Stage 2 Sisters Club
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My email notifications were somehow lost while I was thinking how quiet this thread has been!
I went to Machu Picchu to celebrate my first canceversary and I prayed that each and all of us here today are here and well at my next canceversary!
About nodes, I am all for getting rid of them. I requested to have all mine removed but my surgeon would not do that. I'm sure my position was perceived as extreme. Thus was bc the radiologist showed us a big mass under my arm before my surgery. Surgeon only took three out. There is a 10% chance that other nodes may contain cancer cells that were not present in my 3 removed. Chemo was still recommended due to multifocal disease and tumor size. And now Arimidex for 10 years.
Good luck Missing. Making decisions was the hardest part of the process for me and my family. Cancer sucks.
Hugs to all, Nisa
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Nisa,
I'm not surprised your surgeon was against removing all your nodes, and I think you would have regretted it. The "new" way of treatment is to leave the nodes alone and remove only 1 to 3 sentinel nodes and go no further. Studies have shown that women do not do better or live longer if they have ALND's. I had a 1st level ALND and while I wonder why my BS did it, I think it was a more conservative "just in case" approach with a new provider after I switched horses midstream. But who knows. The truth is we still don't have effective treatments and shotgun approaches are still used because until we have the magic bullet, it's all a crap shoot anyway. Makes for a lively debate, that's for sure!
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I agree with you bc101. I was scared to the bone when I made that request after being shown an ultrasound showing a 2.2cm mass in my axilla by a tactless radiologist who told me to prepare for the worst. Turned out the mass was the tale-end of one of four tumors deep in my breast that was "touching the nodes" but not yet infiltrated. I remember that traumatic moment as I remember 9/11.
The "new" way sounds scary to me...why keeping active cancer when it is so easy to remove? If I knew I had active nodes, the data showing no additional benefits would not be enough to let me sleep at night.
Such a chicken I am!
Hugs, Nisa
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I think it is important to take positive node decisions on a case by case basis - in my case if I had not had ALND surgery it would have been disastrous. Studies may point to a new way of doing things, and I am all for progress, risk reduction, and less disabling side effects, but there are always outliers - so good doctors consider you as an individual, not as one of a group.
nisa - I'm with you, but of course, I am biased by my own experience!
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Wow, that was soooo bad of your radiologist to say that!! My understanding is that there's no way to know until the nodes are surgically removed and examined pathologically. During my lumpectomy I had a sentinel node biopsy and when I was told they only took ONE and it was positive, I freaked out. What if there were more? But my BS said he wouldn't be taking more and I'd receive the same treatment anyway, etc. I ended up opting for a BMX for several reasons. Right after my mastectomies, the BS told my husband they thought one "looked" positive, but it tested negative. It seems like most women on this site only have a few nodes removed anymore. So does that mean that chemo, rads and / or hormonal therapy is sufficient to kill any cancer in the nodes, if there is any? Hmm....there's so much about cancer I don't understand!
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bc101 - chemo and rads may be sufficient to kill cancer in additional nodes, but the dilemma is in not knowing for sure. Not having a clear assessment of how many more nodes are positive and how much cancer is in each of them. I had 20 IST, so not even really a micromet, in my single sentinel at the time of BMX. It was not seen by the pathologist in the OR, but was discovered in the lab after my BMX. Pre-surgical MRI and physical exam did not indicate I had any positive nodes, and of course the 20 IST would not have shown on imaging. If my docs had not insisted that I have ALND, due to Her2+ cancer in the breast, a 6mm positive node would have been left in the axilla. I know I have said this before - but that is equivalent to not surgically removing a stage 1 breast lump and just doing chemo and radiation - nobody would do that! When I later asked my BS how likely it was that chemo and radiation could have eradicated a node that size he said a 60% probability. As we all know, chemo does not work universally. My case illustrates the danger of seeing a small amount of cancer in the sentinel, assuming any other nodes have a small amount of cancer, and assuming adjuvant treatment will take care of it. If I later had a distant metastasis the assumption would be that treatment had failed, when in fact, my original cancer had never been completely removed. Your exact question makes me wonder how many times this happens, and how this skews the decision making matrix regarding positive sentinel nodes.
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Scary thought & a risk that most doctors do not at all address with their patients. Makes me glad my surgeon was 'old fashioned' and insisted on the ALND.
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SpecialK - what is 20 IST?
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I am confused by the entire node thing. How many do we have? I had 10 removed with 2 having cancer. I see some of you had 11, 14 and 18 removed. My BS stopped at ten, why do they stop at a certain amount and continue with others? If after a certain amount if all is clear, why continue? ALND SLND confused!!!!
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I am sorry for creating confusion with my initial post. Axillary nodes are 20-30 in a connected bunch under your arm. There are some nice pics in Google. Can't accurately answer your questions as to why!when surgeons stop removing nodes but it is probably a clinical decision based on the entire picture. Surgeons at NCCN sites must follow a formula and can't take out what they want. Their hands are sort of tied by those formulas in terms of how to treat each case.
I like what your doc dud, however. Taken sick nodes and some extra ones. I don't assert that everyone should do that, be with nodes or anything else, but I know it would be difficult for me to relax if I knew for a fact that actives nodes are in my system.
My problem is that I dont fully buy results from every study or prediction. Like bc101 said, there us so much still unknown about cancer.
Typing on phone us a pain, sorry for errors.
Hugs, Nisa
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Every woman has a different amount of nodes.
http://dslrf.org/mwh/content.asp?L2=3&L3=7&SID=132...
http://www.breastcancer.org/treatment/surgery/lym...
Apparently the nodes have to be examined by a pathologist before they even know how many have been removed in the lump of fat. They may take more just based on the look or feel. I keep reading that the new standard is sentinel node biopsies vs. ALND. But it depends on where you go for treatment and what standards they follow. I started with a BS at a large university breast center. But like Nisa said - and it was my feeling, too - that I didn't trust the studies and what my docs there were telling me. So I switched providers, but not just for that reason alone. My new BS had a more conservative approach. But we all have choices that we make and you gotta do what you feel is right for your particular case.
Maybe someday ALNDs will be obsolete. That would be great because the side effects suck. Although... SpecialK has a different tale to tell and her story should make women think hard about this.
I find this a fascinating topic and there's some discussion on another thread about this whole issue. I forget the name right now.
BTW, Nisa congrats on your 1st cancervisary. How was Machu Picchu? Never heard of it, but it sounds divine!
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Yes bc, divine indeed. Here is a link. I
http://en.m.wikipedia.org/wiki/Machu_Picchu
Can I have permission to read your blog?
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Yes! Just send me your email address. It's best if it's a gmail address if you have one.
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Nisa - I'm guessing you fared well with all the walking! What an amazing way to celebrate all you've been thru! Very jealous!!! I bet it was amazing and breath taking!
I look forward to many more vacations now that I'm coming back to some sense of normalcy. We are taking the kids to Memphis next week, have a motorcycle ride planned for July, New Orleans in September and hopefully Florida in October! I'm not stopping! Too much to do and see.
I didn't understand why I had 24 nodes removed - surgeons discretion I guess. Only crappy thing is dealing with lymphedema. But I'll deal with it if those little buggers aren't swimming anywhere else in my body! Met with MO yesterday. Blood work all good - see you in 4 months!!! Finally a summer with no dr appointments!
Hope you all have been well. I creep on here, but haven't posted much. Dealing with healing from LVA and noticed significant improvement in my LE since. Fingers crossed it stays positive. Hugs to all!
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bc101 - IST are isolated tumor cells - less than a micromet - I literally only had 20 cells in the sentinel and a half centimeter node further up. Sometimes IST are garbage from cells dislodged by biopsy and collected in the node because it is doing its job, sometimes they are there due to LVI.
Lymph nodes are generally removed in levels - Level 1 is in the axilla, level 2 above 1, and level 3 near the collarbone. Everybody has a differing number of nodes. I had complete clearance but that only involved an additional 11 nodes in levels 1 & 2. I don't think I have a lot, I have always had a tendency to swell, on flights, allergic response, during exercise, in heat and humidity. Remind me why I live in Florida?
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missingmerc, was the cancer that was found a metastasis or a micro-metastasis? The research now is showing that there is not much benefit of an ALND with a micrometasasis. I did have a micro-met and then an ALND in December before the latest research came out. My arm is still sore 5 months later.
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SpecialK - that's interesting about the pathology on your nodes. I seem to remember the nurse saying I had 3 cells (micromets), but I've never seen the actual pathology report for just the node. I'll have to get that one of these days. What is LVI?
Runningfromcancer - my arm is still sore, too. Actually it's the shoulder, but I have referred pain in my forearm. At night it's achy and I can't sleep. I have limited range of motion even though I've been working on my stretches diligently. Please forgive me if I've already mentioned this (I have hormonal brain and post on several threads), but I have been working with PT from 2 different clinics to try to resolve my pain. One said I have rotator cuff issue and another said impingement. My BS ordered an xray, but I'm trying the wait-and-see approach. I'm trying to give it a rest and let it heal, although now that Spring is finally here I'm chomping at the bit to start gardening and yardwork. I see you're in Duluth. I live in Central MN. Been a looooong winter, hasn't it?
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bc101 - 3 cells would be IST, which is defined as anything smaller than .2mm, micromets are greater than .2mm but smaller than 2mm, and macromets are greater than 2mm. LVI is lymph vascular invasion - meaning there are cancer cells in the blood and/or lymphatic vessels leading out of the breast. Your pathology report will usually state that LVI is present or not.
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SpecialK,
I know it hadn't gone into the vascular system. On one report it states, "The sentinel lymph node biopsy procedure was performed and a half single sentinel lymph node removed revealing metastatic lobular carcinoma. There are three small adjacent foci of carcinoma, the largest of which measures 0.13 cm at greatest dimension. No extension into perinodal soft tissue." Really? A half node??? Wth. So I had 1/2 out of 1 positive node taken during my lumpectomy. Talk about minimalist treatment!
So a centimeter is bigger, right? Does that mean it wasn't really an IST or was it even a micromet? At one point I consulted with 2 ROs on whether I should have radiation. The 2nd opinion doc went through my records with a fine tooth comb and pointed out that we didn't know the total measurements of all 3 foci so technically this node wasn't staged. But they didn't have the path report from my other provider with that information so I guess before surgery they decided to call it a positive node and went ahead with the ALND. Whateve ... the cancer's gone. I'm happy about that.
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bc101 - the path report says it is a micromet because it is greater than .2mm but smaller than 2mm. A centimeter is equal to 10mm, so .13cm is 1.3mm. And, yes, yay that it is gone!
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I went ahead with my ALND my one positive node had one area of micromet, can't remember dimension, but the second area of the node was 4mm they called that macromet. Really strange how that ended up because the only invasive tumor I had in the breast was the furthest away possible (behind nipple) and it was only 5mm. So to have cancer cells travel that distance from such a small tumor is what worried my MO. Hence, ALND and chemo for me.
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Xrayalli - I like to think that the nodes stop the cancer from growing elsewhere in the body. Do you have any mobility issues or pain as a result of ALND? Sorry to have turned this thread into such a focus on the topic. Just seems like we share that in common as Stage 2ers.
Hope you all have an awesome Memorial Day weekend!
mjsgumbas - congrats on your all-clear followup!
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Thanks bc101!!!!
Hope you all have a great holiday weekend and spend some time relaxing with family and friends!
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bc101 - I will answer your pain/mobility question - it took a while, like a solid year, for the weird numbness and tingly feeling to go away from my ALND arm and shoulder blade, but I have no lasting issues with mobility or pain. I do have lymphedema in that arm but it does not cause pain anymore, and since I am now on an anti-inflammatory diet I also have far less swelling.
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It is FINALLY looking like spring around here!
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SpecialK,
I'm actually getting some feeling back, but it still feels weird and creepy if I'm not wearing a bra. I've decided to schedule that appt. with a physical medicine doc and an xray. I hate the idea of getting an xray, but I'd like to know what's going on. Yesterday I had a short session with a PT who specializes in ortho and she did some deep tissue massage. That seemed to help. She said I have scar tissue and there's some mild cording. I think that might be part of the problem, but I'd like a full assessment. It's getting really annoying.
Oooo, pretty pic Ruth!! Yeah, it's been a loooong winter here in MN, too! Enjoy the nice weekend
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Still undecided. All I know is small amount in the sentinel node. She felt with the type of cancer I have, and how it responds to chemo, that leaving them in did not decrease survival. My daughter was there with me and is on the side of leaving them. I look at the side effects of ALND and think if I do not have to do that, then don't...but it is scary leaving them in.
At least I got my stinky drain tubes out yesterday. Woot! Still stitched up and the surgical tape has not fallen off, but much better without tubes.
MM
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My mobility in the shoulder is pretty good, have a little numbness stillin my upper arm. My problem is my forearm down to inside of my wrist. I think I babied that side so long my tendons have atrophied. I need to see an ortho doc but having a hard time fitting it into my schedule. I don't have lymphedema relieved about that. ALND is a very difficult decision but I just had to know how many nodes were affected. I do feel like my one cancerous sentinel node was the little warrior inside my body, taking one for the team! Protecting me from errant cancer cells! And chemo is just for good measure.
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I get confused about the nodes issue too. My surgeon could already tell before the surgery that my nodes were affected because it showed up on the MRI and she could feel it. She sent me for a node biopsy before the surgery. When it came out positive she recommended that level 1 and level 2 nodes be removed. She explained that she wouldn't know exactly how many that would be until she got in there since they come in clumps. Turned out she removed 17 nodes and 3 were positive. I don't know about mets or micromets. I was all for getting it all out. Maybe I have an old-fashioned surgeon but I would have been nervous leaving anything behind.
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Alli and AKJ - I agree totally. Get 'em outa there if there's any question at all. There's some comfort in knowing.
My forearm was really tight and sore in the beginning, too. I went to a PT who specializes in oncology and lympedema. It really helped - the pain was gone after just one session.
Has anyone had massage in the armpit area and ALND incision? I had a session on Thursday that seemed to help with my mobility. She pressed really hard, though, and I'm not sure this is the right way to do it. I'm kind of upset that no one seems to tell you what to do about all this crap. They just do the surgery and off you go .... until there's a problem. Little did I know that sunburn can be a risk factor for lymphedema. This weekend I had a slight sunburn and my wrist looked a little swollen afterwards. It's gone down some, but now I'm concerned that either the massage or the sunburn may have given me lympedema. Good thing I have an appt. scheduled tomorrow morning. The fun never ends.
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