Lumpectomy Lounge....let's talk!
Comments
-
Hi PontiacPeggy -
I will also keep your husband in my prayers,
.
MarieBernice6234
0 -
Thank you, MarieBernice. Really appreciate that!!
0 -
Hi All -
I didn't know if this is worthy of its own entry, but I received my oncotype score today and it is very encouraging. The score was 13 - well below the score where they start suggesting the chemotherapy as part of the treatment. My MO ordered blood tests to really see if I am post-menopausal. She will repeat the tests a few days ahead of my next appointment with her in about three months or so, So now I have the onco score and will be meeting the radiation oncologist in Wednesday. I am assuming that things should just plow ahead from here. I am hoping that this Wednesday will be the first session and then maybe my simulation the week after. One weird thing is that I had a low grade temperature today - 99.7. I feel fine and it appears not to be coming from the incisions etc. The MO said just to monitor my temperature and anything else that may develop.
MarieBernice6234
0 -
MarieBernice, of course it is worthy of its own entry! Congrats on the oncotype of 13 - matches mine! If you are hoping to start rads shortly, make sure you are stretching that arm. The position you have to hold is harder on the shoulders (uncomfortable, not horrid, for me) but if your lymph site is still tender it could be an issue. Hope you can move forward quickly! It's so nice to knock each one off the list. Do YOU think you are postmenopausal? Are you still flashing?
Just breathe now that you know you don't need chemo!
Hugs!
0 -
Congrats Peggy on finishing your rads!!!! So happy for you.
Sorry to hear about your husband...hope all is well.
0 -
MarieBernice - That's great news about your oncotype score! I'm very happy for you and hope you're definitely celebrating.
I don't know about your medical team's approach but I was told that I would have 3-4 weeks (probably 4) between surgery and the next step, whether chemo or rad. They really want your body to have some time to recover after each step. In the meantime, you can work on stretching that arm and still feel as though you're accomplishing something.
Have a great weekend, even if you do have be a little bit indolent.
0 -
Nash, thank you!
0 -
Marie: that's great news about your onco score, so happy for you.
0 -
Hi Hopeful -
It will be three weeks out from my lumpy on this Tuesday. There still a really fair amount of swelling in my right hand girl so I suppose it could still go either way at this point.I am pretty certain that I am post menopausal, but it is hard to tell because I never had a period and had a hysterectomy at 17. I do have my ovaries though. That is a whole other long story. Any hot flashes that I had were erratic anyhow. I really don't want to go on the Tamoxifen though because according to the MO the side effects are much worse on that one than the AI's. She will then take a second blood test right before my hormonal therapy starts to make a determination.
MarieBernice6234
0 -
MarieBernice, Congrats on the Oncotype Dx score! That is wonderful. I met with my RO about 3 weeks after surgery. They then waited for a week for my Oncotype score to come in, scheduled the SIM for the next week, and then I started radiation the following week, 6 weeks out from my surgery. I honestly don't think I could have done it before then. At 3 weeks post, I was still swollen and sore. I still have some pain now but it is getting better each day. I start PT today to hopefully improve my range of motion.
Good luck with your visit with the RO.
0 -
Hey Ladies,
I just got my Oncotype score. 60 It puts me in the high risk catagory for returning cancer throughout my body. My score was literally off the charts the Oncologist uses. Has anybody dealt with a high score when up until then you were considered low risk?? Confused
I now will be starting Chemo in November. I had origianlly been told I wouldn't probably need it, but the Oncotype has changed my whole treatment plan.
0 -
Shoot - I'm so sorry to hear about your oncotype score, nitengirl1. You're probably reeling from that information and the change in all your expectations about treatment. I wish there were something I could say or do that would help. You're definitely in my prayers.
0 -
NitenGirl1, what a blow! Have they considered re-doing the test? When the doctors thought you wouldn't need chemo and then you seem to so definitely need it, or maybe have a mammoprint test done. Please ask. You'll manage whatever needs to be done. We're here for you. HUGS and PRAYERS!!!
0 -
nitengirl: it really comes as a shock when you're thinking you're getting ready for one plan of treatment (I thought I'd be having radiation next) and instead chemo gets slipped in there. My onco score came back higher than we were expecting too.
Take a deep breath, switch gears, you can do this. Watch for a November Chemo Forum, the gals in my July Chemo Forum were an awesome group of supportive women, both emotionally and also with helpful tidbits of how to deal with the side effects. My girlfriend, who had chemo and is a 20 year survivor, said she was glad I was having chemo, she said she found it reassuring to know that the chemo was going EVERYWHERE in her body and killing those cancer cells off.
When you meet with the medical oncologist, take someone with you to help listen, have a list of questions written down, and ask if you can record (just use the Voice Memo on your smartphone or iPod) because so much is covered and it's hard to remember. All of my docs have been OK with me recording our visit. Ask whether you should have a port placed. I only had 4 chemo sessions, but am so very glad we went ahead and had a port placed, especially since I can't have lab sticks or IV's in my left arm any more. Chemo can be hard on the veins. They have great meds to give prior to the chemo to prevent nausea and vomiting, if you have a tendency at all to even be gaggy when you brush your teeth, tell your onc, it makes a difference in what premeds they order. Knowledge is power, ask your center if they provide a chemo class and if they do, go to it. Read the material on this site about chemo, it's the one web site my oncologist said was reputable and had research based info. Focus on what you have control over now, and try to keep your mind from going to dark scary places - that just wastes precious time and energy. If you read through some of the chemo forums, like the July Chemo, or the August Forum, etc, you'll get ideas of things you can do prior to chemo to prepare.
We'll here for you.
0 -
Nitten, Well Crap, my friend! I am sorry you are headed toward chemo. Puffin and Peggy have given you great information.
My Oncotype Dx is 10, but I started chemo in September. I'm on the Sept chemo thread. Lots of support and good information can be found there. I want to make sure I do everything to kick cancer's ass.
Do you know what drugs you will be given? When I met with my MO, she gave me charts that showed how much chemo would lower my risk of reoccurance. Yours will probably do the same.
Chemo is difficult, but it is doable. Get the port! My first infusion was without the port and a month later, my veins are still inflamed.
Let me know if you have any questions!
Big hugs!
Poppy
0 -
Poppy, how many rounds of TC are you doing, if I may ask?
0 -
Poppy- I am scheduled for port placement. My MO told me I would need it. They told me the combo of chemo drugs to be used but I was numb and tuned out. I will get that info again. I know the hormone therapy is the Tax... that everybody seems to be on.
Pontaic Peg- I don't think a retest is an option, It was sent out for testing with my cancer cells I believe.
I will look for the November chemo club so to speak. Any experience with wigs and types to get or avoid?
0 -
NitenGirl1, I didn't have chemo so don't " chemo 30 years ago and while she had wigs, preferred to wear scarves or turbans. My daughter-in-law also preferred to go wigless with her colon cancer chemo. I think she had a wig but not positive (she lives 2300 miles away). Look up mammoprint and see if that is an option if you think you shouldn't be doing chemo. If you're comfortable with the results, just look forward and check the forums! Good luck, Sweetie!
0 -
nitengirl: Check with your local American Cancer Society office. They provide a free brand new synthetic wig and 3 free caps/scarves. I found a wig there that looks almost exactly like my old hair, same color and style. If you don't have an actual office near you, here's their web site: www.tlcdirect.org
A bald head feels weird on the pillow at night and can get cold. In their catalog there are soft night caps to wear to bed, I got one as one of my freebees and really like it.
Also, check out this charitable organization that gives away a free scarf to anyone who has lost their hair to cancer treatment: http://www.goodwishesscarves.org/request-a-wrap/
My cancer center also gave me a list of places in town that sold wigs - check if yours has a list. One was run by a breast cancer survivor and she was great to work with. She sold a stretchy band that goes around your head, and has hair attached that's like 2" long. You wear it with a cap, and the gal trimmed it for me so that it looks like I have bangs, some hair hanging over my ears, and hair hanging out the back of the cap along my neck. It was great this summer for going to picnics, etc and much cooler than the wig was. It only cost $50, and since I won't be needing $70 perms for awhile I just considered that my perm money for that month.
about the port: be sure and get a prescription for numbing cream to use on your port before lab draws and infusions. You put a glob on the center of the port and tape some plastic wrap over it so it doesn't rub off onto your clothes, about 1 to 1 1/2 hours before they're going to poke you - makes a big difference, my pokes didn't hurt at all.
0 -
I don't know how many rounds of TC I will receive. We are aiming for 4, then will evaluate whether I should go for 6.
I would recommend synthetic wigs. They are lighter and need less styling. The synthetic wigs don't frizz out or go flat with the weather and humidity. I have a short and a long wig, plus wig liners. A good wig should be in the $200-300 range. The caps inside make a huge difference in the comfort of the wig. My insurance covered the cost of my "hair prosthesis". I wanted to have a wig so that I could still feel and look like myself from time to time. Plus, when I was out with my kids, I didn't want to draw attention or make them feel uncomfortable.
I also have caps, hats and scarves. Around the house, I go bald headed more often that not. My scalp is sensitive since I'm still shedding.
I'm not going to repeat what Puffin wrote, but agree with it all. The head band ring with hair attached is called a halo. I'm considering getting one to wear with my hats and scarves.
Poppy
0 -
Hi Nitengirl -
I am also disappointed to hear that you got results that were so different then was expected.I am new to this cancer game do realize it can really change everything. So sorry, if there is any way to get a re-test or soomething, I would go and give that a try.
MarieBernice6234
0 -
Hi Poppyk -
Can I ask why youare having chemonwith an onco score of 10. With a score that low I wouldn't think that the benefits would outweigh the side affects! You are braver than I am!
MarieBernice6234
0 -
MarieBernice,
Unfortunately cancer was found in my nodes. If it hadn't already spread to my nodes, I would not be going through chemo.
Poppy
0 -
pontiacpegg, Congrats on finishing rads! Hope DH is doing better now too.
nitengirl and poppyk, sending good thoughts to you as you start your chemo (((hugs)))
mariebernice, great news on the ono score and even better news of no chemo. Must be a relief!
0 -
Thank you ladies for your comments and support. Can't find a November chemo club yet but read some of the October club. Going to get my hair cut short next week to start the mental preparation. Wig shopping is on the agenda too. Ready or not here I go forward. Rads Dr. appt went wella and as expected (Thank GOD).
0 -
NitenGirl1, Sounds like you are very wise preparing mentally for the chemo. You'll do fine. It may be bumpy. Just keep the goal in sight - killing those damn cancer cells and that will help immensely! HUGS!!!
0 -
Glad to know your rad. appt. went well. Thinking of you as you get your mind around all of this and move forward.
0 -
Nitengirl1: sorry you're joining the chemo club. You'll be one year behind me. Be sure to check out the "shopping list for chemo" suggestions here on the board. If no one has yet to start a "starting chemo November 2014" group, go ahead and start it yourself! Mine has been absolutely crucial to my coping in the past year. We have migrated to facebook at this point, but we are still constantly communicating and offering truly wonderful support to each other. I honestly cannot imagine how I could have coped without "my gals."
Well the good news about your onco score is no second guessing! As you navigate the chemo journey you'll know you had to be there. Another resource to use on this site are the ones specific to your treatment. I read and read and posted lots of questions to the cytoxin/taxotere thread for specific SE of my treatment. Really really useful! It's so confusing for ourselves as patients and in trying to communicate with others when you're early stage, but need chemo. The entire pink-ribbon, catch it early and all is well paradigm gets turned on its head. So hard to explain that you've got an aggressive cancer, especially when there are the triple neg girls out there with scary aggressive cancers. There are so many shadings involved in our diagnoses: this disease just defies simple descriptives.
I bought several wigs: one from a fancy cancer-only wig shop, a couple for $30 at a local wig shop in an "African-american neighborhood" (those sisters REALLY know wigs!!!), but my absolute favorite head covering was from Etsy: a woman in New Zealand makes lovely cloches that are ever so 1920's and comfortable, elegant and so pretty! It helped that I've always loved hats so I already had ten or so to choose from. What's funny is now that I've re grown some hair I hate the idea of wearing hats!
You'll do fine. All I knew about chemo was from tv and movies, i.e., I didn't know a damned thing. I "knew" I'd lose weight of course- naw. I "knew" I'd vomit- not once. I "knew" I'd just be trying to survive, not live- nope. There were lousy days sure, but no it wasn't that bad. They've got a whole boatload of drugs to help you get through it- and they work!
0 -
palameda and nittengirl, I thought the same thing when thinking about chemo. All I knew and thought was the vomiting (not once either), loosing weight and looking sickly (nope not either). My fear was becoming an invalid (read, in valid). I went out to dinner (not until about4 day after) went to yoga, walked, had regular meals (although get ready for weird/bad tastes, water tasted terrible, pizza and spag sauce was better) I'm kind of a foodie so I read and ordered 2 good books, "kicking cancer in the kitchen" and the "cancer fighting kitchen". Anything you can do to have some sense of co trol helps. Drink lots of fluids (had to do lemonade as water was bad). Good luck. Keep posting and asking questions. I was so scared (read terrified!) but now I'm done and doing well! Find different threads here and keep track of each other and these women will become yiur friends and support system
0 -
Hi everyone, I haven't been around this forum for awhile. As you can see I won't be a lumpy for much longer. My margins weren't clear and all 3 sentinel nodes were positive so I will be in limbo land again after UMX and ALND until I find out path report. I was thinking the same thing as you, nitengirl and will get hair short. BS said I could need chemo and rads but didn't say for sure on either one. I almost think it would have been better to talk to PCP about path report then get crying over with and then ask BS all the questions that came with a clearer head!
Thanks for the chemo info Palameda and Lisa. Some well meaning people have told me I will need chemo since 3 nodes are positive and maybe more. I don't know if that's true? I've tried to follow the chemo posts but got worried about how I could handle things here at home if chemo side effects were bad. I'm feeling much more hopeful now and I know there are no guarantees but thank you so much for sharing you're experiences!
0
