Starting Chemo March 2015

ninjamary

Lol...my brain is off. I start rads next week! I went to my "film" appointment on Friday and was a week early. Checked my appt card again and I start on the 31st not the 24th.

I had a follow-up with my breast surgeon and she asked if my tumor spot always felt like this as she was rubbing it. I don't know...I guess? Then we scheduled my mammogram and visit for early 2016. I left there feeling like the cancer had returned. I really like her, but what the hell. Ugh.

Jackbirdie

Ninja- that sucks. Big time. Can you call her back and ask for it earlier so you don't spend the next few months in Crazytown?

Ugh is right! Feel in it for you.

ksusan

Agreed--if she isn't sure that everything's okay, you need an evaluation now.

Trvler

Having a mini freakout. I kept trying to figure out how the BS would know if my nodes were still +. I asked my MO about imaging a while back and she said some snotty thing like 'Has your BS ordered it' (more NOLA pushback). I just felt like I was flying blind. I called to talk to NOLA to understand how all of it worked. I have had the SNB thing explained to me ad nauseum an I just couldn't get how they would know how many nodes to take out. So the BS from NOLA called me. He asked me about getting imaging. I said do you mean an MRI? I had actually tried to get an MRI set up but it is too late. I can only get in the crappy place where they only have a small machine where I tried to go last time and left because I was too claustrophobic and they stabbed me 3x trying to get a vein. He said he would do and u/s when I come there and an X-ray of the node clip. I guess now I am really scared about lymphedema and pain. It is just all starting to freak me out. He said it is almost certain I will have radiation, which I was holding out hope I wouldn't.

Jackbirdie

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Allison.... Breathe.....I think I would be having a bit of a mini freak too. I'm NOT an expert so take this with a grain of whatever. Grain alcohol might be best.

These days, even if they find positive sentinel nodes, they often don't use that as a reason to go in and take a lot of axillary nodes. They know the treatment would be the same anyway. Chemo, which you have already done, and radiation, which you feel pretty sure will be part of your tx plan. And not everyone gets LE just because nodes come out.

The questions to ask are the ones you are asking.

1- if they find positive sentinel nodes, will they take more? Or just note it for rads treatment.

2- if they do, how many? Is there a limit to how many they would take?

3- if the ultrasound you have before surgery shows path response to chemo, will that affect their decisions?

Gather your power and get some more questions answered. And know that the good doctors at NOLA know full well the risks of additional nodes being taken. But their first business is the cancer. You have to accept the order of priority so they can give you the best possible outcome overall, in which getting the cancer is first on their list.

I am breathing with you now, and will dedicate my yoga class in half an hour to you. Sending mojo

Trvler

I know, Katy. Thanks for your clearheaded reply. I am not very clear headed right now. I know it's all about saving my life. But I am just so afraid of how much quality of life will be gone. I have already lost one thing I enjoy doing. (Don't know if it's permanent or not). If I can't work out or travel….well, those are all my things. And you are sweet to even care given how much you have gone through.

I carry on though all of this and I meltdown every once in a while.

ThePrincess

Allison - my understanding is that if the lymph nodes are affected, you get radiation because that's a 100% guarantee cancer cells were all along the path from the tumor to the nodes? I was hoping I wouldn't get rads either :-(

Katy's reply is the best - those are good questions to ask.

neverthought

My experience with doctors is that no matter how nice they are, they live on a different planet than the rest of us. They see such horrible emergencies that it's hard to get them excited about what is a big deal to a non doctor person. So you really have to be persistent and stick up for yourself if you have pain or scary symptoms.

I have crazy anxiety but how would I know that all those random rashes, inability to walk, headaches, blurred vision, etc. are normal during chemo and not a sign of something horrible? My MO and company are probably very sorry that the health system lets you email your doctor's office!

slothabouttown

Allison,

I had a positive node and an aggressive surgeon. He wanted to go in and take a gang of lymph nodes after he found the positive one so 10 days after my left mastectomy surgery and snb I had my right side mastectomy and left alnd with I think 27 nodes removed. Then chemo then radiation. I wear a compression sleeve on that side every day, get manual lymphatic drainage massage and had PT for three months. So far I haven't developed LE in that arm although sometimes it feels heavy to me, but no difference in measurements.

I worry too because LE can develop even years after surgery. And I'm worried about flying, I keep looking at conferences I should be going to over the next year and between the LE anxiety and the tamoxifen blood clot anxiety I've not been able to bring myself to schedule any. Not sure what the point of this post is except to say that I hear ya. Maybe it's a little encouraging to know that I've completed the rads and still no LE? But I totally get that it's scary to think you might be forever compromised by LE.I had no idea at the time I had surgery, which may have been better than the position you're in, armed with the Intel you've learned in this group!

SpecialK

Just wanted to comment about the use of ice for help with pain control. This is not recommended if you have immediate reconstruction with expanders or direct to implant - and I wouldn't do it with autologous recon either. The reason is that blood flow between the pectoral muscle and the skin is crucially important in the days after surgery. If that new blood vessel relationship is impeded by icing you can have skin death, necrosis, loss of nipple if you have had sparing surgery. This is certainly less of an issue if you have opted not to reconstruct or if you are doing delayed recon.

KBeee

Allison, Though I am not excited about walking into rads this week, I think if I had rads in 2013, I would not be here dealing with a recurrence today. I was not a candidate for it since I was node negative (or was sentinel node negative). Our Sept 2013 crew has had a lot of recurrences and in all cases rads were not done for one reason or another. There were a lot of stage III gals in our group and all had rads and none have had recurrences to date. So as much as it sucks now, if it helps in the long term, then trudge through the trenches now so you can have it in the rearview mirror for good. Understand that most of the gals that did not have rads did not have recurrences, but it's just odd that so many from our little group did. Probably a fluke, but a sucky one to be on the wrong side of. I do worry about both the short and long term effects, because I know I am getting a high dose, getting hit hard in a lot of places the max that he can and they pretty much told me that last week. Despite that, I will show up this week with a smile on my face, grateful for the opportunity I did not have last time to prevent another recurrence because I want more than anything in the world to see my kids graduate, and if they had to radiate me every day now until they graduated or until I glowed, I would do it. But I d know...it sucks to think about yet another big step in this ahead of you.

BBwithBC45

My surgeons did not want me to ice, they were adamant about it

SpecialK

If you have a positive SNB, or another indicator that you have positive nodes remaining after chemo, you have choices. You can elect to remove levels 1&2 (the norm after a pos SNB), or leave them in place and radiate them, or do ALND and radiate. You will have to address positive SNB/nodes in some way if you have not had pCR, and even then one of these may still be recommended. Any approach carries some degree of risk, ALND plus rads the greatest, but even developing lymphedema does not mean that you can't work out or travel. I developed stage 1 lymphedema during chemo after ALND. I go to the gym, and have flown at least 20 times since then, including to Europe, you need to take precautions, but you can still do those things

SueH58

KBee - did those with recurrences have anything in common, i.e. grade, type of cancer, positive lymph nodes, etc.?

Sharon, I too am thrilled for you for being DONE! You had such a hard time and deserve so much to have this behind you and start yiour new normal. Congrats!!!

Carrie - I can't offer comments on BMX, but I hope you feel better soon.

I have my first mammogram since dx tomorrow. Am praying for good results.

Then on to RO next week for my tats.

KBeee

SueH, we were all node negative. 2 of us were ER, PR positive and HER2 negative and stage 1. One was triple positive stage 2. It was definitely a complete statistical fluke and I do NOT think this is in any way the norm... Complete opposite. Most are doing great and are back to a very, very happy new normal...where I expect all of us to be at that point. It does make the thought of putting up with rads easier.

SueH58

Yes, and I was borderline for chemo, and am so glad I decided to do it. Blast those cells!!!

Trvler

Thanks to everyone for the input. It gives me a lot to think about.

Jackbirdie

Allison you are counting down the days and hours now. For a long time this must have been a pinpoint in the distant future. Now it's an oncoming train.

Just remember we are all her for you, sending you protective vibes. I am bottling up a bottle of pharmaceutical grade mojo. Bottomless bottle. Thinking if you every day now until end of next week.

Trvler

Thanks to ALL of you. I am feeling a little better today. Sometimes it is hard when the kids are around because I am trying to keep it all together and not melt down when they are around.

Lovemylab

Last chemo. My DD who has accompanied me to 12 taxols!

ThePrincess

WHOHOO!! Congrats on LAST CHEMO!!!!

Msmath

Lovemylab congratulations on finishing chemo!!! It is a wonderful feeling.

eheinrich

Lab! Congrats! and yay for such a sweet daughter

molly1976

Congratulations!!

ksusan

Congratulations!

Jackbirdie

Lovemylab- that is a million $$$ smile!

Ringing the bells for you and sending out the dancing girls.

🎉🎉🎉🎉🎉🔔🔔🔔🔔🔔🔔🔔🔔🔔🔔🎈🎈🎉🎉💃🏿💃🏿💃🏿💃🏿💃🏿💃🏿💃🏿💃🏿💃🏿💃🏿💃🏿

Trvler

Congratulations, Love!!! And your DD is beautiful.

pboi

Congrats lovemylab, and what beautiful smiles on both of your faces!!!

PB

pboi

Allison...glad to hear you're feeling better today. I hope you don't have to have rads if you don't want to, but if you need do, you will get through it. I know I'm just one person, but I had ALND and had 9 nodes out. Rads went ok for me and (knock on wood) and I have so far not had trouble with pain or lymphedema. Thinking of you today...

PB

SueH58

Hi guys. So two things today:

1) For you PFC'ers, when did you start to sleep better? I was so tired yesterday, and crawled into bed with a double dose of melanonin in me and layed awake for 2 hours. I just hate that!

2) Went for my first post-dx mammo today. The girls did great and both got A+s. My tech told me she had had cancer (triple positive) at the age of 29. Like many other young women, she had a hard time convincing anyone there was something wrong until she could feel the tumor. She had a BMX, AC and radiation. She had a particularly hard time with all of it. But, 10 years later, she is doing great. The sweetest young woman. That's how I picture Whitney 10 years from now. Once I heard her story, I figured I was doing pretty good. It's all relative. Still pretty tired today, though, 2 weeks after last chemo.