Team ILC Warriors
Comments
-
Lemon, good grief! I so completely love my hyster surgeon, because he cleaned up a similar mess with the robot, to avoid cutting me open. He figured I had been through enough, and besides he is very proud of his robot and his skill in using it.
But, I am so glad that you are recovering well. We will see the tail of '13 soon
0 -
"nothing feels the same as before." exactly, lily55. I think I knew that as soon as I woke up the day after dx. I somehow was able to accept that pretty quickly, and that looking back longingly at the life I had wouldn't help me kick cancer's ass in the present. I still sometimes live in a bit of temporary shock like "wtf"???? just happened to me? but mostly I realize that my life has been profoundly changed and it will never ever be the same. when my husband died of cancer a friend told me to "look back but don't stare", and that made a lot of sense. With that knowledge I've been able to have a good life post-tx. Writing an online journal in caringbridge.org helped a lot. gratitude helps me every day. I hope you'll be able to find your way through this because I feel for you. sometimes I just shake my head when I think what I've been through in the past two years, what we've all been through. then I go out and walk or run with my dog or go to bikram (yoga) or watch something silly on t.v. or read a really good escape novel. historical novels help me get out of my head for a while, a good thing...
hugs
Claire0 -
Momine, happy for your good news. Helps all of us when one of us has good news:) All for one and one for all as they say...
Smlvr, I know you how feel. I spent a lot of time worrying about worrying. Will stressing about it bring it back? Kind of a crazy loop if you think about it, because if you're sane and you've been traumatized how can you help but worry. And then you go around in circles, worrying about the worrying! The thing that helped me the most with this was the one book on cancer that I bought and love, 'Anticancer' by Dr David Servain Schreiber, himself a cancer patient. He definitively says that stressing about cancer can't bring it on, but he has many useful and relatively simple ways to change your life positively in order to 'change your terrain' to make it less hospitable to cancer. I'm not fan of self help books on anything but I loved this book and have lived by it since dx. Gives you back some of the power and control over the things that you can control that a cancer dx, a bolt of lighting from the blue, took away.
Lemon, I had one gigantic hysterectomy, abdominal, two years prior to BC diagnosis, and then an oopherectomy a year post dx and post mx. I think the reason I haven't yet had reconstruction is because I can't stand the idea of any more surgery. No matter how much I'd like that boob back, or some semblance of one, I am just plain sick of having surgery, especially one that would be elective. I also liked the hystersisters website. PM me if you have any recovery questions. Most important advice is don't overdo it even if you feel better. Moving around too much can cause internal scarring, so really take it easy. Wishing you a better year, as I know you haven't loved 2013, but even through the bad times, we have remained alive, really the biggest blessing of all.
Am back to walking an hour a day with the dog as I have swimmers ear and swimming is out for a while. Nice to be outside, love this time of year. Best wishes to all,
Shari0 -
hi girls I haven't posted on his board before but I now have discovered that one of my cancers was ILC I always thought my diagnosis was DCIS on right side and 2 IDC on left side but one of my IDC cancers was ILC I must have not heard the surgeon at the time with the shock. I now realise I had 3 different types of breast cancer and that is unbelievable I am still in shock0 -
I've found the best way to relieve worry and fear--I still experience it, and post-meno mood swings even with a tiny dose of effexor (37.5 mg) doesn't always help, add in anti-hormonal and it can get dark out there sometimes-- is to have my list of self-soothers. For me it's reading, going to the movies with my hubby and eating movie popcorn, yoga, walking, hiking, running, cooking, watching old episodes of Seinfeld or Fraser or whatever makes you laugh, and going to mass occasionally. Mind/body/spirit. I'm not suggesting those will work for others, but I hang onto my self-comfort list and pull it out at least once a week, more if needed. It helps.0 -
I am one week post op from bilateral mastectomy. Sentinel node biopsy on left side. I now have a pain in my upper left arm just above elbow. Is that normal? I still have drains. I just hope they got all effected ones out. Hope all is well with everyone.0 -
I had BMX about 3 weeks ago with snb on left side. My arm did hurt (still does at times but now it is more of a dull ache) on the side of the biopsy. My bs said to expect it and that my arm could even be numb, but it wasn't - only my left arm pit was numb - it still is. Stretching really helped with the back of the arm pain.0 -
Smrlvr, you dont feel like there is a cord under your skin do you?0 -
smrlvr, they have to cut some major nerve during the mastectomy, and some pain is not unusual. However, do mention it to your doc.
Also, and this is my personal hobby horse, ask for a consult with a lymphedema PT. IMHO, anyone who has had an MX should get that. Your risk is minimal, with only one node out, but PT can really help recovery generally and being proactive can head off any problems you might have. The PTs are also much better than the docs at going over what you should and shouldn't do, and whatever they do to you is soothing, as opposed to most of the crap the docs put us through. My PT appointments were an oasis for me during treatment and also helped me get comfortable with my new geography.0 -
no I don't feel like their is a cord or swelling or anything. Just some pain. I called the doc and they recommended not lifting that arm at all; that the pain could be because I have tried to do too much. Have appt Friday when I get all pathology results. I hope it doesn't get any worse before then.0 -
smrlvr- I hope you are feeling better soon. I think the pain is normal. I did not have a mx only had the SNB, 2 out and my arm is numb from about 2 " above elbow up, 9 months so far. Tingly to the touch but no feeling always swollen. From all the reading I have done seems taking out those dang nodes causes the most pain. I will say a prayer yours come back all clear!0 -
I can't recall who else. Any one with Rheumatoid Arthritis? Today med was changed to Sulfasalzine (brand name - Azulfidine). Being a DMARD, I looking to see it's okay with a BC history. Prior Rheumatologist indicated it would be bad to use this class of drugs since it lowers the immune system. Different Rheumatologist today says it's a much lower dosage than what is used for Chemo, etc.0 -
Hey Lemon -- I hope you're healing up well after your hysterectomy. I don't like the way your arm sounds! I know the last thing you want right now is to see another doctor, but I think you should see a physical therapist who specializes in lymphadema about the swelling and pain that you describe.
Big (((hugs))) to you !!!0 -
I received my pathology details yesterday. ilC tumor was 3.5 cm, ER+/pR+, hER2-. They took out 27 lymph nodes; it spread to 2 with tumor tissue in one of those. My BS says stage 2. I feel a little lucky after reading on this forum that many of you are very similar to me and have beaten this thing. I will need chemo and radiation. I meet with oncologist on Tuesday and I am having port put I in an outpatient procedure on we'd. Not too sure about what to expect from that as the BS will be removing my bandages and I will see myself for the first time. Plus I will still have the drains and I done want to see them hanging out of my skin. I know I have a long road ahead of me and I am scared; just seeking some support that I can do this. I want to work as much as I can during chemo. Is that possible? Have a nice Columbus Day weekend everyone! My girls are home from college this weekend and I plan to enjoy being with them.0 -
Sml, That is actually pretty encouraging as paths go. At least from my perspective
since mine was a lot worse.
I thought seeing myself would freak me, but it didn't really. It is weird, obviously, but I mostly felt relief that the disease was in parts that could just be lobbed off without further ado.
You did lose a lot of nodes, so I would urge you to see a PT for follow-up and support during the rest of treatment. Both chemo and rads can aggravate lymph issues, so it is good to establish a relationship with a PT now.
I worked through chemo, but less than normal. I also made sure to take a walk every day. Exercise makes a huge difference in how you feel (studies confirm) during chemo.
The other thing with chemo is that much of the time, it really isn't all that dreadful or anything, but the effect is cumulative. So by round 7 and 8, I was still basically OK, but operating at about half speed.0 -
momine, good of you remind sml and anyone else that even had one node out to watch out for lymph issues. I have Lymphedema from node removal.
GIRLS, doctors downplay lymphedema (LE) because they have little training on it in med school. Please visit the lymphedema threads here a BCO and get educated so you can prevent the LE beast from taking a hold. If caught early enough it can be reversible. To me, my progressed LE is worse than bc treatment and is for life and is expensive to treat. Don't let your doctor think that you can't get it. Mine laughed at me and said I would never get it. Don't want to scare you just prepare you. I care for all our bc sistas and want the best for you.0 -
Smrlvr, healing hugs and prayers for you. Now you have a plan and things will start to get easier. You will get thru this. Just try to remember to do 1 thing at. Time so you dont get overwhelmed. Dont worry about next month or next year. Right now just concentrte on your treatment 1 step at a time. If you have any questions just ask. Healing hugs.0 -
Hugz, I am really sorry you are dealing with that. I am basically paying it forward, because I had a friend who warned me about the issue and urged me to be proactive. I had some swelling shortly after surgery, and I continue to have some (very, very, very) minor issues. I am convinced that my friend and my lovely PT saved me all kinds of hassles.
When I insisted on seeing the PT, the docs clearly thought I was being hysterical, but they indulged the crazy cancer lady.
Apart from reversing the lymphedema, the PT also just provided an oasis of calm and relaxation. For me the massages were soothing and also helped me get used to my new body. It was a good experience in all kinds of ways.0 -
Working with weights has also proven beneficial in LE prevention, but a trained and up to date specialist should be used.
smlvr, I agree--your pathology sounds encouraging to me. I worked all through my roughly 5 months of chemo, but I'm a university lecturer and work at home a lot when not in the classroom. Because I love my job, I wanted to continue doing it as it was a haven for me and a way for me to avoid thinking about the little c and focus on something else for some hours each week. I had my tx on Thursdays and since I don't teach on Fridays it gave me three days to recover from infusions. When I followed my chemo with rads I was nearly done with the spring semester and I have summers out of the classroom to prep for fall classes, so I knew a good break was coming.
I would encourage you to try to work if you like your job and need to save family leave, sick leave, etc.
Hugs
Claire0 -
Claire,
Thanks, that is encouraging about work. I am a high school teacher and I hate being out. I have not missed a day due to illness ever and now this! I would like to talk to my MO about scheduling chemo so that it is At the end of the week and I have the weekend to recover but I hear that sometimes SE do not occur for days after and everyone is different. I also wonder what the MO will say about me working in a germ factory. It has never been an issue before but it may be now. Thoughts?0 -
Normally they like you to be away from school if on chemo as it is such a germ factory0 -
Smrlvr - I too am a high school teacher and I worked throughout chemo (dd AC/T) and radiation. I was exhausted by the end of each day but felt good about working. My chemo was scheduled for every other Friday. I took off on chemo days. By the Monday after chemo, I was ready to return to work. I had a Nuelasta shot after each infusion, which helped my immune system recover. I took extra precautions while in school such as washing hands frequently and avoiding the sick kids. I carried hand sanitizer with me and did not allow my students to borrow my pens or calculator. I took care of myself at home, got plenty of sleep and tried to eat well. My students knew I was having chemo treatments and they were very protective. My co-workers also helped by taking on some of my responsibilities. I missed two days other than chemo days due to fevers which quickly resolved.0
-
I have a question about nodes -- just out of curiosity. I've noticed some of you have had a large number of nodes removed. How is that number decided?0 -
Hi Ladies,
I had chemo from November 2010 thru March 2011 and I was only able to work until early January. I had a double mx two weeks after chemo ended so I was off work until May 2011. I had so much bone pain that nothing could help. I tried all the drugs up to and including morphine. I could not have worked if my life depended on it. I was, however, able to work thru all 34 radiation treatments and had little to no side effects. Dose dense chemo knocked me down. Hope you have an easier time of it.
Take care,
Nancy0 -
Gemini, if the sentinel node is positive, most doctor's will then raze the first tier of lymph nodes. As I remember it, there are 3 such tiers (areas really, I am guessing). Because it varies a great deal how many lymph nodes people have, the number of nodes in that first tier also varies. Typically it is somewhere between 15 and 30.0 -
Ah....germ factory! I understand completely. University students are not immune to sickness as well. Thankfully (except for the little c) I seem to have a powerful immune system and rarely get colds and flu. I did get a neulasta shot the day after every infusion, which kept my white count up. I got a flu shot (first one since my late husband had chemo 17 years ago) before my own chemo...I did not get sick but made sure I washed my hands a LOT and kept clear of people who told me they were sick or feeling like they were getting sick. Is it possible you could go on 3/4 time? As for side effects, and when they appear, mine were like clockwork: about 3 hours after chemo ended, lasting 24-36 hours and then slowly subsiding. I know others had different reactions. Maybe it makes a difference what kind of chemo you get: I had dose-dense AC x4 then 12 taxol, weekly.
Claire0 -
PS my oncologist supported my working through chemo as she knew mind and spirit were as important as taking care of the body....and she knew how much I loved my job. The neulasta shots probably really helped keep me healthy through chemo.0 -
Hi ladies, it has been a while since I have posted in this thread, I see ILC is alive and well out there😝 To all the new ladies, welcome to the club we never wanted to be in but this is such a great place for support. To those of you newly Dx I would recommend that you just take one step at a time, learn as much as you can about the information coming at you, I know how overwhelming it can be but knowledge gives us power. For those who are about to have or having surgery my thoughts and prayers are with you for peace and healing. I had My BLM on 7/18/13 I still have numbness in my left armpit and into my back and just yesterday, 2 times I got the strangest zingger/ pains right about the outer end of my incision😛 My heart goes out to all just starting this journey, mine began 5/31/13, I have made it through BLM with delayed recon, I just finished my 4th Adrymiacin and cytoxin chemo protocol last Thursday and in 3 weeks I start a 12 treatment protocol of Taxotere. Radiation ( 6weeks) of that comes some time in March and then I hope to start my reconstruction some time around April or May, so I figure maybe a year to the day of Dx I may have the start of breasts again. Hallelujah. I did not mean to ramble as much as share my story with you in hopes of encouragement.
Big hug's to all,
Shary0 -
thank you for sharing your experiences about work and treatment. I have my initial consult with my oncologist today and tomorrow my BS is installing my port. I am only two weeks out of BMX and I still have 3 drains. Last night was the first night I had a hard time falling asleep (even with Tylenol pm) and I just cried. I know I need a poer but it will be a daily reminder of my situation and I really don't need anything else to remind me, especially this month! Just going to he oncologist is making this more of a reality. I am sorry to vent but I am having a bad day. My girls were home from college this weekend and I put on a brave face for them but now they have gone back and the next time I see them I most likely will have lost my hair. Sometimes this is all too much.0 -
Smrlvr - It can get overwhelming at times! Just hang in there and know that you are doing everything in your power to fight this beast. Two years ago this month I was beginning my journey. I felt much like you do now. My kids were all in college and I hated interrupting their lives. I tried to keep the game face on, but it did get difficult at times.
If you want to try to keep your hair you might want to investigate cold caps. There is a very supportive group of women who post here about their cold cap experiences. However, I found that the hair loss was not a big deal for me. I bought a few mid priced wigs and a bunch of hats and scarves. My daughter wanted to get involved, so she helped me pick out the wigs. It actually was fun in a weird sort of way. I had two 'heads'- my work head and my sassy weekend head.
As for the port, I found that I forgot all about it once it healed. It was easy to use during infusions. I had it removed after I completed radiation. The scar is almost invisible now.
Once treatment was finished, I found that I needed some help to get on with my life. I saw a therapist for a few months. She helped me put everything into perspective.
Good luck and keep us posted.0
