Team ILC Warriors
Comments
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http://www.ncbi.nlm.nih.gov/pubmed/22323002
Iodine helps keep thyroid hormones balanced...healthy thyroid, less breast cancer?
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OK, yes, iodine is helpful for the thyroid, but I am not sure there is any connection to breast cancer.
Apparently there is a connection between benign fibroids of the breast and thyroid disease, but as far as I remember, there is no known connection between fibroids and cancer.
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HI, Lemon asked me about menopause post oopherectomy. I think there may be other threads about this, too, but this was my experience...
I had had a hysterectomy, pre BC, in 2008, for a huge fibroid when I was 47, but kept ovaries (that was the prevailing advice then, to keep them for heart and bone health, etc.) In 2010 was dx w BC, and all hormone tests showed me to be still premenopausal (peri-menopausal, whatever that means) so I started on tamoxifen. Tamoxifen caused my ovaries to think there was a lack of estrogen so they went into overdrive and my estrogen levels shot way up. Did lupron for six months (hated it for a lot of reasons) and then did ooph.
I stayed on tamoxifen for another year post ooph (I think my onc wanted me to have the full 2.5 year benefit of tamoxifen) and really had no bad menopause symptoms during that year. I was waiting for them, but really nothing happened. I started Femara this past January and since then I've had worse SE's and hot flashes. Because of this, I think that the hot flashes are more from the Femara than from the ooph, or maybe a combination of the two? I haven 't had it tested yet, but i imagine that my estrogen levels are probably very low or non-existant, a state that you don't have while pre-menopausal and on tamoxifen. I think these hot flashes, the joint pain and the fatigue are all a result of really low estrogen and perhaps Femara. All that being said, I don't want this to scare anyone away from Femara or the ooph. These SE's are annoying, but I prefer them to a recurrence, and I do things to counter them. I eat well, exercise and rest more, and find it all manageable. I also take omega 3, a probiotic and vitamin D. I had a bone density test before starting femara, a year post ooph and my bone density is better than average! I could use to lose 10 lbs but my weight is in the range of normal, and though cholesterol is up since femara, no heart problems that I know of.
I am so relieved not to have these ovaries in anymore. I think my body didn't do well with too much estrogen (horrible PMS, heavy periods, fibroids, gallstones, etc.) I am also happy not to have to worry about ovarian ca or any other type of gyno cancer actually. Risk of ovarian ca is close to nil. Happy about that. So I'd say that the fear of catastrophic menopause may be exxagerated. All ok.
Hope this is helpful!
Shari
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OK, I need to correct info I gave from my oncologist. I misunderstood. (I know, soooo understandable given the info overload.) The reason for no chemo is NOT due the tumors being ILC but due to the ER/PR+ status of all the tumors including the positive margin at my chest wall muscle. So, radiation plus hormone blockers. My oncologist is out of town so I can not ask about how the pleomorphic (higher risk) aspect affects the chemo decision.
I am going to get a second opinion in any case just for my peace of mind.
HollyBoo
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Hi Sgreenarch,
Thank you for sharing your story. I have started Tamoxifen for a month now. Before this I asked my ob/gyn to check my hormone levels. Do you suggest these hormone levels be checked again to check the estrogen level? Mine was done by a blood test. Does it matter when in the monthly cycle to check the hormones? Any other way of checking besides the blood test? The reason I am thinking this may be my case also is because I do not even get any hot flashes. But it could be b/c it is only a month. Thank you for your help.
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Hi girls!
I've been MIA due to yet another infection in my left implant which has now been removed completely. What was supposed to be a day surgery turned into a 2 day hospital stay due to my blood pressure being extremely low finally figured out that it was due to a UTI that my body was battling. I actually saw it tonight for the first time and it looked even worse than I imagined. I'm so tired of this emotional roller coaster, I feel so defeated since things were going pretty well even with the setbacks. I too had ILC, I met another medical oncologist (as i did not like the first one i met.) last week we will meet with another one tomorrow. To compare treatments. The first one suggested that I do FAC for four treatments, followed by 12 weeks of taxol. Then some shot that starts with an L and the femara. It is all so scary especially by the fact that my body couldn't handle 2 infections at the same time with my immunity system still in tact. Maybe I'm over thinking things but sometimes it is very difficult keeping out the fear!
Hug, love and prayers!
Melinda0 -
Molinda, I am so sorry that you have been put through the wringer like this already. Deep breaths and focus on healing.
My chemo was slightly different: 4X FEC (similar to AC, but epirubicin instead of adriamycin and with fuorocasil added) followed by 4X taxotere. My onc gave me a neulasta shot after each chemo to keep my blood counts and me up through the treatment.
It makes me grumpy that they did not delay the recon till after your chemo.
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Sadly, a Seroma busted open early yesterday. Surgery will be Friday, since it opened the incision from surgery last month more than 5" and 3/4 of the total incision. For now, wound care without a wound vac until then.
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Molina, I am so sorry you are having such a tough time, Momine hit the nail on the head though, I was so upset when I woke up after BLM and my PS told me that it was decided by my Hubbs, him and BS that my recon would be delayed so that there would be no delay in treatment. I was not prepaire mentally for that but I thank God when I hear stories like yours that my PS made that call. Good luck with the new oncologist and keep us posted on how you are doing.
Glasal, I can not imagine my incision opening up, how frightening that must be, please keep us posted on how you are feeling.
I am doing my Pre chemo labs today, we leave for Minden tomorrow with the camper and I start my treatments on Thursday so lots to do today, big Hugs's for my sisters that are not feeling well.
Shary🌞0 -
I hope everyone in here who had a hard time lately will have a speedy recovery. I will keep everyone in my prayers. Galsal, good luck on your surgery on Friday. Molinda, I wish you the best of luck during chemo.
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Galsal and Molinda I am so sorry that you are going thru this. I pray that your surgery goes well and that both of you heal quickly.
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That "L" shot likely is Lupron, if you weren't already fully menopausal.
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Galsal and Molinda - hang in there. Sending hugs and positive vibes your way.
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Melinda and Galsal -- so sorry you're both facing setbacks. All the best and big hugs to you both.
Shary -- good luck with your next step of treatment, and big hugs to you too.0 -
hi, I was just diagnosed with ILC a month ago. I feel really overwhelmed. I am scheduled for rightside mx on 8/22/13 with reconstruction. Was thinking about doing a double mx but my doc talked me out of it. ive heard that ILC is prone to come back in the other breast. has anyone had that happen?
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Hi lor, I was diagnosed a month ago too. I had a lumpectomy and SNB about two weeks ago as according to the U/S my tumour was about 1cm well it turns out I had ten tumours with a span of 4cms. I had an MRI this week to see if the cancer is in the other breast and thank god it wasn't althought the breast that I had the lumpectomy on still have extensive cancer so I am having a MX on 8/20/13 and full Axillery clearance. I do want to have a MX on the other breast. My surgeon wants to wait until I do a reconstruction and then I can do a mx and immediate recon on that breast. It is so overwhelming isn't it. My head is still spinning from all of this. I also had both sentinal nodes positive. I can't do an immediate reconstruction because I will be doing chemo and then radiation so I have to have a delayed recon. I think lots of women on here opt for bi-mx just for peace of mind and then low and behold they find something in that breast. It is a very personnal choice. Apparently there is approx a 1 in 3 chance of ILC to be or go into the other breast. I wish you all the best.
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Hi Lor and fighter
So sorry u find yourselves here
I was Dx ILC beginning of June
I had a UMx june 19th and ALD ( 13 removed) - now half way thru chemo
I asked my BS about second breast three times and he assured me there is only a 1% chance a year it will come back in the other breast.
At present I am not even considering a recon when you start to read all that is involved and the pain etc etc. if I had had a DBl Mx I might have thought differently however most medical literature you read implies that taking both breasts is some what over reactive but we do ALL definately go thru that thought process. It is a logical thing if we had it one side ???
I have reduced my EtOH intake from about 30-40 std drinks a week to 3. Hopefully that will stave off any repetition !!!!!
Good luck to both of you -0 -
Lot and fighter, welcome to the club we NEVER wanted to be in, but glad you found us these threads here have saved my sanity over the last 2 1/2 months since my Dx, as you can see I opted for BLM, was going to do immediate recon, but 15/15 bad LN took me to a delayed status. It is indeed a very personal decision but I knew right away when the radiologist that called me with my Dx said that this cancer is very sneaky and tends to be B/L aka" The Mischevious Meurader" and my last mammo 2 years ago showed nothing but the fact is this has probably been growing for 7-8 yrs. And my breast surgeon told me I was a moving target for it to hit the other side I just wanted both sides off as I did not want to wait around and wonder nor did I want to go through any more Bx's. I am at peace with my decisions although I am 2 days after my 1st chemo and not feeling very good from that standpoint but it is #1 down🌟
Take care and keep us posted.
Hug's to all Shary🌞0 -
Nocompromises, am I reading right that you used to drink 30-40 drinks a week? If so, how did you cut back so drastically?
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Hi all,
I have only posted once very early when I was diagnosed in June. I have found these boards very comforting even though was too shy to post. I was diagnosed in June with ILC and choose Umx with TE placement end of June. I am 39 yrs old with 2 wonderful little girls and new husband. Yes, we got married in July and 2 wks later have surgery. My BS ran Mammaprint and it indicated high risk for recoccurence. My path report from sugery had invasive cancer with both features of lobular and ductal. Oroginal biopsy indicated lobular She indicated I have to speak to MO (setting up initial consult) but she thought I should go chemo route. Wondering if anyone else was in similar boat and what they decided and what MO recommended and the treatment regimen by MO. Just trying to get an idea for what I am in for and how long. Also do they delay implants for me to start treatment?
Sending positive thoughts to all of those out there going though this.0 -
Hi Momine
Yes I hate to admit 30-40 standard measure drinks ( that's a very honest calculation) which is basically maybe 3-4 bottles of wine
ie 2 -3 nice big glasses a night scary how it adds up
A std drink is only 100ml of wine or 30ml of tequila and trust me 3ls is NOTHING !!!
I think I just freaked out once diagnosed and am certain that is what caused my ILC therefore stopped cold turkey for a month. My onc says I can have 3 std drinks a week and not all at once
I have found 2 really nice bottles of dealcoholised bubbly wine that I enjoy - so they are a great substitute when I feel like ' something different' but the no alcohol red and white wines I find disgusting
I stopped drinking completely for a month and now ridgely stick to 3 std drinks. Don't miss it so much now so hopefully can keep it up
I actually surprised myself at how abruptly I just stopped
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I mostly stopped drinking too except for the odd glass of wine. I decided to have two beers the other night and had a headache all the next day. I have turned into quite the "lightweight ". There are worse things
. Lor my BS talked me out of a bilateral too. He said he didn't really support the decision but would leave it up to me.
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Nocompromise, I must admit I am not far behind you in the drinking limits. I feel strongly that drinking also had a big part in me getting BC amongst all the other risk factors as well!
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Nocompromises, that is really impressive. Well done! I found a non-alcoholic beer that I drink sometimes, but the bubbly sounds nicer.
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Wasn't much of a big drinker during the period this was brewing. Although that has been slightly reduced, I'm just not going to live in a bubble over it.
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Hello everyone. I quickly read through the posts. I don't usually post but thought I would share my experience and my thoughts.
1) lor, I was diagnosed with ILC in my left breast. My surgeon strongly urged me not to have a bi lateral masectomy just a single. One of the points he made was what if the side that didn't need removal ended up causing an issue and delayed treatment (chemo and rads). At that time, we weren't totally certain what was going on in the cancer side (exact size and lymph nodes etc.)
I ended up having 3 surgeries - 1) left removal 2) rt removal, TE 3) exchange
Now, I am glad it turned out as it did.
2) drinking - I have cut way way back on drinking. Usually just weekends and only 1 glass of wine (or 2 wine spritzers ) or maybe 2 light beers with very low alcohol .
And many times I drink Pelligino in a wine glass with a lemon.0 -
Hello all
I enjoyed quite a few drinks when I was in my 20's and then it just naturally eased down to a few a week. Now I find I can't stand the taste of wine at all. It seems chemo has altered my taste buds for it. I do sometimes think a nice cold chardonnay would be nice, but I can't drink it. I wish it had altered my taste buds for chocolate ... sigh ... but when on Taxotere chocolate icecream was about the only thing I could actually eat, half a teaspoon at a time with lots of time in between each one.
Trish
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I'd love to join this group.
It's going to take me awhile to read all of this.
It's lovely to find like minded people.
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Hello ILC Sisters: I am new to this board, I do recognize a few names from my chemo thread, Hi Gavinsgrandma, I didn't realize you were ILC.
I would bet my drinking might have contributed to my cancer too.
I'm wondering about the wine drinkers my mom researched and is telling me to drink a glass of red wine a day, because of the high content of ? (don't remember what it contains) but its suppose to be good for us.
I was wondering how many are freaked out because they call this the sneaky cancer, I was DX in Mar,2013 with one mass found with U/S then they did an MRI and found another in the LB and a small spot in RB. The RB turned out to be nothing but the LB was cancer. I'm wondering how many mammo and US missed the 2 masses in my LB, the one was 2cm and the other 7mm, I know they aren't extremely large but how long have they been growing in me. I didn't have node involvement but have here of women with no node involvement and it still mets to other parts. Its scary and the fact that it forms a mass and not a lump you cant notice them as easily. Do most of you have very fibrous breasts because mine are very, very fibrous and or course that makes finding the cancer even harder.
I have also chosen the BMX just to be on the safe side and hopefully never have to do this again. I was pretty confident in my decision about the surgery and am half way through my chemo but am getting pretty nervouse about surgery coming up.
Thanks for hearing me out, these boards are a lifesaver, don't think I would have done so well emotionally without them.
Love, Rayna0 -
Good morning ladies, gonna keep it brief I have to get ready to go do labs for tomorrow's chemo, I agree take those anti nausea med's on time, I tookmine every 6 hours like clock work and really never had to much nausea, just lost my appetite, but one thing that did sound good to me was fruit or anything cold. About the note books I have done that from day one( I was a receptionist for 3 years for a busy internist office) so I get copies of EVERYTHING, I have one big binder that keeps very thing from my mammo s, and all test results, each Dr has a section, all the way through all my pd medical bills associated with breast cancer, and I have a separate folder for my chemo and rads. I have a section for my Dr, test results, hand outs that the nurses give me, anything that comes from his office is in that binder and my nurse actuall said the first time I met her" oh we are going to get along great" I had my folder( it has a cute puppy on it listening to headphones) she thought it was great I take it every time I go and if I want a copy or have any questions it is right there. I hope every one who had treatment is doing well today and those of us going tomorrow,hydrate and eat well if you can and let's pray for minimal SE'S.
Shary🍁0
