Team ILC Warriors
Comments
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kiss I'm here because my sister is ILC. But I'm triple pos, HER2 Pos. You may want to check the triple pos group, HER2/neu Positive Breast Cancer There is a lot of info for you. Herceptin is an amazing drug. There is tons of info on it. Good luck
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Lily, thank you! I'm going to check TM in 21 days. Then I will see my onc with the results.
Shasha, you are so kind. Thank you for the invitation. For the moment I decide to wait for the final results...Then I'll join your group and start reading again. I have to find the strength to start from the begining.
Christina
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Good luck Kiss also once you find out which protocol you are taking, you may check those out.
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Well i had my preventative right mx this month. saw the surgeon today and got pathology results.. good thing i opted to remove the right breast also.. pre cancerous cells found several areas. I also have a question about screening after a double masectomy. Here there is nothing other than clinical exam recommended. Im wondering if it worth pushing for mri of chest wall yearly
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I did my left prophy MX 2 weeks ago. Path came back with "atypical Lobular Hyperplasia" which is kind of how it all starts. Glad it is gone. Good Riddens!
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Good deal. Glad its gone. Healing hugs
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How interesting. the pathology from my bmx in July came back neg in the right radiated lumpectomied breast but mild atypical lobular hyperplasia in the left one. I too am glad I got them off my chest, literally.
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Same here, lobular hyperplasia and LCIS in the "good" breast. Good riddance.
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Hello ladies, I am back from surgery (dbl mastectomy) and my husband is taking really good care of me. I can't believe how immobile I am! My BS said they did find cancerous lymph nodes but will not know the whole picture until the full pathology report is finished. I want to start chemo now as I am worried that it is spreading through my body every day we wait. I know I have to heal first, but the fact that it spread into my lymph nodes has me in a panic. What does that mean as far as treatment is concerned and survival? My surgeon says attitude is everything but I feel like I just keep getting bad news. I
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smrlv, I had 7 nodes and that was after 4 rounds of chemo, so I had hoped to have none. It freaked me out for a few days, and then I got on with it. Theoretically it is better to have no nodes obviously, but my conclusion is that it is all a giant crap shoot any way you cut it, so it doesn't pay to get all hung up in the details.
At some point I also decided that if the docs couldn't find any cancer and I felt well, then I would count that day as a good day and enjoy it. It has worked pretty well for me so far.
FWIW, I just picked up my annual CT and bone scans, and I am still NED. Onwards!
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Amen to the Crap Shoot. Too many questions no definative answers!
Great news on your annual scans! I am 4 zaps into radiation and ready to be well away from this all.
smrlvr--I had 22 positive nodes when they expected 2-5! I also had a low oncotype, very low Ki-67 (9%) and grade 1, hardly mutated cells. They said it has probably been there 8-10 years!
But I choose to believe that the surgeon removed it ALL and it is embedded in wax in a lab. I also choose to believe that those 22 nodes worked their little asses off and did their job, and did it well. Catching anything before it got free. That's why there were so many of them! They ganged up on the junk.
I will say though that the day they said 22, I about soiled myself. That was the one and only day I ever let this get on top of me. The only day I ever felt it might do me in. Took a while to wrap my head around it all and get my attitude straight again, but I did.
Hugs and prayers.
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Yeah Momine for NED.
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Momine! NED rocks! Awesome news!
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Momine, great news!
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Thanks!
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YEAH MOMINE, way to go...xx
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Thanks, Lily.
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Congrats Momine! I wonder should I worry about not getting yearly scans? For 18 months now I've seen my MO every three months but she just checks blood work and does a physical exam. I've had to and received CA 125 tests by requesting them from my gyno and I just had a CTC test done by my naturopath. But no CT other scans other than pelvic US, paps, etc.
Should I demand them? I had positive nodes. What are others doing?
Claire0 -
Claire, I think I am mainly getting them because I had 3B and thus a large risk of the treatment not having been sufficient to knock the cancer out. We will not continue with routine scans now that the 2-yr ones were clear.0 -
Claire, I believe in scans but I am a ct tech. I also believe in radiation damage and that people shouldnt get scans unnecessarily. I dont feel that your case is unnecessary. I feel that a ct on your chest abd and pelvis once is ok and then maybe on a yearly or only by symptom neccesity. I have read too many stage iv ers didnt have symptoms. Go to a place that has the latest technology. A 64 slice or higher will have great radiation reduction protocols on it. We have to alter the dose by size and weight and our machine creates a dose report thatbis sent with the images to the radiologist. Our radiologist will flip if the dose is to high. Radiation is now monitored on a national level and for us to be acr certified we have to follow all of their protocols. We look each patient up to see whst kind of scans they have had in the past and if they have had several recently our radiologist will attempt to talk the ordering physician into an ultrasound or other test according to the specific problem. I can go on and on but I wont bore you with correct protocols. Just get the scan at an acr certified location preferably a hospital.0 -
Momine, so happy for you!0 -
smrlvr, thanks, and you will get there too.0 -
just saying i want to feel normal and me again, i am working so hard emotionally to feel happier but everything is so damn hard, and nothing, just nothing feels the same as before....0 -
lily, I know exactly what you are saying. My surgeon told me attitude is everything and since I tend to be a worrier, I am worried that my anxiety will get in the way of recovery. I have talked with several BC survivors about this and I think there is a new normal! at least mentally. These women appreciate each day and don't let little things bother them like they used to. I know that will be hard for me too. I am still so new to all of this that I still expect to wake up one morning and find that this was all a bad dream. But it is not a dream, it is my life now and I need to find a way to live it and be healthy, and appreciate the little things. This is so hard.0 -
I found a fabulous yoga center right near my house which offers gentle yoga for people dealing with health issues. I've taken yoga classes at gyms and through adult education in the past and they were great for stretching, etc. However, I highly recommend finding a quality yoga studio that offers gentle classes with real emphasis on breathing techniques and which incorporate meditation into the classes. If yoga is new for you look for a class described as "gentle" or "restorative". You can often sign up for a sampler to check out the various instructors.
I've always had a difficult time quieting my busy brain and it's been especially hard since my diagnosis as I feel the need to be on top of things all the time. I started to feel the physical benefits from stretching right away, but it took me about 3 months of classes before I could really let my brain quiet down. It still doesn't come easily, but I have made progress. My classes are nice because they are long (1-1/2 hours). I always feel wonderful and a little more at peace with everything when I leave. I do my best to go twice a week. On my non-yoga days I either go to the gym or at least walk for 30 minutes.0 -
Smrlvr, I just had a discussion elsewhere about attitude and psychology in relation to cancer. I do think it is important to get to a place where you can have calm and joy in spite of the stupid cancer. However, my reason for thinking that is that it simply makes for a much better life than if you go around all knotted up and freaked all the time. It also makes it easier to make sound decisions and generally deal with all that you have to deal with in connection with treatment etc.
However, as far as I know, there is absolutely zero, zilch evidence that attitude makes any durned difference to survival. My doc congratulated me on my sane and good attitude last time I saw him, because, as he explained, it really was downer to HIM when he had patients who had survived 20 or 30 years, but who were still all doom, gloom and misery. I see his point, but it also shows that even miserable people can live long and prosper in spite of cancer.
There is some evidence to suggest that social networks make a difference, and I can see how that makes sense. So instead of stressing yourself out about how you have to be all unicorns and rainbow poop, see some friends. When you go shopping, put on your favorite sweater and take the time to talk to the cashier or some random person waiting at the deli. A yoga class sounds like a good idea too and maybe look for a walking group in your neighborhood. Walking is something you can do almost no matter what, and exercise definitely eases the strains of treatment.0 -
Little things dont stress me out and i dont think about cancer all the time, although its harder not to in pinktober, which i HATE. i do walking and zumba often, every week without fail, BUT i cannot do things like have a public shower and join in the fun, i cannot impulsively leap in to the sea or a pool, i cannot relax getting changed in communal places, in fact i cannot do that, its too much for me. I cannot share a hotel room with friends and so doing things i enjoyed before now come with an inevitable element of ordeal , i have to wear other clothes as the zumba team tops are far too revealing, i hate bending as i feel too exposed........for me its not so much the cancer, its the mutilation.....i have truncal oedema on side under my arm so it bulges and i feel it all the time.
I cant do yoga, the inverted poses are bad fir my back, made it a lot worse, physio advises against yoga and pilates.......0 -
Lily55 - Yoga classes at a good studio are not inexpensive so I'll admit it is difficult to keep trying it out until you find a good class. The restorative sessions that I take do not include any inverted poses. Many breast cancer programs or wellness centers offer classes especially geared to people with limitations due to surgery, etc. A good instructor in a gentle class will offer alternative ways to stretch. Mine automatically gives alternative poses for those with bad knees or with bone density issues or back problems. She feels it's her job to know each student's special needs.
I LOVE Zumba, but my internist asked me to stop because my knees were swollen all the time even though it was Zumba Gold (Gentle Zumba). I really miss it:(0 -
thanks Tina, i dont live in the USA and there are no such resources here, i have been looking ever since diagnisis, nearest are a four to five hour drive away......i like yoga and pilates and would do it if there were such leaders......
I would hate to nit do zumba it keeps me going emotionally , feel for you0 -
Lily- ((hugs)) I understand how you are feeling, I don't think about the cancer everyday either but when I look in the mirror it is a constant reminder. Just today with what I was wearing I could see my rads tat in the mirror, I know its tiny and no big deal and not a good comparison to what you have had to deal with, but to me it might as well have been a bill board on my chest screaming. And all the pink fuctober crap, I hate it too. Keep doing what you are doing, I would be surprised if you were the only one in the class with these feelings. XO
My update- Both oncologists wanted my ovaries gone, surgery was to be on the 19th, easy 1 hour laparoscopic take them out. Ended up with the laparoscopic and then full 8" incision to remove everything, 5 hour total hysterectomy due to plum size cyst that had burst on left and endometriosis that connected my left ovaries to uterus over to right and was pulling on bladder. I had to wait until Tuesday after to get the call to say it wasn't cancer. Its all a blur to me as I was out of it for days in the hospital. NO Cancer was all I needed to know. It is now 16 days later, I am sore but doing okay. Saw OBGYN and oncologist this week both concerned about menopausal symptoms.. I have NONE. I keep waiting everyday for a hot flash or something but so far nothing. So far lucky. I thought that having some fat would have increased my estrogen (almost 100%) but onco said you have to have a BMI of 33 for fat to make estrogen, not close to that at all. I have been reading on the website Hystersisters which is a good site for hysterectomy issues or questions. I am sick of being pocked, prodded, cut, stabbed, burnt and man handled by strangers in the past year.
What I really want is for the year 2013 to be gone. Over, done!!! A year ago I was good, today I am a completely different person. In some ways probably for the best, many lessons learned. I have been catching up on posts and it just pains me so to see new ILC warriors join, I pray for each of you to find strength and know that it does get better. For me it was due to these boards and educating myself as much as possible. I have my 1st Mammo on 11/04 since it all started, I am looking forward to it but am also scared. This damn sneaky %^&$, its not going to win..no way!!!0
