Starting Chemo in December 2013
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for those facing radiation and still have some uncertainty here is the summary of a recent Labcet article supports RT for any positive LNs Barbara
Effect of radiotherapy after mastectomy and axillary surgery on 10-year recurrence and 20-year breast cancer mortality: meta-analysis of individual patient data for 8135 women in 22 randomised trials
The Lancet, 03/24/2014Postmastectomy radiotherapy was shown in previous meta–analyses to reduce the risks of both recurrence and breast cancer mortality in all women with node–positive disease considered together. However, the benefit in women with only one to three positive lymph nodes is uncertain. Authors aimed to assess the effect of radiotherapy in these women after mastectomy and axillary dissection. After mastectomy and axillary dissection, radiotherapy reduced both recurrence and breast cancer mortality in the women with one to three positive lymph nodes in these trials even when systemic therapy was given. For today's women, who in many countries are at lower risk of recurrence, absolute gains might be smaller but proportional gains might be larger because of more effective radiotherapy.
Methods
- The authors did a meta–analysis of individual data for 8135 women randomly assigned to treatment groups during 1964–86 in 22 trials of radiotherapy to the chest wall and regional lymph nodes after mastectomy and axillary surgery versus the same surgery but no radiotherapy.
- Follow–up lasted 10 years for recurrence and to Jan 1, 2009, for mortality.
- Analyses were stratified by trial, individual follow–up year, age at entry, and pathological nodal status.
Results
- 3786 women had axillary dissection to at least level II and had zero, one to three, or four or more positive nodes.
- All were in trials in which radiotherapy included the chest wall, supraclavicular or axillary fossa (or both), and internal mammary chain.
- For 700 women with axillary dissection and no positive nodes, radiotherapy had no significant effect on locoregional recurrence (two–sided significance level [2p]>0.1), overall recurrence (rate ratio [RR], irradiated vs not, 1.06, 95% CI 0.76–1.48, 2p>0.1), or breast cancer mortality (RR 1.18, 95% CI 0.89—1.55, 2p>0.1).
- For 1314 women with axillary dissection and one to three positive nodes, radiotherapy reduced locoregional recurrence (2p<0.00001), overall recurrence (RR 0.68, 95% CI 0.57–0.82, 2p=0.00006), and breast cancer mortality (RR 0.80, 95% CI 0.67–0.95, 2p=0.01).
- 1133 of these 1314 women were in trials in which systemic therapy (cyclophosphamide, methotrexate, and fluorouracil, or tamoxifen) was given in both trial groups and, for them, radiotherapy again reduced locoregional recurrence (2p<0.00001), overall recurrence (RR 0.67, 95% CI 0.55–0.82, 2p=0.00009), and breast cancer mortality (RR 0.78, 95% CI 0.64–0.94, 2p=0.01).
- For 1772 women with axillary dissection and four or more positive nodes, radiotherapy reduced locoregional recurrence (2p<0.00001), overall recurrence (RR 0.79, 95% CI 0.69–0.90, 2p=0.0003), and breast cancer mortality (RR 0.87, 95% CI 0.77–0.99, 2p=0.04).
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good morning ladies ! I'm feeling better. No fever but I'm still coughing pretty bad. Still a go for DD Taxol #2 tomorrow though. So nervous about it. I had such bad bone pain with the first one. Not looking forward to that again.
Is anyone else just really weak? I shake just picking up a gallon of milk. And I have such a difficult time picking up my 2 year old son. I wear myself out getting him into his car seat. It really frustrates me to be so weak.
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Rhgsr - happy to hear all things are still a go, despite the tiredness I hope you are feeling ok, I am a week out from my last chemo and am a wreck, tired... ive been catching up a lot on sleep, and weak, no strength at all, I guess 16 weeks of chemo will do that to a person. I feel like I could sleep for days.
I did my photo shoot yesterday and felt like shit, I had to keep going and laying down on her couch.. thank goodness I know her, I am not medicated yet for being diabetic they are watching me, but I checked my sugars when I got home and they were quite high so I know that was the issue, will have to stay on top of that. Still anxious to see what we got for shots.
crazywabbit - I started to read your post then gave up, I wasn't absorbing any of it....LOL as much as I wanted to, I will be starting rads in mid april.
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Kj...I gained 15 pounds since this whole thing started. I stayed stable on a/c, but gained on Taxol. I am frustrated about getting my port removed. I called my surgeons office when I found out I was having my last chemo on March 17. Her nurse practitioner, (the one who sets everything up) told me it was a very simple procedure and she PROMISED me she would fit me in the schedule after my blood was complete and showed that I was fine. My surgeon operates the second and last weeks in the month. That would mean I could get it out this week. My mo office called her on March 17 so she could set it up. I called her last Thursday saying that I would be going for blood work this Monday. never heard back from her. My mo contacted her again on Monday to say that my blood work was fine. She got back to me yesterday and said that she couldn't fit me in this week. It was looking like April 11. WTF???? I left her a message saying that I would probably be starting rads on April 7. I didn't want this to mess up my rads schedule. I would like to have it done this week. I haven't heard back from her. If she messes me up and I have to start rads a week later I'm going to be livid. This port has bothered me since it was put in. It sticks out in my neck and is very tight and gross. I want it out. Sorry for the rant. I know it is trivial compared to other's problems.
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Barbara - Thanks for the info. on rads. I have my CT Scan and setup appt. on Fri.
Holli - Glad you are feeling better and hopefully by tomorrow you will be ready for chemo. Taxol gets progressively more tiring. Running around after a 2 year old takes a lot of energy. I remember those days, moms don't get a break. Now that I am finished with chemo, I am feeling stronger everyday, but still dealing with very achy legs.
DJJ - Thinking of you, I am really sorry that you are going through such a hard time with the Taxol. I hope that your MO can get something figured out that will work for you.
Kim
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mikesgirl- I have learned through this ordeal that nothing is trivial. If it concerns you then it is absolutely valid. I'm sorry for your frustration. It irks me when we put our trust in someone then they let you down. Rant away.
Speaking of rads... How long of a wait are y'all getting told it will be between chemo and rads? My MO said 4 weeks. But I thought it was more like 2 or 3. Of course I had my RO already lined up in December (I'm a planner. Cancer really screws up plans) but he up and retired on me last week. So now I'm not sure what to do. Supposedly his office is getting another RO. And there is one more in my town but they don't take my insurance. So we are trying to get approval from insurance to go to an out of network provider since the only other ones are over an hour away. I can't afford the gas to drive 1-2 hours one way 5 days a week for 5-6 weeks. Plus I can't find the childcare for that many hours a day.
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RHGSR, You can start rads as early as 3 weeks after your last chemo. I was told 4 in the beginning too. I am getting my mapping (tattoos for where the lasers need to go) done tomorrow. I also wanted to share some info on reconstruction. It is totally up to you ladies so please do whatever you want. I just wanted to share with you what I learned as the years went by after my recon 6 years ago when cancer reared it's ugly head the first time. I had a double mastectomy with immediate reconstruction. (No chemo or rads was necessary. Or that is what they thought at the time.) When it came time to have the expanders replaced with the silicone implants, I couldn't have been happier. I had nipple reconstruction a short time later. This is something I regret. In my case, the nipple only lasted about a year. Meaning.....They take some skin and form a nipple using stitches. There is nothing else creating the pucker. Over time, the part of the nipple that sticks out flattens. So, 6 years later, my nipple is completely flat except that I know where they used to be because of scar tissue. My tattoos are also very faint and barely noticeable. If I had to do it all over, I would only have the tatoos done. I will have the tattoos done again after this tissue expander is replaced with a new implant. (I had to have an expander put in place of my implant when this new tumor was removed due to rads.) Just thought I'd share.
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Barbara, thanks for the article, I'm one of those on the fence 1-3 nodes and a small tumor 1.8. I have decided no radiation, have read many articles and met two RO who both say it would have a small benefit, and also both say typically it's not recommended. I'm not understanding the percentages in the article. Others I've read say 3-8% increased benefit. I have wide and clear margins from surgery, and like I told my MO yesterday isn't this what chemo is to be doing? Find any strays? I understand for me there is a small benefit and of course never a guarantee I won't have a reoccurance no matter what. It's been a difficult decision for sure.
Talked about tamoxifen with MO yesterday, will do the blood test today with normal one to see if I'm pre or post menopausal but she recommends tamoxifen for first 3 years then likely Femara.
Mikesgirl thanks for the info on the nipple and great timing I meet the PS today for follow up and to plan my perm implant surgery. I will ask her about the nipple, I can see how it would go flat and may not be necessary since I have no plans of modeling!
Another week...another one down tomorrow!
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Kimie - You have gone through a lot during your 16 weeks of chemo. Your body must need the sleep. I can't sleep worth a crap right now, I wake up all night either with night sweats or leg aches. Thank God for coffee. I hope you get your blood sugar under control.... frustrating.
Mikesgirl - Is your port where they are doing rads? Mine is on the opposite side. I was told that we can do rads with a port. I hope that scheduler gets you in before the 11th. I plan on getting my port out when I have the PS. I agree, the ports are ugly, and for me hard to hide with my shirts. Also, my purse hits it when I am shopping. Keep me posted.
Kim
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Kj...No my port is on the other side. I can't wait until the rads are done to get this thing out. It needs to come out asap. The port isn't the problem for rads. It's a problem for me:) I'm mad because she promised. She also had plenty of time to fit me in. She could have scheduled it, and if my blood work wasn't up to par, rescheduled. When I get it out it will consume the day. It takes an hour each way to gethere and back. My rads will be scheduled for the same time every day for 6 weeks. That's why I think they may push my rads back a week if this doesn't come out before they start.
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YAY!!!!!They just called and I'm getting my port out Friday morning
I don't like being pushy, but sometimes you need to fight for what you want. -
The point of posting the article was to say that RT with even one lymph node involved has shown significant reductions in recurrence and death rates. (RR <1). Of course the absolute risk is small in some cases but the reduction is there, just need to weigh the risk of RT vs the recurrence risk. I just cut and pasted the full abstract for informational purposes.
In my case with the lobular cancer having a high rate of occurring in other areas of the remaining breast and 7/13 + LNs it was an easy decision for me. I get 3 weeks off after chemo, the third week I get the simulation (CT scan and marking the first and hopefully last tattoos I ever get). Start the RT 4th week. Can not remember how many treatments in total but at least 6 weeks worth.
The breast RT is done in a supine (lying on stomach) position at the CTC here. Found to reduce the exposure to the lungs and heart significantly over the older way f doing it lying on your back.
I am very lucky that the CTC that covers most of the north central part of PA is located just 6 blocks from my house.A lot of others drive 1-2 hours to get there. Starting next week, if the weather permits (and my leg neuropathy does not get worse I will walk to my chemo on Thursdays and just call to get a ride home. I am tired of asking friends to buddy me each week, although they offer to go more times. I think I would like to just go alone for a few times. I will have someone go with me the last week if for no other reason then to help me carry in some trays of goodies for the staff.
Starting to get my mind ramped up for another treatment tomorrow, need to be there by 7:30 AM. The week goes by fast.
Barbara
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Barbara- thank you for info! I have more than four nodes positive, and the info was awesome to read!
I have a way to go before rads. 3 more AC. My DH's brother and his kids, 14 and 12, have been at our house since Friday. They leave tomorrow. I am exhausted! I have to clean like 4 times a day behind them:(. Then, venting here, my 15 month old has been sick since Friday too! Got worse yesterday, so I took her in to Dr. Strep, double ears and diarrhea poor baby. She is sigh a trooper but ugh. I am ready for tomorrow to see the company go!! The boy who is 12 is so immature. He pouts and wants everything his way. Way to old for that. My 5 year old got a big trick this week in tumbling. Round off back Handsrping in case anyone knows lol. Which is huge for a 5 year old! The boy just keeps going on about how he can do a flip on the trampoline. Really? Jealous of a five year old? I coach cheer and did gymnastics for 10+ years, this is a BIG deal to me and I just am annoyed that he is rude about it. And no one corrects that behavior! I sound mean. I am just tired and really don't think a week stay for is to entertain anyone is a smart idea. Vent over lol!
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Boy that is a lot to ask of you to have guest for a week while you are undergoing chemo, esp the AC part of it. My sister came to visit for 2 weeks while I was on AC and she did absolutely everything for me while she was here. All the shopping and cooking. She even stocked up my freezer with meals for several weeks.
I think I would have told my husband to send them to a hotel after 2 days. You have enough with taking care of your own kids to expect to take care of company. Hope you get a change to rest and your little one gets better quickly.
Barbara
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wow, y'all have been busy posting!
I hope you all that were having terrible SE's are getting through them.
I still haven't heard back from my RO from the 17th to start rads...grrr. Will be calling them tomorrow if they don't call me. Have port removal scheduled for 11th...cannot wait!
I am now 6 wks PFC and still have low stamina, but no more heavy legs or shortness of breath. I think I feel some stubbles on my head!! YAY!
I have managed to lose 3 of the 9lbs I have gained since chemo. Trying to get rid of it before I start HT.
Jodi, I hope things settle down for you! You young moms sure have a lot on your plate.
holli, glad you are feeling better! nice that you are home:)
yay, mikesgirl! glad you are moving forward with port removal! It feels good to be getting something done!
kimie, hope you are feeling better soon and your bloodwork is good.
You all are my lifesavers!
((HUGS))
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The lumpectomy and radiation go hand in hand, even with no lymph node involvement, it's a sure thing. It's the masectomy and lymph nodes that have been questionable. The RO assured me the heart is more protected now, and 2nd cancers from radiation are not what they used to be...but when he said 1 in 3 can get lymphodema, that made me nervous. I don't have lymphedema, but it can come anytime, I still have no feeling under my arms, sometimes a tingle, sometimes a sharp poking pain, and still have some cording going on, nothing like it was, but I'm wondering if this is how it will stay forever. I plan on wearing the compression sleeves whenever I fly.
Jodi, you must be a patient woman, I would have shown the company the door after the first day! Last thing I want to do is entertain people....I think I'm grumpy today..Wednesdays do that to me. Get this SH*T over with already!
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My legs have hurt all day, I didn't sleep well last night. I am not productive at all today.
Mikesgirl - Okay, now I want my port out. Glad to hear you got the date you wanted.
Barbara - I will be on my back for Rads - Getting my TE reduced tomorrow. I have never had lung issues, and don't know that the other is an option at my facility. I will ask. Thanks for all the info. you have really done some research on this.
keepthefaith - Nice to hear from you. I am so looking forward to my legs feeling better. I cannot sit at my desk today as they hurt so much. I will make myself walk this evening... not that it makes my legs feel better, but I am on a weight loss mission before I start ht too. I meet with a homeopathic MD on the 1st. I am interested to see what he thinks I should weigh. Good job on your 3 pound weight loss.
Kim
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ladies I did it, I had my photo shoot yesterday, I asked a photographer friend to take some images for me, to document the struggle we all face, also hoping I can encourage other women to embrace what our bodies are going through and maybe inspire them to do the same. I went out and had my makeup done, had my toes done and then went to her house for some shots, despite having to go and lay down every few mins she did a beautiful job. Pretty sure the blood sugars were reeking havoc yesterday. I might as well add a diabetic diagnosis to the shit storm, it runs in my family, but that's one thing I can control when I get better.
Jodi - how are you entertaining company .. my god woman, I'd be like get your own shit,.. like I sad before you are obviously dealing with ac better then me. I envy your strength in pulling that off.
crazywabbit - so glad you posted the article I just need to reread it when I can focus.
keepthefaith - maybe its time to get nasty on the port removal.
mikesgirl - yay to getting mrs pain in the ass port out..hugs
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Absolutely gorgeous Kimmie!!! Jodi, sorry you had to deal with company. You would think they would be sensitive enough to what you're going through to not stay with you. Let alone pick up after themselves. I couldn't have done it. I would have said no up front. God bless you.
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kimie- what an amazing idea!! You look beautiful.
Jodi- I know how awesome it is for a 5 yo to get a backhand spring ( is flip flop too old school?) Way to go!! Yes , I don't know how you did company.
Mikesgirl- I'm glad you got scheduled to get that port removed.
Barbara- I'll be sitting with you in the chair tomorrow! I'm feeling better. But still coughing. I hope I don't hack through the whole thing tomorrow.
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jackieak - You have to make the decision that is best for you. I don't have an option to not have rads, too many positive nodes. I worry about lymphedema.
Mikesgirl - Missed the nipple post. Thanks for the info. I want to use that tattoo artist in New Orleans, any excuse to take a trip there.
Jodi - You deserve saint status. I can't believe that they asked you to babysit in the first place.
Kimie - Beautiful pics.
Kim
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Kimie, you look gorgeous!!
Jodi, You are brave to have company. They should have been waiting on you!
Mikesgirl, yay! Port out. I envy you...ten more months with mine :-(
I had my sonogram yesterday. My tumor is the same size it shrunk to after four weeks of chemo but instead of a solid black its a light grey. I was upset that is was still there at all after all this chemo and the Perjeta that was rushed through FDA because its ability to get a Pathologic Complete Response. My BS said that it has responded to chemo great and just because we can still see it doesn't mean there are any cancer cells still alive. We won't know until my Lumpectomy which is now scheduled for May 8.
I got a phone call tonight from the Avon Breast Cancer coordinators for the walk I'm doing May3-4 (or being pushed by friends depending on this neuropathy) and I have been asked to speak at the ceremonies. Tell my story. I feel honored and freaked out. Did I mention it's in front of thousands of people!!!!! I think we need to change the name of our team. I don't think I want to stand up there with "The Triple Nipples" on our t-shirts....but I'm still wearing green
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DJJ- what an honor. You will be great. I had to giggle when I pictured you standing in front of a microphone in a green triple nipple shirt!!
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Kim you look GREAT. What fun t have the photos done.
I guess I am lucky to have very little problems with my port. Gets a little tender with a lot of heavy arm lifting but I have such crappy veins that I plan on keeping mine in for while. Getting it flushed every 3 weeks will be no problem.
Question for lumpectomy gals. Are any if you getting mammograms before RT or after. Mid May will be 6 months from my surgery.
Barbara
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Dj- Yes!! You have to keep the name!! What an honour... You will rock that girl...
My god you guys... I don't know what I'd do without our little thread.. Love to all of you.. xo
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Kimie, you look gorgeous...very awesome.
DJJ, give em hell with that speech!!! Wish we could all hear it...awe you gals make me teary eyed tonight.
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kim- great pics!
I am not babysitting:). DH's brother is here too with his kids. I am in bed. Feeling run down after I took the girls to tumbling. They are suppose to leave tomorrow. Going to stay in and rest all day! This was a very hard week. Sucks but I made it through. Just hope my WBC didn't take a hit because of all of it.
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Kimie - stunning!!
DJJ - love the name! Congrats on speaking, you'll do great!
To those getting the ports out - so jealous.
Rads are a must here even with MX. 9 positive nodes.
Jodi - great news for the 5yo! Rest up, sounds like you have more than earned it.
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kimmie, love the pix. You'd never know you weren't feeling well that day!
Jodie, hope you are getting waited on now!
DJJ, my lumpectomy is also scheduled for May 8. I'll also have the port in for another 9 months. Luckily, the port doesn't bother me to much.
I'm scheduled for mammo & bilateral MRI pre-surgery. There are calcifications on my left breast that are on 6 month watch, that's the reason for the bilateral MRI. I try not to freak out about the left, but it was my last 6 month follow up mammo that led to the right breast diagnosis . . . I'm waiting on genetics results too. So there's still a chance that I'll go the BMX route.
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kimie, love the photo shoot!
DJJ, good for you for doing the speech and the walk! Must post some pics! You will be awesome!!!
Barbara, regarding the timing of mammo: my BS (nurse) wanted to do it in 6 mos from surgery, which ends up being during rads in April...? I questioned my RO about it; he said to wait 5-6 mos after rads. I asked my RO to confirm with my BS. Anyway, RO said bc my breast tissue will not be "normal" for a while after rads, that it will be irritated, inflamed, whatever, not to do it now. According to my RO, my post-rads mammo will be my new baseline. I hope I'm not messing up by waiting...I guess I trust my RO in this bc he is a specialist in radiation. If there were a tumor, I guess 6 mos won't make that much difference anyway. I didn't want my boob squished while it was red and sore anyway!:). BS was ordering a diagnostic mammo, not a screening....found that kind of odd since they shouldn't have anything to diagnosis... I hope! Would like to hear what others are getting from their Dr's also.
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