Team ILC Warriors
Comments
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Hi, been away for a while. Nice to hear from lots of you. Sounds like we are doing ok...:)
I always feel like jumping in when I read about someone scared to begin tamoxifen. Socalmom, i was on tamoxifen for 2.5 years (switched to Femara about a year ago post oopherectomy.) I found Ito be totally manageable. Hot flashes but might have had those anyway. Mood swings actually much improved over PMS. It is such an important part of our arsenal that I decided to have the attitude that I was fortunate that my generation has such good defensive drugs. That made taking it much easier. Good luck!
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thanks all.. U all are just so wonderful.. Met with MO today. He again confirmed that no rads and chemo. No rads because we opted for mx instead of lumpectomy and had clear big margins. I am going to start tamoxifen right away. We discussed side effects and options. I m just 43 so I might need longer therapy on tamx.. He said who knows what new things might come up in next 3-4 yrs
Have another follow up with my surgeon in 2 weeks and will talk abt appointment for PS. The hospital also has a seminar on reconstruction options where past and present patients come and talk about experiences. Some patients will also "show" the reconstruction they had. Planning to attend that next week.
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Good morning! I haven't posted here in awhile or on these boards...been crazy busy livin life!BUT this week has thrown me for a loop as my arm is sore, and hand is swollen and sore...now fearing lymphedema...ugh!!!!
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jojo, hope not, have you had it in the past?
I will take a class for information on it, survivorship classes, in a few weeks...
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Nope...came on suddenly...I did have some slight soreness for a few weeks but chalked it up to my being a wedding photographer and carrying equipment...but, now the swelling.0 -
Jojo, get to a lymphedema therapist ASAP. If you set in quickly, you have a much better chance at beating it back.
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Jojo - I'm a wedding photographer too!
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I am def going to get to a clinic asap...I see my family doc this week...hoping he can write a referral? otherwise will have to contact my breast surgeon. I wish I didn't let the soreness go this long...ahhh, denial is blisssss..LOL0 -
Trisha! Don't you just luv being a wedding photographer? It is my passion...My hubby does it with me, so much fun!
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Yes - I do love it! I have a business partner, but my hubby is my videographer when we need one
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Hi Ladies,
I just wanted to share some encouraging news. I was at a St. Patrick's Day party last month, where I met a woman that was diagnosed with both lobular and ductal cancer 19 years ago. Her only treatment was a double mastectomy, and tamoxifen. She has two daughters in their early 30's. Both are being watched carefully, but so
far, they are fine.0 -
Hi Vanessa! thanks for sharing! Very encouraging! Do u happen to know what stage she was in? i assume she did not have nodal involvement?0 -
Hi Jojo,
I don't know what stage she was when diagnosed, but she did say her nodes were negative. Also, that pre-surgery testing only showed tumor in one breast, but she chose to have a bilateral mastectomy. I think testing and treatment have come a long way in 19 years though. And she's doing well. Makes me think we will too. ;-)0 -
Hi Jojo and Trisha Anne: I'm a professional photographer in North Texas. I shoot sports, corporate conventions, for book publishers and stock photo sales. I will do weddings on occasion.
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New study on genetic variants associated with ILC
http://www.plosgenetics.org/article/info:doi/10.1371/journal.pgen.1004285
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Vanessa- thanks for posting such good news! It is so nice to hear some good. I try to remind myself that there are so many that go on and lead healthy lives. Most that post come with questions, are their own research team and want to learn or have issues. I am bit of all of those! But to be reminded is nice.
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Lojo, kind of a grim article. I have to remind myself not to click open everything I see related to ILC since the article claims that we have a lower rate of 10 year survival compared to IDC. I find myself coming to these discussion boards less and less, since what I've read on them lately seems to emphasize survival for node negative, which I certainly am not.
Off to bikram yoga. Better for me than getting bummed out this morning any more....
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I. Agree Clare. That article did not make happy reading for me either.
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Hi Claire- I didn't read the article, I am done with the articles. I just refuse to be scared anymore. I am more into the positive posts. We are all here alive and enjoying life that's all that matters. You too Nocompromises!
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I didn't mean to upset anyone. I thought this an appropriate place to post relevant, new research about ILC specifically. Also, the paper is not an article about survival odds of ILC. It is about new SNPs (single nucleotide polymorphisms) that have been tied to risk of ILC in particular (compared to IDC). Identifying these genetic variants can lead to identification of proteins that are malfunctioning in ILC and open doorways to new treatments. Knowing this sort of information might be useful if new drugs come down the pipeline in a few years that are more likely to work if you have one of these variants.
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Lojo you didn't upset me. I do agree with you its important to post articles. Its how we interprit them and some I know I shouldn't read. Keep posting, I know many want the research and info.
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Lojo, don't apologize. It is very important info, and it is potentially also very hopeful.
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Lojo....you were right to post it - good to see that they are trying to find diagnostic differences between ILC and IDC. I guess none of us like reading that OS odds are lower for ILC then IDC even is it is only 2-3% -
On a brighter note. I thought I had broken a rib over the weekend and had an X-ray to confirm - short version. Rib not broken but also no suspicious masses visible on X-ray either which is encouraging after 12months especially if we are not officially having follow up scans etc !!!
Now I have to hope the X-ray radiation doesn't trigger anything !!
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gemini--I agree ---- "mastectomy is the best option with ILC" is a broad statement and while it may be the best choice for some, it is not the best choice for all. My mom had ILC many years ago (stage 2 with negative nodes); had lumpectomy, radiation and 5 years of tamoxifen; is a survivor of over 27 years now and has never had a recurrence! (I was diagnosed with LCIS over 10 years ago, had lumpectomy, took tamox for 5 years, now have been on evista for almost 5 years, and continue with high risk surveillance of alternating mammos and MRIs every 6 months.
anne
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Anne,
Are you in the states? I have stage 3, lots of nodes, I cannot get a MRI. I have asked my MO & RO, that when the time comes, this summer, should I get a MRI ? or every 2-3 years. A fat NO. They say not necessary. Yet lots of women with much better dx get them, like your situation.
Do I just accept this, pay out of pocket ( yikes ! )... Any suggestions?
Also, I had a lumpie...still ok with that decision.
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Holeinone - I had to fight for 6 months for a "screening" MRI. My mammos were useless due to extremely dense breasts. My GYN really wanted me to have an MRI, but she was unable to get it authorized. It was the BS who had done a biopsy a year ealier who finally got it. She seemed to indicate that the request had to have very specific information worded a certain way to meet the criteria. So, I think you need a doc as motivated as you to fill out the request paperwork. Perhaps your BS could help you out?
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HoleinOne, I asked about alternating MRI and diagnostic mammo/US with my MO, RO and BS. They all advised me that my breasts are not dense and that an MRI is not needed. If my breasts were denser, I would insist on an alternating MRI and would pitch a giant fit for it. If you are fearful without an MRI and need the peace of mind, make sure that you communicate that to your doctors....most will listen to you and help you get the peace of mind you need. Especially if you threaten to do a "freak out" in their office.
I also had a lumpie and I resist the notion that the only treatment for ILC is bilateral mastectomy. That's what the first surgical opinion was and so I went for another opinion just to make sure. My second surgeon said.." Let's first check for genetic mutation and get an MRI to make sure we aren't missing anything....but if those come back clean, you should have a small surgery because you have a small problem" Turned out I was BRCA negative and the only cancer found in the MRI was the small residual cancer left from my biopsy.
I'm only a year out, but I am happy with all my decisions.
MsP
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MsPharaoh, I don't think BMX is the "only" way to deal with ILC. You are in the minority of ILC patients, however, in that your cancer was found when still small. ILC has a tendency to be stealthy and evade mammo and manual detection, which means that an awful lot of us present with huge honking tumors by time of DX. In my case, there was no possibility of saving the right breast. Mastectomy was a given. It was then my choice to get rid of both, for reasons I have explained before.
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Met with my new BS for the two year review. He's my BS at the VA but hadn't been able to get in to see him so I used my insurance to see him at his private practice. At least he was able to pull my records up right then and there! It was SO nice to hear a validation of the actions of the BS that treated me before retiring. Soon as I said it was ILC, this BS agreed with my decision for a BMX and also the former BS's to not permit immediate reconstruction due to the likelihood of finding far more than expected once in during surgery. This new one was at the local NCI for some time too.
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Galsal, I see you had tissue expander reconstruction after MX. I have not had reconstruction yet (BS didn't recommend it) and now I am considering options. I do to know if I want to do the flap procedure because the recovery is so long. I know many PS do not like doing tissue expanders after radiation. Did you have radiation? Just want to know how it all worked out for you.
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