Radiation recovery
Comments
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Oh it's so confusing! Must be a Harvard vs Yale thing. ;-)
(My onc team is at a Harvard teaching hospital.)0 -
LOL...since this was a very short trial (mine was just short of 3 weeks) it did not have the potential to harm me, even if it was estrogen producing so I said ok...if it may help someone down the road, why not? Anyway, I am no longer taking anything so it is all good even if it is estrogen producing.
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Thanks April. I hope that there is a better understanding of the healthcare changes so all Americans are clear. As it is now everyone seems confused on what to expect. I hate to see someone needing care and not getting it. Some work their whole lives, retire, get sick and have no care, this should not be happening anywhere, especially in America. I am not liberal or conservative, I see good/bad on both sides. For me its not political its about Standard of care for all regardless of age, race or income level. I hope you are right!!
I hope you all have a peaceful, healing Sunday!
Kate- Soon you will be there with your family
I hope you get some sunshine and snow which is pretty normal in Chicago!0 -
Lemon, I hope I am right too! With politics, no one can ever be sure what we are going to get. I just hope that people everywhere will have access to the best medical care for their individual situations.........it remains a mystery if that will come to be...praying hard that it will be fair and equitable to all of us.
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April485 you are so right about insurance companies. They started changing very much for the worse in the 1980s and literally ran our clinic out of business with their payment delays and denial tactics. I am relieved to see them being made more accountable and responsible. I believe history will prove the health care reform is a good thing.
Kate have a good trip and soak up all the love you can! It always feels so good to get home again.0 -
April, black cohash? Really? I took that for hot flashes a few years ago. I'd assumed it worked (although not as well as I would like!) because it was a form of estrogen and would therefore be verboten for us ER positives. To learn that it might actually be good for us is amazing. If your MO thinks taking it for only two weeks pre-surgery will be effective, she must think it powerful indeed. Do you have any more info?
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Hi April and Lemon,
Interestingly a long while back we were all comparing the cost of our rads treatments. I vaguely remember mine as being something like $3500 per week. Back east they were charging double and triple that. One of my surgeries was $12,000 while someone back east paid something like $35,000 for the same (basic) thing. It always amazes me. I do think the insurance companies need to be reined in. Seems to me everyone bills more because insurance pays less and no one wins. I have blood tests that bill at $350 plus and the insurance pays $4.50. I don't have to pay anything because that's the amount that was contracted. I think my insurance paid overall something like less than 50% of the total billed. I didn't have to pay anything except a few co-pays because I have great insurance. I feel that's somehow wrong when the gal in the next chair doesn't have as strong an insurance company and ends up paying more than my insurance company and the gal in the chair next to her has no insurance and pays even more than both of us! I believe that April's right, I think Obamacare will address this whole issue, and help people get insurance, and help people get care. And I think that's really needed. I will be completely disappointed if that isn't what happens.........
And onward.....my good news for the day is that when I get my next mammo in a few weeks they aren't immediately scheduling an ultrasound to go with it! that's great for me, because they started doing ultrasounds two months after rads finished because I developed funny lumpy things. This will be my 3rd mammo since finishing rads 18 months ago and apparently my breast tissue is stable enough to only need the mammo....at least to start. Don't get me wrong, I don't mind the ultrasound in the least, and without it I will probably wonder if everything's OK....but I'm taking it as a step toward yearly mammo's, and wouldn't that be great! A couple of years ago I never thought there'd come a day when I would relish a yearly mammo.......
Have a great Sunday everyone.....and hopefully we'll all have good news all week long
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No I don't have more information Brookside. Apparently women with early stage DCIS were found to have their tumors shrink with a short course of this herb so she began a clinical trial. I was not worried about the estrogen because of the short time I was taking it so I said "why not, especially if it might help women down the road" and took it.
I guess they will know if my KI-67 went down cause they took blood from me after my surgery for the trial. I will ask my MO when I next see her after rads what if any effect it had on my tumor. All I know is mine was measured/estimated at 1.2 cm's after core biopsy and after my lumpectomy, it was found to be 5mm's! It had shrunk in half or they had it wrong at biopsy...not sure. But, could have been the black cohosh! I was surprised when I got my path report and saw 5mm's of DCIS when the biopsy measured it as 1.2! Who knows what happened but it did present much smaller after lumpectomy!
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Peggy, my rads (if I went with the traditional course of 6.5 weeks) were estimated to cost in the neighborhood of 15K a week! I have not a clue what my clinical trial of one week will cost, but since I have to have a CT scan every single day, my bet is that it will be comparable at the very least.
CT is one of the most expensive states in the country period. Our gas is 4 bucks a gallon and most of that is taxes. We pay a 6.35% sales tax AND we have a very high income tax as well in CT! We pay additional taxes to the state of about 5K a year on top of the feds!
Our nickname here is the "tax you to death" state. Only MA and NY compare here in the NE! Ugh...everything is so overpriced. We pay almost 4 bucks for a loaf of decent bread here and milk is over 4 bucks a gallon in many places. Eggs are expensive too. I bought some when we were in FL and could not believe the price differences!
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Wow! I'm looking forward to hearing more from you on this!
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So, April, don't drive to California! Tehehe..... our gas just went down 14cents in the past 2 weeks, and it's now only $4.03. Oh, and the sales tax rate here in my town is 8.65% I think, it changes often! I believe income tax is 8% and higher..... I guess we're supporting the sun! It is beautifully sunny today
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I am er positive so I guess I won't be able to take black cohash. I need something because these night sweats are killing me. I get only 3 hours sleep because the night sweats wake me up. Then I don't want to go back to bed to get my hair soaken wet. Normally I wash my hair twice a week. There is a lot of work involved. First I have to round brush my hair, and then iron it. A 1 to 1 and a half hour thing, and oMG I don't want to do it every day. I'll worry about my hairon my trip, My hair dresser is coloring, cutting and styling it for me Tues. Night before I leave and normally it would stay till Sat. Wed. I have to be up at 4am to leave for the airport at 5 I probaby won't sleep at all because I will worry that I will wake up with my pretty new hairdo ruined by being soaken wet
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Hi Sew,
We must have been on the same rads schedule because I finished 18 months ago too. I am glad that you won't have to do an ultrasound. Hugs, Kate
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I wash my hair every day and just blow it dry so I don't have to worry about that I guess. Sometimes on the weekend when I am lazy, I won't shower or do my hair if I am staying in (like today) but usually it is a daily thing for me. Don't have any answers Kate but I guess you could try blowing a fan directly one you while you sleep? I have been getting hot flashes again for the last 1.5 years (and figured out that it was a symptom of bc since others reported the same thing prior to diagnosis!) but I thought it was cause my hormones were going crazy due to my large weight loss (on purpose through WW's) so I did not really think much of it.
I went through menopause when I was 51 and now am 58 so I had not had hot flashes for several years. When they came back, it was kind of a bummer for sure. Oh well, guess I am prepared for tamox/AI's when I start them..lol
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Oh Sew, the west coast is notorious for being very expensive! Especially CA! The terminator really upped that for you I hear..lol
I think I am going to move to a caribbean island or South America when I retire...lol
Oh and HIGH FIVE on yearly mammos again! Life back to normal I hope! BC in the rearview mirror is what we ALL want someday! Woohoooooooooo!
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Sales tax in Santa Monica is 9.5%. I think New York has the highest cost of living, and California is second.
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Hi April,
I sleep with a fan right in my face and still my hair gets soaken wet. My hair is wavy, and I can't just wash it and leave it because it looks ridiculous. I have to round brush it and flat iron it to get the waves out. I guess my next step will be to run the air conditioning. Problem is I already feel too cold from the fan, and will freeze with the air conditioning, but that is the price you pay for beauty lol
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Hi y'all
I'm playing catch up...thread moves way fast!
April- you are good on clinical trials:) I sure hope you are right about the future of medical care...my ins is $$$$, but everyone say wow you have great coverage. They have no idea how much I $$$ monthly for that coverage. Blessed to have.
Kate- I cut my hair for BC. Naturally fine wavy/curly hair...everyone thinks its a perm..not. But sister said I should cut...so I would not have a matted mass of hair...night sweats&limited means to wash and style so my dads barber razor cut my hair. Very sweet of him...owned a well know salon in downtown LA for over 35 yrs...lost wife to BC...I was moved by his gift. Shock at how short, but I get compliments so its okay. It grows fast:).
Oh, I'm so excited...Chicago here you come. Have fun and recharge warrior!
GiGil- sorry about your husbands practice...family members dr & head of med school I hear it all the time;(
Josie- world is so crazy...what is wrong with people...our kids have lost all their innocents and the wonder of being a kid. So sad:(. A gun just makes me cringe. You are almost done...when is your last day and how is your skin? Hang in there!
Brookside- thanks for the info on boosts. Going to ask about mapping 6 more full rads then 5 boosts...skin don't fail me now.
Lemon- healing...cool...calm...speedy renewal of skin, minds, body. You are a brave warrior!
Yeah it's Sunday! So hoping y'all get some good healing R&R!
Except Kate she better be packing pockets...cause we are all gonna!
(((Hugs)))
Cindy0 -
Hi everyone!
I am new to this thread. I finished Rads 1/28/13 and now am noticing pitting edema in the lower part of my reconstructed (with LD flap and implant) right breast. Also tightness under my breast and in the long scar on my back. And stinging and burning, but nothing I can't handle with a little Tylenol. I have been massaging my reconstructed breast to try to reduce the tightness and edema, but no one has advised me to do this. Have any of you faced this problem and what methods did you use to improve the situation.
Thanks so much for your input. MDs don't offer any helpful advice for the problem.
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Welcome SweetCaroline2 -
Wow, you have been on a journey. Congrats on completing rads in January!
I do not have an answer to your question but I would ask my BC team: BS, PS, RO, LE specialist. Ask and ask be your best advocate ...attend a support group and ask!
Try threads for ld flap, stage 3, LE all resources and start your own thread keep asking until you are satisfied with the answer.
Hopefully someone here may know.
Please let's us know when you do have an answer...until then sending healing thoughts (((hugs)))
Cindy0 -
Hello all, Redboots here, a newbie. This is my first post, but I have been reading posts under many subjects since last November 2012 when I had my mammogram and was called back in for a second, then had a subsequent stereotactic biopsy which showed DCIS. Initially, I was told it was a tiny area of involvement, but after a lumpectomy the path report said at least 5cm and still dirty margins. Back in for a right simple mastectomy one week later. Second path showed possible chest wall issues on one margin. BS and RO recommended rads, and now I have 5 treatments left of total 28 to go..... Sigh. So, where to go from here? I will be seeing a hemotologist/oncologist to talk about Tamox or other hormone treatments. I did not have Oncotyping done and do not know if I am estrogen or progesterone positive or negative. My hosp does not test for those if it is DCIS unless requested. Right now I am considering having my left breast taken off just so I will not have anymore worries, or at least FEWER worries about something showing up in the healthy breast. I doubt my Medicare will cover a second surgery for this reason. I am 65, and separated from my husband of 37 years. I am not planning on any future romantic relationships at this time and would like the freedom from bras, prothesis issues, and fitting into my clothes appropriately. Anybody out there in a similar situation??? Love to hear from you. This forum has been wonderful, better than any live support group! Thank you to everybody.
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Hi Cindy,
I definitely am packing pockets, because you all will come with me. Dress warm only 40 degrees in Chicago this week. I'm actually glad, because. believe it or not, I am tired of 70 every day. I went shopping today, and that was fun. I bought jeans, 2 cute tops, and 2 pair of sketchers. I will probably be sorry that I bought stuff here, because I much prefer Chicago's shopping to LA's shopping, but heck I think I'll buy stuff there too. I hope everybody is having a nice Sunday. Hugs, Kate
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RMlulu- Thanks for the kind thoughts and the good suggestions! I will certainly try all of the threads you recommend. Have a great day!
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Sweet Carolyn,
Rmlulu had some great suggestions about people to check with about this issue with your poor breast. As if both it, and you, haven't been thru enough already!. I'd suggest you get yourself evaluated for Lymphedema. Make sure the LE therapist is a clt-lana certified one, as they have more extensive training. It sort of sounds like LE to me. the pitting, or Orange peel looking skin is a sure clue, and the tightness can happen just because of the rads, even without LE and will probably require stretching. So, I think one of them could help you. And while LE is very scary, most of us here that have it have found it's manageable if we just do the few minutes of massage or exercise that our case requires each day. good luck, and let us know. Oh, and the massage you're doing right now can't hurt so keep that up too.
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Redboots - Welcome, glad that you found us, but sorry that your journey has been so difficult. Cancer...ugh:(.
My stereotactic biopsy path report showed that I was +ER + PR and HER2 - so you may want to review for that info or ask your BS or RO or MO. You need to have a copy for your files.
We are close in rad tx. Tomorrow is 23/33 I'll have 5 more full then 5 boosts. My tumor was close to the chest wall so rads were a must. I did not have oncotype test done either.
Does your medical center have an advisor to discuss your insurance coverage? Most will cover pmx ...you may have to ask if that is what you feel is best for you and your peace of mind. Also, most centers provide oncologist social worker which is a great resource to work through our feelings and all the lost that comes with cancer.
You are young...don't write off romance at 65! Or 70 or 75 or 85 love just happens and that is a good thing!
Sending healing thoughts full of luv (((hugs)))
Cindy0 -
Reboots- Sorry you have to be here with us all but glad you found us. I would ask for the info on ER PR Receptors. To the best of my knowledge ER plays a big role in deciding about the hormone therapy. Its odd to me that they wouldnt do it. I am not trying to scare you but how do they know if its necessary if they dont know if its + or neg.?
I wish you well on your decisions, they torture me so I know how you feel.
much love xo
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Redboots- Sorry you have to be here with us all but glad you found us. I would ask for the info on ER PR Receptors. To the best of my knowledge ER plays a big role in deciding about the hormone therapy. Its odd to me that they wouldnt do it. I am not trying to scare you but how do they know if its necessary if they dont know if its + or neg.?
I wish you well on your decisions, they torture me so I know how you feel.
much love xo
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Welcome to redboots and sweetcarolina .
Does anyone else have freckles on the Rads breast that just suddenly appeared?.I seems to be in every hair follicle.Is it my skin turning from red to brownish?
Cindy, I can't say I caught up on my sleep this weekend.My 10yr old begged and I reluctantly or stupidly told her she
Could have a sleepover with not 1 but 3 girls .Needless to say they were up at least until 1:30am.And then I took them all to church this morning.The sad thing was the 2 other girls had hardly ever been to church and actually they paid better attention then my own daughter.0 -
Josie, I think those freckles are "normal". At least I had the little ones which sort of dot all the pores on your breast and look really strange. It did seem to be a natural part of healing. Eventually my breast just turned brown. I seem to recall that they itched occasionally too but I wouldn't recommend scratching! You're done with rads now, right? It also sounds to me like your daughter had a fabulous time at your sleepover. Amazing how fast kids can recover from no sleep, isn't it?
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So who has had chemo so you can let
me know what to expect. I imagine every chemo is different, but a general idea would
be good. I will be getting gemcitabine and cisplatin. I know gemcitabine is specifically for bladder cancer. I know the room will have reclining chairs. Just so you know I am unusual I don't like to give into illness. After surgery I am up in 10 minutes begging them to let me out of recovery. I don't want to recline at all, and I don't want a blanket. I pray the room is ice cold from air conditioning. I hate to be warm. Instead of recline I want to sit straight up and pound away on my laptop as an escape. As for resting I won't give in to that either. If I have low energy I will force myself to be active. My doctor said this kind of chemo won't effect my
hair so i am glad about that. My big problem will be nausea. I get nauseous
at a drop of a hat. My chemo isn't going to start for a couple of weeks, but my doctor already prescribed 2 anti-nausea meds that I have picked up. I can fight all of it, but not
so sure if I can fight nausea. When I get nauseous
I want to take sleeping pills and sleep till the nausea goes away. My doctor didn't give me instructions yet about what to eat or
drink, but I doubt I can eat while taking chemo. That doesn't sound pleasant to me. So, If anyone had chemo I would appreciate advice. Hugs, Kate
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