Stage II w/Lymph Node Involvement
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Here goes Part 2.
First of all, I am going to take a step back here and mention that even being Stage IIb, all of us are more at risk for dying from heart disease than from breast cancer. So an approach that minimizes both is where we want to be. This means weight management and enough cardio exercise to keep my heart strong.
I also refuse to let getting kicked sideways slow me down for the long term.
Now, let me get to the whole lymph node removal discussion. I foresee that most of us will continue to need these removed if any obvious cancer present. I was extremely lucky that, with a huge tumor in the sentinal, only it was affected.
The surgery/lymph node discussion is not just about preventing/managing lymphedema, but also about strength and range of motion. I was thrilled to emerge from surgery with no problems whatsoever. I was sent home with a pamphlet of exercises, and I did them.....more reps than I was instructed to. At some point, I realized that I needed to do both arms.
I was not able to do free weights again for a month, as I had a JP drain. Remember I was cycling etc., so was producing a ton of fluid. As soon as it was removed, I asked my surgeon if OK to lift and she said yes. So I did, but started with 5s, not 10s. When the 5s felt like feathers, I ditched them for the 10s.
The current thinking is that exercise actually helps prevent lymphedema. However, the whole subject is frought with little science and a lot of anger. My take was to go back to my normal activities and expect my body to figure out the lymphatic drainage piece. So far, this has worked. I do watch for swelling, with the real danger being cellulitis. All this can be treated if ever a problem.
I passed a number of milestones such as x-country skiing at 4000' (repetitive motion plus altitude). I was fine flying too. BTW - Everyminute does have lymphedema and she runs marathons.
So DO THE ARM EXERCISES. The thinking here in Seattle is that immediately after surgery is when you want to begin with the surgery I had. I would ask that specifically.
I think general exercise is also helpful.....so walking etc. Because cardio/lymphatic output are related. You want to heal with all that working and some stress on the system.
BTW - there are no good studies on lymphedema. That is, ones where they take a group of post surgical patients and watch them to see who eventually develops problems and who doesn't A recent study suggested that 90% of those with lymph node removal have some sort of issue. However, I don't believe that all these patients require medical intervention. Right now, the assumption is that all this 90% need intervention or it will get worse.
If this were true, I think it would have been picked up by now from observations from surgeons/oncologists, and the standard of care would be to haul our butts into treatment.
So anyway, my counsel would be to exercise as soon as it makes sense, and just watch. I think you will know if you need to go for help. Good luck. - Claire
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Joyce.....
What I found online. So nausea and allergic reaction to Taxol. - Claire
Dexamethasone is often prescribed to patients with cancer. In some cases, the drug is part of the drug treatment for the disease, and in other cases it is used to manage side effects caused by the treatment or the cancer itself. For example, dexamethasone may be given to treat nausea and vomiting associated with chemotherapy.
Dexamethasone may be used to decrease abnormally high levels of potassium that develop in association with cancer. In some cases, it may be used as palliation in leukemia or lymphoma. Because of its antiinflammatory properties, dexamethasone may help reduce swelling in the brain caused by a brain tumor. It may also help prevent hypersensitivity reactions associated with drugs like paclitaxel. Dexamethasone is also commonly used to treat nausea associated with chemotherapy. It is particularly useful with the drug cisplatin, which frequently causes nausea and vomiting.
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Joyce--Looks like you got lots of info. I finished chemo Nov 2010 and it is doable. It was not as bad as I had imagined! In my case, I had FEC-T X6. I was provided Dexamethasone (steriod) to take a couple of days before chemo and then a couple of days after. I also had a couple of anti-nauseas. After my first chemo, I did throw up but it was more due to the fact that I needed a stronger anti-nausea (Emend) and after I started with that, I was perfectly fine. Taxotere for the last 3 was a little harder--more achey pains etc. I'm not sure which chemo you are doing I am just now finishing rads (last one tomorrow) and can't believe that I am at the end --- looking back a few months ago--never thought I would get here. Just proves--we can get through anything. Drink LOTS of water through chemo and try to exercise as much as you can even if small walk.
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Thanks. I am getting it. I appreciate all the pushes about drink water!! get exercise!!!
I need to incorporate that into my head and body as constants. It makes such sense.
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Joyce -- Yes I did have one positive sentinel node, the axillary nodes were negative. I have experienced almost no nausea with chemo.... I take all the meds as prescribed. My onc seems to overprescribe and not wait for the nausea... they put emend and aloxi, along with the steroid in the drip, then I take the steroid and zofran for 2-3 days afterward, and have compazine on hand just in case, and I have only needed it once for very mild nausea. I have been walking as many days as I can handle, and pushing the water and it does seem to help.
It's not fun, it's doable. Everyone will tell you that, but if you are like me you will be terrified to sit in the infusion chair that first time. I took a xanax that day, and my blood pressure was 150/100 (I'm normally like 112/72) and I was in tears. Once they started the process (and the steroids can lift your mood by the way....) I was OK, and tolerated the rest of it just fine. It will be OK, even if it isn't fun. I'm looking forward to finishing in April.
My hair came out around day 16 or so.... I had it shaved the week before, less mess for me, as I had them do it at the salon.
Joyce -- good luck.... feel free to PM me if you want any more info. That first one is hard no matter what
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Joyce, steroids were given to me as part of my pre-meds for nauseau. Each chemo I always was hooked to saline, then decadron. For my first few rounds that was it, then during the next rounds when I switched to Taxotere I also took a steroid morning and night for I think 3 days to reduce swelling from Taxotere.
Claire, so glad your surgery went so well for you and hope it is that way for many others. I myself did not have that easy of a time...not horrible, but a slow process to healing. I was very, very active and fit (and am only in my 20's), and did everything the doctors & physical therapist told me to do but I still feel I am recovering and gaining strength 9 months after my bilateral mastectomy. I am also one of those 20-50 % (depending on which article/stats you look at) of people who get lymphedema. I am very, very dedicated to my post-mastectomy exercises, and now my LE one's and I think there are many things you can do to prevent LE, but that there are some people despite all best efforts that will get it. With that being said I also found walking helpful during chemo. There were some days where I felt good and could walk a long ways, and there were other days where it was an accomplishment to get out and take 50 or so steps. I think the best thing is to try to stay active, but at the same time listen to your body when it says stop or slow down. When I noticed my LE I had just gone back to work and I think I was pushing myself and my arm too hard and it told me so by the pressure and swelling. That is my warning to back off.
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Smile on..... I fully appreciate how relatively easy a time I had with surgery. I think a major part of this was having a lumpectomy, so only a minor chunk of flesh on top of the lymph nodes. (I have seen a lot of surgery too, as worked as an aide on an operating room floor while in college.)
I also know you can't fully predict who will draw the lymphedema card. However, I don't think scaring yourself silly is the approach to take either.
As for exercising during chemo, I took the approach that I might as well be dragging and exercised as just dragging. Again, it was a lot easier for me with less invasive surgery. - Claire
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Thanks Claire. I guess I'm a little sensitive on the subject right now as I'm figuring out that it is not as easy to jump back into things I formerly loved as I would like it to be. I am definitely with you that exercise helps your body and mind cope both through and after chemo. I just didn't want others to read your post and feel like they were alone in not picking themselves up by their bootsraps and getting out there at the intensity that you so admirably were able to do so quickly!
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omg--did someone say they did SIX rounds of AC? You deserve a medal--4 rounds was almost more than I could handle. Although I had a similar chemo the year before for colon cancer, and I think I had just had enough! I was given steroids for nausea with the AC, and to avoid an allergic reaction during Taxol. I lost weight the the AC, because I never felt like eating much, but gained it back with the Taxol, because it didn't give me any nausea to keep me from eating. Advice for the AC--take ALL your nausea meds as prescribed. Don't skip any because you don't feel too bad. Advice for the Taxol--if you get the severe joint/bone pain some people get, don't be afraid to ask for something stronger than otc meds. I took Percocet for the pain and did great on it. Taxol was so much easier for me than AC.
As for drinking lots of liquids, the cytoxin can cause bladder problems if you don't get it flushed out (hopefully your onc or nurse will tell you this). My nurse told me I should be peeing every hour--even through the first night. You'll be awake anyways from the steroids
The hair comes out about 2 weeks after the first tx. I cut mine short--had fun trying a new haircut. I've worn scarves--hated the wigs. I finished taxol in Oct. and I now have enough hair that I could go without a scarf if it was warm enough! My head gets cold really easy!
Good luck to everyone just starting out! PM me if there is anything I can do to help! I go in for my ct scan (for colon cancer) and MUGA (Herceptin) on Monday! Then I'll have a mammo and MRI in April--hoping to finally hear no evidence of disease (NED)!!
Speaking of scans, my onc does a bone scan routinely for bc. I get chest, abdomen and pelvic ct scans for colon cancer ( I was stage 3b).
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Claire, thank you so much for all the info - your story is inspiring and encouraging! I will definitely be walking as soon as I feel ready to after my surgery. I will have a mastectomy and some sort of axillary dissection. (We are still negotiating. I'd like them to pathologize my nodes during the surgery and not take out all of them if there are no micromets.)Smile on - I'm so sorry that you are having a long, slow recovery! It sounds like you are doing everything right - sending you a hug from NYC!0
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I'd like to echo all that has been said regarding exercise and water consumption. I didn't drink enough water or eat enough during/after my first AC and didn't feel very well when I got home. I sure learned after that one what to eat/drink! I took the nausea meds as prescribed because my onc told me it was easier to prevent nausea than to control it. We had a 6 month old puppy when I started chemo so it was essential for me to walk him every day to burn off his puppy energy, even when I didn't feel like. It gave me the push I needed some days knowing that we both needed to walk at least a mile every day, no exceptions. It was a large part of my therapy as well. Drinking tons of water is critical to keep the chemo drugs moving through your system. I finished 4 AC and 4 Taxol on June 4th and feel like I tolerated it reasonably well. I worked full time. I did have some foggyheadedness after the AC treatments but was still able to work. I had my treatments on Fridays and Neulasta shots on Saturdays. Monday/Tuesday I was a little slow and foggy. Wednesday, I had joint pain from the shot but by Thursday I was feeling better. I was able to attend my indoor cycling class in addition to walking.
I had longer than shoulder length, thick hair and the woman at the hospital wig program told me that it would take a week of shedding and clumping before my hair fell out. I chose to have her shave my head between my 2 & 3 AC treatments. I didn't want to deal with it falling out. I had a couple of great wigs and found that some Old Navy jersey scarves that I tied turban style. I wore my wig to work M-F and wore the Old Navy scarves on the weekends. It is important to find headcovering options that you are comfortable with. I also wore a sleep cap at night and had a coolmax exercise cap for walking/cylcing.
All the best to everyone currently doing chemo. Just take it one treatment at a time. My best advice: Walk every day, Drink tons of water and Rest when you need to,
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Anyone on here tried the cold caps for preventing hair loss? I know there is a long thread out there-just wondered if any ladies on here had went that route?
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Hi kriskat, I tried the Penguin Cold Caps and unfortunately they did not work for me. I know many people who have had success, but after the 4 rounds of AC about 70% of my hair was gone. I tried to use with my first couple of taxols but becase I had so little hair left it was too uncomfortable, so I stopped. I now have about 5% of my hair, oh well, at least it will grow back. Good luck with whatever you decide. PM me if u have any questions..Randi0
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Hi All,
1st TX yesterday of TCH, I was there for 7 hours but it all went well enough. As everyone says the anticipation is worse than the actual event. I have felt fine - walked 2 miles with the dog last night and will walk again tonight. No nausea, staying on top of the meds. Took Claritan this morning and went for the Neulasta shot. I am going to start L Glutamine.L Acetyl Carnitine/B6 today to try to ward off neuropathy.
bdavis - sorry it took so long to respond to your question about nodes - I had reached my posting limit. I tend to post late at night and I covered two days but too many posts in 24 hrs! Anyway - here is the deal. My SNB during BMX was initially negative. BS came out to tell everyone surgery was done , nodes were clear. All rejoiced. On post-op path there was a 20-cell cluster in the SN. I was encouraged to have the complete node dissection because it is "the standard of care" by both the BS and onc. I was on the fence about it and my BS said the current thinking goes either way but he used that line, "if you were my wife..." so I did it. It was done about 5 weeks after my BMX as I was just starting to feel OK. I had a lot of swelling and discomfort on that side after surgery due to pushing on the TE which was already tight. I was very afraid of lymphadema but have not yet had any problems. Only one additional node was positive but it was 6mm size. In hindsight I am glad I did it because I couldn't have known at the time that I would have 3 more surgeries in Dec. and Jan. that would delay my chemo until yesterday. I am glad that all known cancer had been removed prior to those additional surgeries.
Kathie
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20 cell cluster?? Not sure what that means, but it sounds larger than my .38mm... Maybe I will google that. After I was told I had a micromet, I asked about taking more nodes and both my onc and bs said not necessary... I am cautious and hope they are too:)
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the most recent studies confirm that with a small tumor and micromets in SNB and radiation and either hormonal or chemo therapy, or both, the survival rate is the same whether an axillary dissection is done or not; in other words, it is perfectly fine in those women to leave the rest of the nodes in.
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Thats what my docs say, but of course I worry... I am in chemo TC x6 and am supposed to get radiation this summer (but may go with PBMX) and then tamoxifen... not sure if they would still want to radiate the node area or not.... My onc says the chemo would cover any rogue cells...
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bdavis---I have similar stats to you and had FEC-T X6 and then radiation X25 (plus 5 boosters). When I met with my RO, he provided me with lots of information on radiating nodes and whether it increased your survival rates/decreased recurrance. Basically, there isn't any significant studies that show that radiating nodes when you have only 1 or 2 nodes positive -- changes your recurrance rates. However, there are studies just starting in Europe and early info shows that there may be a decrease in recurrance esp if you were diagnosed at younger age (I was below 40 at diagnosis) -- but it is minor--I think it was either 1 or 2%. That being said, I chose to radiate the nodes. I figured that I had gone through chemo and all these radiation--I chose to do whatever it took to increase chances that this damn cancer won't come back. Downside to radiating node is potential Lymphedema but Doc said % is pretty low. Ultimately, you need to make decision for what you feel best and what you feel most comfortable.
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kriskat-I used a type of cold cap (Elasto-gel) with my 6 treatments of T/C and I still have a full head of hair. I probably lost about 10-15% of the thickness of my hair, but never had to wear a cap or scarf unless I wanted too. (and no one could tell I was thinning)Now, I'm 6 weeks PFC and where I did lose, it is coming back wonderfully... The caps have different success rates depending on your chemo cocktail and how much of a dosage you are being given...there is a ton of information on that thread if you are interested in trying the caps. If you don't want to go through the whole thread, just start asking questions and the wonderful ladies there will answer them for you! (me too!)
peace and prayers,
Tori
DE COLORES!
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hi all
I have ILC with 2 nodes out of the 5 removed positive, because of the new studie let the other be.
The first breast surgeon i saw ordered MRI and PET scan immediately to confirm no spread since my initial biopsyn showed one node involved, they noticed swollen in mammogram and deduced to biopsy with lump. I think the ILC may have influenced that decision sine it is harder to dedect. Both tests came back clear and both surgeons I saw were very comfortable with lumpectomy. second surgeon recommended SNB first wanted to do full discesstion, I went with the second on the basis of not removing more than needed. WIth only 2 nodes involved i fell into the keep the rest category.
Hi to my feb chemo sisters, i am on round 2 of 4 rounds of dd ec followed by 4 rounds of dd T. It has not been anywhere near as bad as I feared. The steroids are for anti nausea. I get emend by pill, something in IV (really should look next time and write down, they told me first time but chemo brain has wiped it out of memory) i take decatron (steroid) in morning with emend and nurse gives to me just before chemo as well. decatronb dose split last 2 days to avoid the fatigue that can come when it ends. I have not experienced the steroid rush.
I am trying to exercise but finding it hard the first week, am hoping to be able to start walking now that the snow it starting to melt. Have been doing Pilates class but so far not first week, just some stretches.
After Chemo I will have rads then hormone blockers for at least 5 years due to er+ pr+ status. probably start on tamoxifin since I somehow still test premenopausal...
I am drinking lots of water too. especially the 2 days before day of and 2 days after. to keep hydrated and flush out the chemicals. Warm hands help the prink if you don't have a port. I don't have one and those wonderful Chemo nurse got me on first try both times. My center will give you a hand warmer if you haves are cold (from water bottle or just being outside)
Check the 2 threads tips for Chemo and more tips and shopping list for Chemo, they have lots of great tips and suggestions for what to have on standby. The ONC and BS said even though technically all the cancer was removed and margins were clear we do the Chemo because we want to make sure no rogue cells excapes and I have the lowest risk of recurrence or mets possible so Here I am doing Chemo and Kicking cancer Butt - my sisters favorite line of encouragement!
My doctor also said the sentinel nodes did their job and captured the cancer. but we still do Chemo....
I am also on vitamin D since my counts were low on the original blood test.
good luck to all.
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oops forgot I also had the MUGA to test heart before starting EC
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Just wondering how many of you stage II w/lymph node involvement ladies opted NOT to have chemo and instead did radiation with hormonal therapy begining immediately after? Seems this is beginging to be the routine care although not the "standard of care."
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Sereena - I was diagnosed about 1 year before you were... and chemo was not presented as an option at all... they basically said it is in 3 of your nodes - you need it - it will improve your chances of survival from about 50% to 70%. So I did it... did your onc say something different?
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Interesting...I just met with my oncologist on Thursday and chemo is not an option and is in my treatment plan but radiation is only strongly recommended. Just like Starbeauty....it was presented as being needed and increased my percentages.
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Disney - They told me radiation was strongly recommended as well... because of 3 nodes - I could have gone either way - but they said that it was possible they would fail me at the "local" level if I didn't do the radiation. So... again I did it. I burned me so badly that I really can't have a reconstruction - the area so vast that burned - even burned on my back. It concerns me what else burned under my skin.
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Starbeauty,
I will start radiation in the beginning of May, I have read that some of you has been burned really badly. Did it happened during one radiation or was it a result of a lot of them?
When you say "bad" what do you mean? I'm starting to get really scared about this, I will have radiation on my left breast, axilla and up to my collar bone....
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Tell me what you guys think of this - as this just keeps bothering me so very much. I went back in June of 2010 to get a mammo and sono and I was told I needed a biopsy as there was a very suspicious area and there was also a bump on top of my left breast near the nipple. I was very concerned - so my primary sent me to a BS for a biopsy and to also check out the bump. The BS told me that "they just want to stick a needle in everyone" and did not do a biopsy. She also said the bump was a cyst. She said come back in 6 mths....so I was so very relived and was so happy! I come back to her in 6 months just to get it looked at again and she does her own sonogram and finds a tumor in my left breast (where the suspicious area originally was). She did a needle biopsy and it is cancer. She said it was 1.5 cm and I could choose a lumpectomy. I said the bump still concerned me and she said to "take it off my radar" - as it was nothing. I no longer trusted her and said I wanted a BMX. After the BMX they find a 2.5cm tumor (what was supposed to have been biopsied back in June of last year), a 1.5 cm tumor (yes, this was the bump I found) and another .7 cm tumor - plus 2 nodes positive. I keep replaying in my mind what my diagnosis would have been had she done the biopsy and correct dx back in June of last year. I just can't let it go. It bothers me so much. I am now a Stage IIB (but my onc said very close to a Stage III).
My son wanted to go to her office and yell at her and so did my daughter. I had to talk both of them out of it. 0 -
Intwoplaces
I was one of the unlucky ones to get 3rd degree burns which was at its worse 1 week after treatment was over. Radiation was aimed in three spots and a bolus was used as well.I tried everthing on my skin by the 4th treatment I was already starting to blister.By the time I got to my last treatment i was in so much pain I had to do cold compresses and use a gauze bandage in order to put clothes on. I personally think they left the bolus on for too many treatments.Personally I found this way worse than chemo. But I have talked to many other ladies who sailed through it with no problems.
Good luck with your treatments((hugs))
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intwoplaces--talk to your rad onc about your concerns. My RO gave me a break over Thanksgiving (was suppose to have rads that Fri.), and then near the end when the clavicle area was getting really bad he stopped doing that area and did the 5 boosts, then went back and finished the rest of the tx. This gave the clavicle area a break. It seems many ROs don't give breaks and just let the skin fry. There is no reason you can't take little breaks here and there. I also had another 2 day break when the machine wasn't working. My skin got red and a little sore, but not bad at all. I had rads for colon cancer the year before and it about killed me (hosp. 2x), so I think that's why he went so easy this time! Start moisturizing now, and don't stop! I used aquaphor when it got bad.
Thundershowers--I understsnd why you are so upset--it's good you went with your gut and had the surgery! BC is generally slow-growing though, and the dx probably wouldn't have been any different, but you don't know how many more cancer cells escaped and travelled throughout your body during that time. Let's hope the chemo got them all!!
From what I have heard, if cancer is in the nodes it is automatic chemo. There is no way of knowing where the cancer cells have travelled, so we have to poison the whole system in hopes we get it all. You can always refuse chemo, but that would be taking a big risk. As for rads, I had 3 nodes and it was a "gray" area (4 nodes is a definite), but my RO thought there was enough reason to do the rads. Since this was my 2nd cancer in a little over a year, and I'm only in my mid 40s, both my RO and MO wanted to hit me with everything they had. There are SEs I'll have forever from it all, but hopefully no more cancer!!
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Intwoplaces...Sorry for the delay... had to run out... when I say bad - I needed a medication painted onto me several times a day to reduce the temperature of the burn. I happened in the last week - and a declined the last 3 boost days because I simply couldn't stand the pain. The burn stretched from mid-neck to my tummy - skin came off in multiple places, but mostly from under my arm. Up until the last two weeks I was doing fine - then it just darkened and burned. I was told I was in the 1% - and that the majority of everyone else does well - not sure what happened. So mostly on these boards you will see everyone making it through with little or no problems - sometimes you will see emotional problems and fatigue and I had that incredibly toward the end and for about 8 weeks afterward. The skin now just looks tan - but the PS said the blood vessels are destroyed for such an extensive area and she doesn't want to mess with it at all. I wish you well - know that we understand and talk to us if you need support... I felt very vunerable and found myself truly dealing with the loss while I was going through radiation - and that grief and sense of loss added the whole experience. I think I was just beginning to grasp what NED really meant as well... and when I began to realize I wasn't going to ever feel "free" of BC... that also was floating around the room on that table with me. The positive... I made it out the other side of all that... I truly am beginning to find peace and a sense of purpose again - and I am beginning to feel pretty and femine again... vs. a burned, battered, bald thing. You can do it - just go one day at a time and talk to everyone here... they will talk you through.
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