Team ILC Warriors
Comments
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Thanks for thinking of me Jianchi. The MRI was ok to get through but I don't know the results yet. I met with the surgeon this morning and have some idea of what's ahead. Likely a right breast mastectomy in about 4 weeks then about 6 weeks later starting chemo, unsure about radiation. Still have to do bone scan, chest xray and abdominal ultrasound in the next week. The doc didn't confirm that it was in fact ILC yet but that 2 smaller lumps from mammo are likely one larger one (>5cm). It was good to get more info and an idea of what's ahead although feeling overwhelmed going through all the info too. It helps to have a plan but I'm still terrified for the results of tests yet to come. My mind is going all over the place with what ifs! Hugs and high fives to all of you ladies that have gone through this before and those that are going through it now. It's a crazy trip.0 -
Julie and Brioche, Do hang in there! The testing and waiting is so stressful and the unknowns so scary. But the information you can get from them will help you make the best decisions about treatment. And as so many on these boards are saying, it really does get better once you have a plan in place. You've got to work to control the c instead of letting it control you! Make sure to ask your doc for an oncotype test or mammaprint. These are tests that look at the biology of the cancer cells to determine the potential effectiveness of chemo. They usually use tissue collected in the original biopsy (if you had one). Take time to breathe and give yourselves permission to be afraid.0 -
Hi all,
I am new to this, in fact I just got my ER/PR Hers2 results today (ER/PR + HERS2 -), and had a question. I understood from several websites that that this is a slower growing grade of cancer with ER/PR positive and Hers2-. Although I, I am a mixed lobular/ductal (not a lot of info on this), I was wondering what you lobular ladies heard from your Oncologist if you are ER/PR+ Hers-? I meet with my BS and oncologists tomorrow to discuss next steps. My tumor is 5 plus cm and have tested positive for one auxilla node, presurgury and am posivie for LVI.
JAB0 -
thanks for all the support!
Julie I'm glad you have more info about what's going on. Are you with the women breast centre at the civic? That's we're I am and they are pretty fast for results. I had a chest x ray today. Tomorrow I'm having the ct of the chest and abdomen. I hope they don't find anything there. They told me they didn't see anything in the lymph nodes on the ultra sound and the MRI. But that the MRI had picked up something they couldn't quite see the report said body sequence demonstrate increase t2 signal within the right hilar region apparence is non specific but may suggest lymphadenopathy at this location so that's why they are doing the ct. Thanks again for all the support cause I really need it right now0 -
I met with BS yesterday and had my drains removed which is such a relief. Still not able to drive. My BS still wants me to limit my arm movement; keeping my arms by my side. I am 3 weeks post BMX. How early is normal to begin exercises for mobility? He said he will recommend exercises when I have healed more. I also asked about PT for lymphedema. BS said there is a lymph edema clinic in his building with an OT. I am pretty sure I need. PT who specializes in lymphedema and I know there are some in this area. I just don't know why he would say OT. Tomorrow morning I have chemo class. I can't decide if I should be scared or happy that I am moving to the next phase.
You all have been so helpful. I hope you are having a peaceful week as much as you can. It is beginning to get cold here in upstate New York . Smrlvr0 -
SML, I was told, by my surgeon, to move, as in walking and stuff, to start moving the arms, but gently and NOT to lift arms above shoulder height the first two weeks. Apparently keeping the arms down in the beginning helps the lymph system heal and reduces the risk of lymphedema.
Also, the chemo and rads can make lymph issues worse. I had PT all through treatment and I am convinced it helped me a great deal and saved me from having any serious problem with the arm. So since you have access to a PT, it sounds like, go see him/her and get a consult.
Other than that, sleep as much as you can.0 -
Admittedly I only had a UniMx but still with ALD and had my drain out at 10 days. I was told that I could lift my arm above shoulder once drain was out. I played 18holes of golf at day 22 post Mx and never looked back - move and do what you feel comfortable with but do those LE exercises recommended by your PT to avoid cording etc. Really important to keep stretching those muscles.
I agree with Momine - I think chemo has made my right side operated area stiffer again0 -
jab, I have read a lot about ILC and read that too. From what I remember it seems it grows about the same rate as IDC, but has less likely recurrence rate than IDC, especially the first five years? Other ladies hopefully will weigh in on our unique ILC status and this issue. I simply can't remember exactly but I do remember reading that on a white paper/research article somewhere, and I was a bit relieved. Then someone else explained it further, and I was a little disappointed. You could also do a search on these boards using "ILC and slower-growing" or something similar and read what's been discussed already.
Claire0 -
just checking in with the ILC ladies. I hope all is going well with you all. This week will be 5 weeks since my BMX and I am loaded up with appointments related to my treatment. As I had not been in a hospital for 20 years before this, these appointments will have me reliving my dx. Everyday there is one and I am sure this week will have me riddled with anxiety. I am having a hard time sleeping and I need to stop taking meds to make me sleep because I think their cumulative effect is not good. Any suggestions? This week I relaxed a lot at home, but my world is about to change when I start chemo which will be next week. I am not sure that I am ready for that mentally, but forward I will move.
While my BMX is healing I still have "lumpy" feelings under my arms that my BS says is normal, but is uncomfortable.
I have realized that when the treatments are finished I will be a different person, the old me is already gone. That may be a good thing. Just looking for some peace.0 -
Dear smlvr,
I'm going to sound like quite the druggie, but in truth until BC I don't remember taking any med other than maybe prenatal vitamins when I was pregnant. Even now I won't take Tylenol without really really needing it. But.....a half a Xanax on any night when I felt like I needed it, post dx, has been my best friend. I am not addicted, I go for weeks now without it and have never needed to up the dosage, and i never take it during the day cause the one time I did that I was too groggy (day of my first post dx mammogram!) I like it better than sleeping pills cause the real problem is anxiety, which it addresses. You are going through a lot right now. I found that Xanax at night made me less anxious during the day, or maybe it was just having the good nights of sleep. Cut yourself some slack and arm yourself with any kind of help right now. Be sure that pre-scans, Xanax and I sleep together even now. Wishing you luck,
Shari0 -
Greenarch, I meant to post the same thing. A good American friend, who has also had BC advised me to get a xanax script as soon as I was DXed. I did and it was a godsend. All in all, I think I took a half pill 3-4 times. But it stopped the anxiety loop. Like you I otherwise rarely take so much as an aspirin. The docs were all totally supportive. They just said to let them know if I was still having trouble about 4 weeks in, because then they wanted me to get some counseling for support.0 -
hello everyone - just checking in...
Have been away dealing with rads (um, OUCH) and now getting ready to face the tamoxifen monster. For some reason the "t" was always my biggest fear. I was worried about it very early in this whole process. I had no idea what I'd have to go through to get to it! But it's bearing down on me now so time to start researching again. I'll be flipping back through a lot of the pages I missed here to see if I can get some more tips/insight. Is it common to get a baseline test of your hormone levels before you start tamoxifen? Seems like it would be. I'd like to track it. Maybe when my levels start to dip naturally I could ditch the stuff and try a more natural approach. Scared though.
Thanks everybody for sharing and I'm sending healing hugs to all.0 -
Kaydee, I don't know how old you are, but I was close to menopause anyway (48 by the time I had BMX and finished chemo), so I chose to yank my ovaries and go on an AI instead of the tamox. There are obvious downsides to both approaches, unfortunately, but so far so good for me.0 -
Kaydeesmile, I was on tamoxifen for over a year till I was dx as officially in menopause, and I had no problems with the drug at all. Not everyone has problems and many of the ones you see who post on discussion boards are not in the majority. I'm on arimidex now and other than a bit of stiffness from time to time (which regular bikram yoga and exercise takes care of) I feel great. Try to be hopeful. I had to tell myself to embrace this drug and believe it was going to give me a longer life and kick b.c.'s ass. That seemed to help a lot.0 -
Hi, Kaydee, I agree with the ladies who've spoken right ahead of me. Don't fear T, be happy that there's such a great drug to try to fight back the beast (keep BC from recurring. sorry, a bit of melodrama...) I think any SE is preferable to dealing with BC again and women 25 years ago didn't have this option. I found T very manageable. If you can have the mindset that you'll do all of the natural things to combat SE's, such as taking omega 3, exercising, eating well, (see other threads re natural, hormonal treatments, etc.) you may find that it's all not such a big deal. I do want to mention that you should have your hormone levels checked while on T. I had the unusual SE of having my estradiol levels rise very high because the ovaries are sometimes tricked into overdrive. This isn't something you want while on T or post BC. Used lupron shots for a while to chemically shut down the ovaries but since I was already 51, I had an ooph and then switched to an AI. Am now on Femara and also annoyed by the SE's but dealing happily with them rather than BC.0 -
although I am too early in the process to be on tamoxifen, that is the plan. I am 50 and definitely not even close to menopause. From other women I have spoken with, they have preferred arimidex from a sE perspective. My question is, if they check your hormone levels after chemo and radiation can the results show I am in menopause. Does the tamoxifen mask menopause in bloodwork? I know it is down the line but I am thinking of having ovaries removed as I don't think I am even close to menopause and I have had my period since age 10. 40 years is enough.0 -
smrlvr
At 50, I wasn't even close to menopause but chemo put a stop to that. Are you having chemo ? And so T it is for me and although it is early days (3weeks) - nothing SE wise (except maybe a weight drop
)))) - periods for 4-5 months now
Embrace it !!!0 -
Thank you all SO much. I can't tell you how much I appreciate the reassurance. I like the idea of counter-balancing the side effects of Tamoxifen with natural remedies. I just don't want to get in that cycle where one drug leads to another and another and another. I've done a diet make over, cut caffeine and alcohol, a lot of grains and most dairy. Sugar is still my weakness - but at least it's honey, fruit, and raw cane sugar these days. Once I'm not so sore and roasted from rads I plan to step the exercise way up too. I would love to be brave enough to go the completely holisitc/alternative route - but I know I'm not... at least not yet. Big T here I come...0 -
I am on tamoxifen for past three plus months and am using Remifem(black cohosh) for the hot flashes and night sweats. Helps alot. Also onco said to try taking the 20mg dose in two divided doses.
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Kaydee, I am on femara, which is a little different SE-wise than tamox. But femara can raise cholesterol and blood sugar. My blood sugar was hovering near 100 all through chemo. My cholesterol was fine, but crept up to 200 once I started femara. I had blood work two weeks ago, 18 months into femara, and my blood sugar was 83 and the cholesterol 170. That is thanks to a careful, but not crazy, diet and daily exercise. The exercise is not anything heroic either, mostly walking with some weight work 3X a week. So you can do a lot to take care of yourself.0 -
Kaydee, I'm not sure if you've already gotten advice about products for protecting your skin during rads, but I highly recommend a calendula cream. I alternated between My Girls (calendula) and Jean's Cream (mostly aloe), and my skin held up pretty well. I developed folliculitis at one point (which no cream could have prevented), and I got an rx for silver sulphide cream that was very helpful. Drink lots and lots of water -- I found this really helped my energy level during rads. And get lots of extra rest.0 -
macb - thank u! these flashes at night are horrid.
momine - i was so fixated on monitoring my red and white counts, weight, and med dosages that i didn't pay that much attention to my blood sugar levels- gonna watch those more closely...
gemini - my ro gave me a cream called "silvadine" which i'm guessing is similar to the silver sulphide you mentioned. it's working wonders. i've got some aloe and emu oil, but i'm definitely going to try the calendula too. thanks much0 -
silvadine was exactly the name of the cream I was prescribed. Glad it's helping! :-)0 -
Sorry, I'd not looked at the details before asking the question0 -
How many on this ILC thread reconstructed with Implants and with Flat and Fabulous?0 -
sgreenarch,
I am 51 years old and have been on Tamoxifen since last July. I recently had my hormones checked by blood test and my estradiol level was at mid 700 which is very high. It also showed that I am not in menopause. I have not had a period for 3 months now. I have read that blood test is not very accurate and it is a snapshot. I am looking to see if I can have a 24 hour urine test but majority of doctors do not offer it. Do you think I need the Lupron shots? Is there a test that shows if Tamoxifen is working and is being absorbed? I had hot flashes for 2 months but this month I have none. What should I do? My primary doctor did not even want to talk to me when I asked the nurse about my high estradiol. Any help or suggestion from anyone is appreciated.0 -
New2, you should discuss this with your onc.0 -
Wintersocks - how are you doing after your surgery yesterday?0 -
Hello everyone
Well, I have been reading posts and subjects here on the breastcancer.org site for a few months now - and now I am here to introduce myself to those also dealing (or have dealt with ) ILC.
I was diagnosed with ILC on September 12 and had a lumpectomy on October 8. Everything went very well. I was, however, misdiagnosed in October of 2012 after my ob/gyn sent for a mammo and ultrasound (at the time, mass was believed to be a fibrodenoma by her). The technician advised me that the lump was "hormonal" and would "either grow, shrink or could disappear". Unfortunately, I was naive, and left thrilled to bits that I didn't have any indications of cancer (how wrong I was). The worst part was he wrote the report to my ob/gyn saying that there "were NO masses or lumps and that everything was normal".
My lump (left breast) kept growing though - I could actually grab it with my index finger and thumb. It hurt all the time. I couldn't even sleep on that side. Everyone kept giving me the "you know, if it hurts, it's not cancer" story but I gave up and went back to my ob/gyn. She immediately took out the report she received and that's when we realized the issue at hand. She had me consult one of our bigger breast cancer clinics and here and after yet another round of mammogram and ultrasound, they proceeded to do a core biopsy.
The story unfolds with me finding out that I had cancer on September 12. I did not cry. I knew - deep down inside, I knew. The tumor was 3.5 cm.
I am now waiting for my rads to start - there was a slight hick-up with the 2 oncologists I met (I was advised that chemo would not be beneficial for my type of cancer - but was given a week to decide). I advised later that I did not want the chemo. The Oncotype Dx test was still being sent out - but I was to start rads. Well, nada, niente, no call. So yesterday I finally called them and we got the ball rolling. Looks like I might only start after the Christmas holidays - which concerns me a bit - but I trust they know what they are doing.
I am really appreciating the opportunity to read individual stories here and to be a part of a group of women that are dealing with the same thing as I.
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hi junipergirl - welcome to the boards no one expected to be on !!
Sounds like you have really been thru the mill !! Glad to see you were still node negative after 12months but sincerely suggest you grAb everything they throw at you/it especially after a lumpectomy incase it was multinodal
Whilst chemo maybe less effective on ILC due to its slower growing nature I was still advised there was a 6% benefit which with the hindsight of TC x 4 was easily doable
I hope the radiotherapy treats you kindly after an Mx I escaped that Tx and no doubt they will suggest tamoxifen or an AI after all is done and those confer the greatest protection of all
Lastly review/reduce your alcohol intake if you were a big imbiber !!
Keep posting0
