon lead the Greek arm of that study, so he already knew the results.
In my case it turned into a win-win. We did an U/S and found that I also had several massive fibroids in my uterus, and decided to do a hyster while we were at it. I had had abdominal pain and a pot belly ever since my kid was born by C-section 20 years ago. The hyster surgery ended up lasting 1.5 hours more than scheduled, because my bladder and uterus were glued together by adhesions and that mess was then glued to my abdominal wall, which was the explanation for both the belly and the pain. I love my hyster surgeon
I mean really love him. If he hadn't taken out my uterus, I would even have his babies 
.So that is my story. It is a fairly radical approach, and many docs, including my onc, would not want to be that extreme, but I have no regrets and I even got a flat stomach again in the deal. Oh, and there were hyperplasiastic cells in one of the fibroids, so probably a good thing I did not take tamox.
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Hi Guys, hope the ILC warriors are going well. Yep, I was on Femara for 9 years without a break, so I did have a good run on it, considering I was IIIb (skin involvement), despite my recent mets to the liver.
Had a CT this week and the mets are stable on Abraxane, having a biopsy in 2 weeks to establish er/pr of the mets and future treatment. Hoping maybe aromasin may be another AI that I could take to stay stable or even better, get shrinkage. No major SEs from Abraxane, which is great. Still feeling fit and healthy, still training and living a good life. The 'scanxiety', is the worst thing!
Back at school this week after a great 2 weeks journeying through Middle Earth (New Zealand) with my 14 year old. My favourite photo, an ugly one of me posing as Gollum's sister, Gollette! Or maybe a lovely one of my son with the gorgeous Lake Wakatipu and Remarkable Mountains of Queenstown. Go the Seahawks this weekend.
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Hi ladies, I have not posted here for a while but I have been catching up on the post's, I have 4 more Taxotere left, then I have to have an MRI to see if some very small spots's that were on my lumbar spine are gone after the chemo, they did not show on my PET scan 2 weeks prior, so inam hoping and praying it will come out clean. Then it will be on to rads, I had a skin sparing BLM and no recon at the time of surgery due to positive nodes, and I was reading some of the recon post's and I have to say the more time goes by I am not sure if I want recon after all. That is down the road anyway so for now just a step at a time. Have a nice day everyone.
Shary
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Shary, hi, and welcome. I am also in the no recon club. My doc wanted me to wait, because of treatment, advanced stage etc. The more I read and saw regarding recon, the more reticent I am to do it. I think I might be happy with a flap surgery, but the thought of such a massive surgery, butchering my hips (only place that may have enough meat to work with) and the real possibility of failure and/or complications makes me more inclined to appreciate the flatness
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Thank you Momine, I agree a long and involved surgery does not sound appealing to me at all at this point, I saw my Breast surgeon last week and we were discussing how Iffy recon can be after radiation so for now I have just taken the thought of that off my plate. If my MRI looks ok I just want to finish active treatment, work on getting healthier again and start really enjoying life to it's fullest everyday, I have so much I still want to do and I sure am not ready to go anytime soon!!!!!!!!!!! My 21 yr old daughter just texted me from work saying she has the stomache flu ( she lives at home with us) so it look like it is time to get out the Lysol and wipe everything down with the disinfecting wipes, I sure don't want the flu and another delay in treatment. Better also make her some chicken soup🍲 I hope you have a great day.
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nice to hear from you, Shary. Am I remembering you correctly, that you had a dog who behaved oddly before your surgeries? (Your own personal "pet scan" ...)
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Shary, I'm sorry, I had you mistaken for another poster (also with "gram" in her username). I did a search and it was Gramwe's dog who was nipping at her body near her BC before it was discovered.
But still nice to hear from you, and keep that stomach bug away from you! :-)
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Momine - thanks so much for sharing. I have a GYN appointment coming up and I'm feeling nervous about it. Can't pinpoint why - no history of problems... but the Tamoxifen, and what it might cause, scares me. Lots to think about.
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I saw my BS 2 weeks ago for my first checkup. He asked me about recon and I said I was indifferent - his words to me immediately was that you have to be very determined and committed to recon and really want it because it is a long road !
Needless to say he could tell I don't gave any enthusiasm for it ( even w/o rads)
No recon happening here at this stage anyway.
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gemini4, I too remember that post it truly is amazing how dogs know, we have 3 dog's and a Granddoggie living with us and our Mini-Doxie is always right next to me and our shepherd mix is my shadow especially right after chemo, he just sits and stares at me and follows me everywhere.
Shary
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