MIDDLE-AGED WOMEN 40-60ish
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My primary doc called today and said she preferred to get me into Beth Israel. She was working on it this afternoon. She said she would do the chemo despite the onco score because of the nodes. I don't have a problem with that, but I want the right chemo. I will be glad to get another opinion and get a plan and move forward. I was really out of sorts today so I did some retail therapy at Marshalls.
Paula66- I want to have the BRCA testing too. I have 2 sisters and 4 kids and 5 granddaughters. Did your insurance pay for the test?
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Dianarose my insurance did pay for it. The first time they denied it. But my onc worked it out so they covered it. Its a pretty expensive test. I was lucky and by then most of my deductible was met. So my out of pocket was alittle ovet $600.00. They call and let you know if the insurance will cover it before they proceed. They also worked out a payment plan so I paid on it monthly. Im so happy to finally have that bill gone.
Thanks NM, I still have troubles trusting the medical community and I guess this is why I would rather turn to you gals for advice. My daughter is 22 and I just want whats best for her. The same goes for my son who is 19. He is still abit imature and I don't think that now is a good time for him to persue this, but my daughter is at an age where I feel she needs to start looking at her options when it comes to BC and prevention.
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Dianarose & Lisamarie - have you tried the amazing Orange Essence Dried Plums - formerly called "prunes" - VERY tasty. They always help me with travel or pain-med-related constipation...
Dianarose - I'm with everyone who wants you to have a second opinion from a medical oncologist, hopefully one who has some experience with ILC and chemo. Is Beth Israel a good venue for that?
My doctors pushed me to have BRCA testing because I was 45 at diagnosis - it was covered by my insurance, and I came back negative. This wasn't surprising because it's kind of the wrong kind of cancer for BRCA, and I don't have the right gene pool or family history. I still think there may be some genetic link that they don't know about, due to my lack of known risk factors. Or possibly they're going to find out about a new risk factor, such as drinking a lot of Pepsi in one's 20's, or chewing Orbit peppermint gum for years, or excessive amounts of chocolate during pregnancy...
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Paula66-At 22 your daughter may want to meet with a genetic testing counselor and find out about getting BRCA tested herself. Very personal decision but one she needs to know exists for her. Given that males are at lower risk even when at high risk your son should be fine not dealing until he gains the maturity necessary. Just remember that all you can do about all this is give your kids the info, make sure they understand the importance of it all and what choices they have and pray they choose wisely for themselves regarding testing and monitoring.
Kleenex, you are right that there may be (are) mutations that we don't know about yet. One of the results the BRCA testing can have is finding mutations of unknown signficance. And there are probably a million or more other things that influence the development of cancer. We'll probably never know for sure.
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I sympathize with you gibby, I am a very active person. I walk on a regular basis , I work out on my bow flex weight machine regularly,kayak, hike and do aerobics. I have had some drawbacks because of my very unpredictable past year but I was getting back on track when I found out I had bc, I was diagnosed with IDC. I just found out that I will be having an expander put in at the same time of my mastectomy. But the surgery and following treatments will put me even farther behind. I miss being so active and cant wait to be back to normal again, feeling like myself.
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Welcome, catno! I think you are posting to a comment on a page way, way back there. Hurry and read all 600+ pages to catch up. Just kidding. We will quiz you, however. Still kidding. Seriously, we have a couple women right now that just got their expanders in the last couple weeks, so you will get support here.Let us know when you will have surgery.0
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When I got my Genetic testing done, they said that if I was positive, my sisters should be tested. He did say that my brother could be tested for 'his daughters' chances of carrying the gene. I was negative for the 2 known genes, but was told to keep up with genetic breakthroughs as there is bc and ovarian cancer in my Dad's family.
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I tested negative too but with my family history they said that there could be a genetic connection that they're just not able to identify yet so The genetic counselor suggested that all of the women in the family should be aware of the higher risk possibility. All of the women in my paternal grandfather's family for the last three generations have died of either breast or ovarian cancer. I'm the first in the fourth generation to develop cancer.
Thank you everyone for your prayers and good wishes for Julia! She should be moved out of the ICU tomorrow. They were having a difficult time last night and today keeping her pain under control but it's better this evening thankfully. The doctors say that she won't need chemo since she had that HIPEC procedure where they heat the chemo and circulate it through the abdomen for two hours after they finish removing all the visible cancer. Hopefully, that took care of any stray cells that were missed.
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My mom was dx with bc about 16yrs ago. She tested negative for any mutations. I have now tested positive for a mutation found since then. So they are definitely finding new and different mutations as they continue to research. We are testing Dad just to be sure it didn't come from his side. There is also a possiblity of mom having some banked DNA that they might be able to test.
One thing to keep in mind if/when you or your children get tested is insurance descrimination. In the states GINA prohibits discrimination based on genetic information in relation to health insurance and employment, but the law does not cover life insurance, disability insurance, and long-term care insurance. Canada has yet to pass such a law.
LCBarb - Praying for Julia's continued recovery. Glad that they were able to get the pain under control and that she will be getting out of ICU. I hope that they were able to get rid of any stray cells with the HIPEC.
Hoping everyone has a great day!
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I have been having intermittant problems with the network connection on my computer. This time it took 60+ minutes with tech. support, and son taking over for me on the call. I have a non-B/C question to throw out there...Do any of you have the AT&T Uverse set-up. If so, what are your likes/dislikes?
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Hello All
I know I have not been on for awhile, i do a littel lurking but not much posting lately, so anyone of you have problems with cellulitis infections? This is my second one this year and feel quite worn out.
DR says might have a chronic condition but time will tell, thought I would ask to see if anyone has had problems and suggestions for better healing.
Elimar new batch of rhubarb wine is brewing, will make rhubarb juice soon, it makes a great punch base and rhubarb lemonade is very tasty!
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carolynn, I have not had this infection (yet anyway). However, what are you doing for the lymphedema?
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Momine,
I have not been diagnosed with lymphedema but wonder if I have amild case, when I get this infection by arm, shoulder, breast are all sore, I do massage my arm and pump my fist, not sure if it helps but I think it does. May have to ask Dr, I am actually seeing my GP, my Onc is too far away, but prefer my GP, he seems more in touch with the issues I am having.
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Carol, as far as I know cellulitis is caused by lymphedema. Can you get in to see a PT who knows about lymphedema, so you can be assessed and possibly treated?
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Regardiing the Brac testing; I have very strong family history of cancer on both sides of the family. I had a large fibroid removed at 18 years old and for years had numerous biopsies etc. My mom passed away at 42 from BC. My onco had me do the BRAC testing which he had to fight the insurance company to pay for even though they have "qualifiers" for the test which I fit into. They agreed but I tested negative. The thing is and I saw the same thing written on this site, there is a 3rd part called the Bart test. My onc felt that it is a very important part of the test but my insurance wouldn't cover that part. That part wasn't available several years ago.Anyway he said that there is only one company that actually does the testing but that after this summer their exclusivity runs out so it should be easier and less expensive to get tested with others doing the test. He also said there will probably be more trials available then as well. I am hopeful that I will be able to get the Bart then.
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Carolynn--have you had radiation therapy? Radiation causes permanent changes in the normal tissue, and especially in the tiny blood vessels, that make recurrent or chronic infections like cellulitis a real problem. I had that, plus truncal lymphedema, plus "post radiation pain syndrome" and wound up having a mastectomy to stop the problems and pain. You should get a referral to an Infectous Diseases doctor, you may need long term antibiotic therapy to make the cellulitis go away completely.
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I was trying to make sure I read up all the posts before I posted the new Mystery Pic, but noticed it was already being discussed, so I will post now, then complete my catch-up. I hope that I am not seeming callous in case there is something serious being discussed.
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Now, back to my reading...
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Native Mainer
My GP discussed a little about the long term antibiotics, my big frustration is with my ONC as he does not always agree it is cellulitis but I know when i don't feel right, they told me I was one of the lucky 5% who had radiation damage and would always be a litel redder and maybe tender, but when I hurt to move, the breast is hot and there are streaks I know it is infection. Looks like I will need to work thru it and see where it leads, I really appreciate you sharing your experience, I will discuss a referral with my GP if this does not clear up better this time, he also told me that I really need to come see him if I EVEN THINK it is infected as that way it may not get so bad. Soemtimes I feel like I am making trouble where there is none, but I knwo my body and I realy need to listen to it better. I have been described as a grunt and go woman and have been. I think I am srtuggling with not being able to do as much. Really trying to prioritize. Thanks to all for your input. Have to check in more often!!
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Good to hear from you again, carollynn79, but too bad you are still having issues. Glad you got some responses and can try to get the cellulitis resolved. You are more than ready to move on, but cannot ignore the physical reminders lingering on and on and on. That is one of the big bummers of B/C.
Never tried rhubard wine. It does sound tasty!
(They need an icon licking it's lips.)Meece, my guess for the Mystery Pic is tapioca, the kind they call "pearls."
Hardly any guesses last weekend. If people want to have Mystery Pic on the weekend, get your guesses in this week. If interest is low, we'll just let it go, so this is up to all of you Middies. I'm neutral on it.
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MP-- insect larvae. Ewwwww!!
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MP - couscous?
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I think that it could be a sheep shaped cake pop!! My daughter and I have been having fun with cake pops lately!
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Yarn with lots of little pills
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BTW HAPPY national excuse to drink margaritas and tacos day!!
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Hail
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My guess is frozen corn
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Miniature marshmallows??
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Melatonin??
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