Starting Chemo September 2015; join us!
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that pic is gorgeous. Reminds me of how much I want to go to Alaska.
Day 5 of now mild bone pain. It's 8:42 and I'm getting up. Win!
Grey, where are you?
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Tessu - Good for you for being self-aware of the roller coaster the drugs put you on and hanging on by your fingernails. You are ready for the last December treatment and you will make it through. Love the photograph - gorgeous!
Skittle - Say a few swear words to the car door for me. Hope you're out of the hospital soon.
Shopgal - Thank you for the long post - it made me cry, but in a good way. Like all of your experiences, friends, it also made me feel less alone, which is invaluable.
I'm on infamous, loathsome Day Three after weekly TaxolTuesday. Darkly amused to realize that I will look back on this level of fatigue with nostalgia as the cumulative SEs get worse over the next eight weeks....
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skittle ouch, get sprung soon
Tessu hugs
MLisa I'm glad the post touched you and others. I found it when I was first diagnosed and bawled like a baby when I read it but it also comforted me. I read it now and it make me feel better, stronger, and inspired.
Cajun you are a brave soul. We are beautiful even with our scars. That's who we are, more than other people, and more patient, kind, and free from getting caught up in the daily grind of crap. We appreciate the little things in life more passionately and smile at what we once would have overlooked in our rush through life. Enjoy the day ladies and whatever the day brings its all good no matter what.
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LOL cajun. The car is a dirty rotten player and took advantage of my weakened state.
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Finally getting a chance to post, have not caught up from the past 2 weeks really but I'll try.
Yesterday was Chemo #5, just one more to go. MO agreed to move it to 1/4 to save me thousands of dollars - yeah! Co-pay cards fr the Herceptin and Perjeta will take care of about $5k for us. I'm not looking forward to the SE's again, going that extra week was such a tease.
Interviewing plastic surgeons next week for late Jan/ear/y Feb mastectomy. Still haven't decided on just the right or both. BS says have to take a bunch on nodes on right side, can't do just sentinel - I'm bummed and hoping for no lymphedema.
Dd turned 15 on Tuesday and we had a party for her last Friday with 15 teenagers 3 days after my eye surgery. Luckily one of the Mom's could stay the whole time and help out. Tonight we have her choir concert, the steroids should help me get through that. Parties and recital this weekend, we'll see what I can make it to. Chemo #4 wasn't too bad but I'm afraid that having an extra week will set me back and I'll have more Se's to deal with this time. I slept so poorly last night Sh came out and slept on the couch because I was waking him so much. I'll have to try ambien tonight.
Congrats to everyone who has finished chemo!!!! We are all getting through this and I'm so proud of each and every one of you and your strength to pow through this fight!!
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soon...lol
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hi mom - how many lymph nodes do they estimate taking?
i'm having such an agitated day. i feel like my nerves are just frazzled. i know it's the meds and the menopause, but i really wish i could just relax for two minutes. i hate feeling jumpy and angry all the time.
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Ccajun she said she would take the cluster of nodes under the vein, usually 10-14 but they won't know exactly how many until the pathology report comes back in 3 days or so.
Sorry you're having a bad day. I hope you can find some peace some time today!
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Momtobooandbuz I cried like a big baby about lymph node removal Im still not happy about it....but so far so good. Physii was saying they do not see much lymphodemia at all and radiologist was saying if there is some swelling its usually minimal. When I was in hospital after op I asked to see physio and did the exercises religiously
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my lymphnode removal still hurts...that surgery was back in June. Does it get better? Less painful?
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Thanks Cinque, I'm hoping for the best as well! All the restrictions scare me but I'm sure it will become 2nd nature after a while.
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MY PT said as long as I was paying attention to my arm and body i could avoid Lympthedema. I hope she's right.
Mom@Boo - hopefully they do not remove all of your nodes. I have not had any pain, other than my TE, in that area. My current issue that is quickly resolving is lymphatic cording. It started out visible but after some massage work it has been harder to locate and has dissipated.
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THanks El_Tigre, I'd love to have as good an outcome as you have had! She is only taking the lower lynph nodes and leaving the upper ones , at least that is her plan, that can change when she gets in there.
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I went to a lymphedema class my place offers for free. Basically, the more nodes you have out the greater the chance. In the first 5 years after removal it's low (5% chance I think it was) but as you get older the chances increase (at one point way later on it's 50%). I'd have to dig into my info. The lymph system is like your circulatory system except it's designed specifically to remove waste from the cells. Our veins become looser and some people develop vericose veins and get swelling in their extremities. The same with lymphatic system. So I was told to just get in the habit of babying the arm, like not to carry heavy items with it. Not the strict rule I had of no more than 8 lbs but still, save the heavy stuff for the other side. If your place has a lymphedema class I'd attend. It was very interesting, but even if you follow what they tell you, you still could get it. Just like with cancer, all you can do is increase your chance.
I had 2 sentinel nodes and 2 axilary nodes taken out. The first sentinel node is where micromets of cancer were found so #2 came out and 2 axilary to make sure that was it, which it was, so he stopped there. I don't get how they come up with how many nodes they take out. I'm sure size of tumor is a big one. Mine was 7 cm yet he stopped early on thankfully. I'd definitely ask your bs about his thinking because it is a big deal. I'm so glad my bs didn't just keep digging. I'm doing chemo to rid whatever got out and rads will take care of what may be left in the foob.
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hi guys
Today I had chemo #5...ugh. I already feel nauseous. The PA said that if I have constant low grade nausea that I should take Pepcid along with the nausea meds. Going to try that
My BS said that when a node haas been found with cancer they take out a minimum of 10 nodes. This doesn't make me happy.
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The average person has an average of 35 nodes in each under arm area. The removal of the node is mainly for staging from what I was told to help my MO figure out the best course of tx for me. If my bs said I'll be taking 10 out if he finds 1 with cancer I'd look to ask someone else. Blessfully he didn't say how many and at that time I just put my trust in him and am thankful he didn't go full on crazy because of finding some cancer in sentinel node #1. I'd get a second opinion. It's your body so you deserve to understand how they figure this out. How many does he pull to see if there is cancer, and then is it 10 more on top? If you've got the time, check out other opinions imo.
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I just read this. While my delays weren't my fault and I don't think I was 90 days out from sx yet before starting chemo, this study reinforces the do not delay chemo after sx. So if you know anyone kicking the can down the road who has been recommended chemo after sx, have them read this:
http://www.newswise.com/articles/delaying-chemothe...
I just counted... I'm on the 90 day mark. Great.
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"There was no significant effect from delay for those with hormone-receptor-positive or HER2-positive breast cancers."
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I had 9 removed on my left side and two on my right side. Both of my sentinel nodes were positive so they did the axillary dissection and those were all negative. Against my better judgement, I disregarded all advice regarding lymphedema. I moved incredibly heavy furniture lifted my children and moved large oriental rugs all using my left arm. No problems whatsoever. Since then I have decided to be more cautious. I also wear a bracelet that is made out of sterling silver on my left wrist that says "no needle, no blood pressure, double mastectomy, IV port in chest." Unfortunately, I think sometimes lymphedema just happens but I know an awful lot of people who have had lymph nodes removed that have never had any issues. I know a woman who was playing volleyball with her kids and just got careless 14 years after her ALND spiked the ball and got lymphedema. Go figure.
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The sentinel node(s) are a group of lymph nodes which the tumor drains into. If the is no tumor in the first sentinel node there is almost no chance there will be tumor in the second sentinel node and so on.
When the pathologist reads slides larger tissue like breasts and most other tissue only one slide is cut and stained for the pathologist to read under the microscope. In most institutions and by CAP standards, pathologists are required to read at least 10 different levels of the sentinel nodes, meaning about 5 of those slides, are stained and read by the pathologist to make sure there isn't any tumor anywhere in the lymph node. The remaining slides are kept for ER,PR, Her2neu and Ki67 studies. Slides are cut to a thickness of about 4/125,000 of an Inch -a one cell thickness , so each cell is seen separately.
During surgery,however, they might find or feel clumps of lymph nodes which they would remove. There are three distinct areas of nodes in the axilla, lower, middle and upper. How many nodes are removed depend on the area removed from. I only had my lower nodes removed and there were seven. I didn't have a SNB because they did an FNA on my node and I already knew it contained tumor.
Your treatment plan,staging and prognosisdepends on whether nodes are involved or not. I hope this helps explain how and why they do sentinel node biopsies.
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lymph nodes...I had radiative dye injected into my tumor site. During surgery a Geiger counter was used to track the drainage of the dye. Sentinel lymph nodes were removed and immediately examined under a microscope right there in the surgery theater. They stop taking nodes out when they look absolutely normal under examination. Then the odd ones are sent to pathology for confirmation.
This was the same type of thing done with my tumor.
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Here's info from this side on lymph nodes biopsy. What concerns me is my ps thought my tumor was 4 cm. That's what the MRI showed. So he didn't know until going in that he'd find a dumbbell with 3 cm that was out of view from the MRI, making it 7 cm. Here's what's stated on this page that has me concerned though it doesn't say what the ramnifications are:
Sentinel node biopsy SHOULD NOT be offered under these circumstances:
- the cancer is 5 cm or larger or locally advanced (the cancer has spread extensively in the breast or to the nearby lymph nodes)
- the cancer is inflammatory breast cancer
- DCIS treated with lumpectomy
- the woman is pregnant
Here's the page. http://www.breastcancer.org/research-news/20090604 Good read to do before sx, which I didn't.
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Yes, technesium, a radioactive(hence the Geiger counter)part of the dye that is injected into lymphatic system to find which node is the "sentinel node" and a frozen section is performed on it by the pathologist in a room next to surgery. The Frozen or FS is done within a few minute of removal and gives the surgeon a heads up on initial diagnosis. But after that the lymph node is sent to pathology in formalin for a "permanent" section as I mentioned above.
All nodes whether the know or think they are negative or positive are sent to pathology for permanent sections. Frozen sections take five minutes by freezing the tissue and staining it quickly. A permanent section takes a uniform six hours in formalin for fixation and 12-18 hours processing resulting in better quality
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I also had the dye. I'm still mad they took so many nodes even though we spoke about less is better. The dye showed it had spread to multiple nodes so I can see why they took so many and maybe the my age played a part.
Or the surgeon was digging for gold lol
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I had the radioactive dye, the three "hot" sentinal nodes were clean, but the surgeon still removed a total of 9 nodes (also clean on final path). Never met the surgeon again, so don't know WTF she was thinking. And yes I got lymphedema, partly because I was only told post-op about the three clean nodes being removed, Only learned about the rest three weeks later when the final path came through. Also, was given absolutely wrong post-op care instructions by the breast surgery physical therapist;the risk of lymphedema was never mentioned.
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sorry tessu that they removed 9 and didn't even tell you until weeks later. Wtf is right. I knew the final number when my pathology came back, but the surgeon did say they removed all auxiliary nodes after I came to. so I knew it was not a good sign for me and not good for lympthedema. I got lucky that the Pt my plastic surgeon referred me to was also lympthedema certified. Very lucky
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Although, I read your posts everyday and feel like I'm getting to know you all,I can't help but get the feeling that no one cares what I have to say. I don't want pity just wanted you to know why I deleted my posts.
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Hi Mootoboo I got myself into quite a state about lymph node removal. I cried all the way to the hospital. I told my surgeon I didnt want the operation he told me I needed it. Im sure some people do experience awful side effects but I think most get lucky. I can do everything I used to before. I even waxed my armpit which your not meant too but I thought fuck it Ill deal with infection if and when I get it. I just washed my armpit with antiseptic soap gave it a spray with some disinfectant and moved on. I bought some medical swabs and carry them with me if I should get a cut. Let common sense prevail. My next hurdle is hoping radiation doesnt trigger it of. Our lives have changed but if we worry about all things that might happen stress will end up killing us and wouldn't that be annoying after all we're going through tyo stay alive.
My mum had hers removed 35 years ago and has had no problems to date.
Hi Hazelnut
I had my surgery lymph node surgery late August..I too had cording and that lasted a long time my oncologist said I needed to go physio but to be honest I just couldn't handle any more appointments at that time. I just kept doing my exercises and even did some light weight work. I massaged every night in upward motions. It resolved itself it did take some time. Is it cording pain you are having or different pain? I think if you are having any kind of pain you should see physio or doctor about it. Sorry you are still suffering.
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Hi Jlcl83 Ive felt that way sometimes but we are part of a group of wonderful caring women I get a lot from reading everyones posts and most times I dont reply it doesn't mean I dont care. Please keep posting I think its very therapeutic to write down what you are feeling. Cancer can be and indeed is very isolating so I can relate to how you are feeling. Im planning a restful weekend I hope you make the most of your weekend. ((((()))))
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