MIDDLE-AGED WOMEN 40-60ish
Comments
-
Sherry, yes, I saw the Myriad decision and I am very happy. It was the right thing. It has been all over Twitter all day (along with Prism and our new war in Syria).
0 -
Hopefully the decision on Myriad will now allow others to offer similar BRCA tests at competitive pricing.
Thanks for the link Sherryc, because I had not seen the news earlier.
0 -
I love the common sense style of the decision, that basically no one person can patent a gene. Duh! I know it's way more complicated but when I heard one newsperson put it that way, I could relate
Waiting at our trailer for arrival of dd, sil and g'son to get here. First grandchild visit here, should be interesting! Looks funny to have a pack n play in the middle of the living room! Our kids were 7 and 8 when we bought in here (1985) so first time for a baby in the trailer. Glad we have a big addition too! Little people sure come with a lot of baggage!0 -
Dianarose--I don't blame you for wanting to see the second path report before doing anything else. That info is just so critical. Soft tissue really only means that whatever abnormality is present hasn't affected the tissue or organ very much. A very slow growing cancer can be present for a long time before it makes the tissue change, a very virulent infection can change the tissue in a matter of hours. I don’t think you can make any inferences about the cancer from the tissue being soft, only that the tissue wasn't much affected, which is good. Having something to work on separate from cancer is a great thing to have in your life, so paint away!
So sorry for you friend's death, Diana.
Cricketsandfrogs--one thing that is unique about BCO is that we understand that each of us is going through a very personal journey. No matter how "lucky" we may be with early diagnosis or whatever, it is STILL a horrid journey, it involves a lot of grieving and heartbreak, and a lot of pain. The pain someone else has may well be greater than mine, but the pain I am experiencing is the center of my world at that time. Whining and venting and crying and ranting and whatever else you need to do is necessary to your healing, and we all know that here, and support it.
0 -
NativeMainer, I read your profile. It is so the reason I am trying my best to avoid radiation.
I had a BMX to avoid rads. Then they found two positive nodes out of 17. RO says it is a gray area. I think that is reason enough to NOT have rads. Not so sure anyone agrees with me. Trying to figure out if it is just so I can have reconstruction right away instead of a year from now.
I realized I was overthinking my posts. I hope I don't say anything really stupid as I'm posting and will think about it later!
Have a blessed day! ...Julie
0 -
Julie--If your gut is telling you not to do rads, don't do it. Rads only attacks any stray cancer cells in the area it's aimed at. Being ER+/PR+ they will likely recommend one of the aromatase inhibitors, or tamoxifen if you are pre-menopausal, and that goes throughout the entire body, including the area that would get radiation. If the RO says it’s a gray area, I would agree that is reason enough to pass.
0 -
But don't forget, NativeMainer, that in the scar tissue in the lumpectomy area, the circulation is no longer what it once was and the systemic treatments may or may not get to those areas very well anymore. The blood vessels have been disrupted, the lymph channels get messed up. So, rads is a method to kill B/C that perhaps a systemic treatment cannot get to. I hate rads as much as the next person, but that was the benefit as explained to me.
0 -
Eli, I didn't know that. Thanks for explaining.
I did not enjoy the rads. It was tiring, both the daily trudge to the hospital and the effect of the radiation (which is cumulative). I got a small, but nasty, burn right in the armpit and some large blisters on the chest. That was really unpleasant for about a week, but gel plasters took care of it.
I wore a lymphedema sleeve all through treatment and saw my LE therapist regularly. I also tried to eat anti-inflammatory foods as much as I could, and made an effort to take a walk every day.
A year later, my arm is fine and the LE issues are 97% resolved. I still wear a sleeve when I work out, and I get the occasional twinge, but that is about it. There is a permanent dark patch on my back, and I have very little hair in that armpit. Other than that, no ill effects so far.
0 -
Elimar--it is true that scar tissue alters the circulation routes of blood and lymph fluid. If there is not enough blood flow the tissue in that area dies, including any cancer cells that may be there. If there is enough blood flow to keep the tissue alive there is enough blood flow for drugs like tamoxifen, the AI's, antibiotics, etc to get to the tissue. Lymph fluid comes from the blood stream, so any drugs that get into the blood also get into the lymph fluid. The lymph flow can be blocked by scar tissue, causing LE, but that also concentrates drugs in the lymphatic fluid. The very sad truth is that there is almost no research done on the effectiveness if radiation in the setting of modern day chemotherapy. The radiation I got after my lumpectomy gave me no advantage as far as dying of bc, or living longer without recurrence, but increased my risk of dying of lung or heart disease. I had clear margins so I got no reduction in the chances of local recurrence. Unfortunately, I didn't learn any of this until AFTER I lost the breast to radiation damage. The radiation distroyed the blood vessels and the breast tissue started dying, literaly rotting from the inside out. The only response I got when I asked why I wasn't told this was even possible was "If we told women what could happen, or what they would be dealing with 5 or 20 years later no one would get it. The hospital has invested a lot of money in the equipment, we need to be using it."
0 -
Eli, Mom, and Native, I really appreciate the responses. A very close friend of mine had serious problems from rads. I can't get that out of my mind. The RO told me that was completely different as she didn't have BC. Yes, I realize that but rads is still very serious and has major SEs.
I feel very comfortable with my decision to forego rads. My BS removed everything in the left breast, right breast was prophylactic. I don't want the skin and chest wall to be damaged. Nor do I want any more lymph node radiated. I need all of them I have left, undamaged.
Your comments mean so much to me as you speak from experience.
May all of you have a blessed day! ...Julie
0 -
NativeM, I'll agree with you that the radiation protocols seem to have been around a long time without much revision. Sure wouldn't hurt to have a more modern take on the benefits of rads in relation to the newer therapies. I get what you are saying about blood supply and tissue necrosis. I just don't know how to precisely figure that with the reports of local recurrence occuring right at the tumor bed and scar line area.
jlbloom, That's the important part...that you feel comfortable with whatever options you choose. Rads does have a lot of collateral damage, especially when you are getting treatment on the left (heart) side. The sad fact is that some of us would be perfectly fine with no other treatment than the surgical removal of the B/C. Unfortunately, there is no !00% way to identify who those someones are.
Just last night, my husband and I were commenting about how awful it is that I can't KNOW whether I still have cancer inside me or not. How can I not think of my MO as nothing more than an money-grubbing Insurance Salesman? (And apologies to any B/C sisters engaged in this line of work. We all gotta eat.)
0 -
Unfortunately medical science does not know why bc, and many other cancers, tend to recur right at the scar site. The current thinking is that a few stray cells get rubbed off on the tissue during surgery, and the stress those cells undergo makes them less susceptible to treatment. Or perhaps there wasn't truly a clear margin, since that is only looked at in certain places, not the entire periphery of the removed tissue. Since medicine still cannot explain how cancer starts to begin with, any explanation of the behavior of cancer cells is just as likely to be wrong as right.
I do acknowledge that many women undergo chemo with no side effects, and no permanent damage that affects their health or lives. I do acknowledge that rads can reduce tumor size and decrease pain from bone mets.
We all need to make the choices that work for us. I will forever regret that I chose lumpectomy and rads over mastectomy at the beginning.
I think it's the never being able to KNOW if the beast is still lurking or not that makes this whoel thing such a miserable experience.
0 -
Just my 2cents.. I had the uni-mast, rads, and lots of chemo... lots of SEs -permanent and disabling.... regrets? YOU bet! I can't speak for the rest of you, but the changes to my quality of life, have made me regret every decision about my treatment. Sometimes wish I had just let the cancer do it's worst... Maybe I am just having a bad day... again..
0 -
I refused chemo and rads, with a onco score of 34. BS says she had great clean margins, and I told her I'm trusting in her. I just now take Tamoxifen. Left breast, I didn't want to deal with heart issues from rads. I hope all turns out okay for me, but only God knows, what will be will be.
0 -
Eli & Native Maine: Thanks for the discussion about rads.
0 -
Well it took 3 of us 6 hours, a lot of elbow grease, oven cleaner, degreaser, and a wall paper steamer to clean the kitchen at the bakery. She shines now. So much more work to do. I am trying to keep focussed, but I will admit it is difficult. I started a thread to see if any other members here had ovarian mets. No one. I feel alone here with this one. I guess I just can't be normal, whatever that might be. I knew going into chemo that it was a slim chance of doing anything, but it was all I had going at the time. Thinking back I wish they would start those of us who are highly er and pr positve on the AI right when they find out. I was diagnosed in March of last yr and I have yet to start them because of surgeries, chemo, rads, more surgery, and now look at the mess I am in. If that is our strongest weapon why the dam wait. Sorry to vent. I am just so tired and cranky.
0 -
Thank you, NativeMainer. I had tears as I was reading your response to me and so appreciate it.
Diana - I, too, am sorry for the loss of your friend.
Now I am looking forward to Wednesday and getting my drain out (hopefully).....and....a good night's sleep. Missing my Dad today.
0 -
Dianarose--WOW! That's a lot of work! I bet it looks fantastic now, though. I very much doubt you are the only one with ovarian mets, give the new thread a little time, summer tends to be a bit slower on the boards than other seasons. And it's ok to vent, that's what we are hear for. They don't start us on the AI s right off 'cause the chemo and rads depend on the cells being awake and active, and the AI s shut them down and would decrease the response to the chemo, especially. And I can imagine how tired and cranky you are feeling right now.
Crickets--YW. And I'm missing my Dad, too. Know how you feel.
0 -
Dianarose - no wonder you are tired! Holy cow that's a lotta scrubbing,washing and wall paper removing in one day! It is good that you have the bakery to keep you busy and of course focusing will be more difficult these days. You have lot on your mind. Hang in there and continue to "let it all out" when you need to. Remember that we are here for you through the good, the bad and the ugly. Hoping to see pics of the "Queen of Tarts" when she's ready for business!
Crickets - here's hoping that drain comes out on Wednesday!
0 -
Eli - love the matching outfits on the ladies at the top of the page! Looks like a pajama party - Pillow Fight!
0 -
Hauling stuff to the bakery this morning. I have collected stuff over the yrs, just didn't realize how much. It is warm and sunny so it feels good. I have to wait from 1-5 for the phone company so more cleaning.
Crickets- I hope you get those nasty drain tubes out too. You will feel so much better. I hated those things. I remember the burning.
0 -
Dianarose--I just love setting up a new place, I can imagine the fun you had yesterday! Hope the phone people actually showed up like they were supposed to!
0 -
Crickets- welcome! You made me laugh out loud with the pineapple on my head vision.....!!!
Good conversation about the rads....I too opted out of the rads and had a prophylactic MX to hopefully increase my odds against recurrence without the radiation.......I think partly, for me though, I also consider that part of my arsenal if the beast does raise its ugly head!
Okay.....I'm wearing sweatpants with big pockets tonight for my MRI. Wine, beautiful men, and your favorite music are all welcome and appreciated. I'm a lover of music that can't remember the names of songs or artists....just like it all, classical, country, pop...(not rap so much although I've enjoyed some). I'm whipping up some of That hummus too! Thanks for the recipe!0 -
Elimar, yes, I have never heard of anyone else having 39 nodes removed. Since they didn't take all the nodes there, my PS thinks I probably have a lot left. Also, maybe I had a meticulous path. who searched for every last one, I don't know.
Diana, so sorry about your friend. Cancer sucks. I'm amazed you feel well enough to work on your new place. You are a strong, fighting warrior. You won't like this but my MO says lobular going to ovaries is rare. What can I say? I'm sure there is someone on these boards who has ovarian mets.
My first three month checkup was fine, other than the double poke in my foot, trying to get a blood draw. Then, with LE in both arms and compression garments on, the nurse practitioner says I can really get blood draws from my arms, no problem. Why doesn't everyone get on the same page??? Nobody is touching these arms except my LE therapist.0 -
Hi everyone and thanks for starting this thread. I am 53, divorced with 2 children aged 18 and 22. I was diagnosed end of February, have done chemo first, trying to get psyched up for surgery beginning of August, then 7 weeks of rads with protons. I had not had a mammogram in a while which is a regret ... I am now stage 3C. But you can't manage backwards, as a work colleague once observed. I hear the concerns about the rads, in my situation it seems like I really do need it to have a survival chance, based on yesterday's meeting with a radiation oncologist (I know, of course he's going to think that - but up until yesterday I was not sure the lymph nodes in my chest were going to be treatable at all).
I have a lot of physical and emotional ups and downs. My chemo has been dose dense A-C and now Taxol and I have had painful and difficult SEs (see, hand foot syndrome and Taxol pain). I am also fearful of surgery, lymphedema and loss of function. At the moment I actually am feeling more hopeful than in a while, based on my meeting with the rads doctor yesterday who made it clear that he and my onco still believe I have a decent chance for a cure (he also mentioned, "without the radiation you're a goner"). There are internal mammary nodes in my chest area which are not reachable surgically, and they are tricky to radiate because the heart and lungs are right there, etc. He says with protons it's possible and we have one of the relatively few facilities in the country nearby. I know there are lots of risks and other damage that can be done to the body, but frankly, the alternative is not good either - I will accept what comes after fighting the good fight, but I feel am not done with my life's work yet! I have lived with MS for 10 years and lost function and faced a lot of future uncertainty with that too (somehow, it seems even more unfair to get cancer when you already have a serious disease! But the immuno suppressive drugs I have taken for 10 years probably contributed).
I wish all of you the best in this journey and let's give each other the hugs that can really only come from those who understand.
0 -
I had to get a quickie (ONLY an hour!) thyroid ultrasound this morning, and I wanted to travel light so I pulled on some capri's and a shirt with no pockets at all. No pouting, you all can come to my next scan. So, back when I was getting all those scans, "eyes to thighs" as they like to call them, there was a little nodule on my thyroid. I had ultrasound specifically on it and it looked nothing more than a tiny nodule at that time. My MO said I could get biopsy or get ultrasound monitoring in another six mos. I chose the latter. When I was just at MO last Monday, I reminded him that it was the six mo. interval to check the thyroid again. He was like, "Oh, yeah." I also mentioned it was time for my 6 mo. CBE groping. He was like, "Oh, O.K." Seems that he is really only focused on my current cancer, but I remember it ALL, indeed I do. All the docs have laptops now and have all the records right at their fingertips, yet it comes to me to remind him that we need to follow-up on certain things? Is it any wonder I am always feeling like I should just BILL MYSELF for services? Sorry for digressing there. I was able to find out that all is well right from the tech. I told her, "Hey, I know you can't really give the results, but you have my last US from six mos. ago in there, so if you happen to say something like 'It looks the same as last time' then you save me a five day wait on a phone call." She was cool, and said something like, "I can see it and I'm not seeing any difference from the previous image." Still have to follow this up periodically with US, but I have no worries. That's another reason I didn't need to fill my pockets this time.
Chacha, since I am already in scan mode today, I'll definitely tag along on yours later.
Greetings, AndreaLodahl! I had plain old rads, not the fancy kind WITH PROTONS. I'm going to have to look that up. Sounds more high tech than regular and I'm the kind of gal that lets a robot operate on her so, of course, I am jealous! When anyone says "yes" to rads, and then never does recur, there is no way to know WAS IT the rads or WAS IT NOT, never really knowing if you needed them? You may never touch the dice or get in line for the Powerball, but B/C makes gamblers out of us all. I did the rads, now it's just wait and see whether the universe is going to laugh in my face. BTW, what surgery will you be getting?
0 -
Welcome Andrea. This is a fun, supportive thread with Eli. Ask away any questions.
Eli - I know Proton therapy is for structures like the brain, prostate where other vital non-involved structures are a millimeter or so or maybe less near. I had not heard of it being used in breast CA but with Andrea's involved internal mammary nodes it does make sense.
Glad your thyroid US was uneventful.
My oncology center is building a proton therapy center midway between Dallas and Ft. Worth. One is also under construction at UT-Southwestern in Dallas. I can't imagine as large as the metroplex is the nearest one is at MD Anderson.
Dianarose - Wow you are the busy worker bee. Can't wait to hear about the 1st day of the Queen of Tarts. When do you hear about 2nd path report?
Chachamom - in your pocket for MRI. I'll bring the cake.
Well, I had a fun chest CT week b4 last. I developed a knot at the sternoclavicular joint. Now I of course went to the dark side but also knew costochondritis was the most likely cause. So since I was due to see MO the next week anyway got in a week early. He thought most likely the costo. but said it did move a little bit. So off to CT. His nurse boo-booed and called me even though I had a return appt. Nothing seen 'cepting some spinal degeneration - DUH. So went back for appt. and Eli I can so relate to being our own advocates. He wanted to know how the "pill" he had put me on was helping. Turned out he thought he put me on Celebrex (which is a cap, not pill). Days I think I need to change MO. Whole 'nother story about that. Anyway started the Celebrex yest. after thinking about it for the weekend - after all it had already been 2 weeks he thought I was on it. I was an early adopter of NSAIDS for menstual cramps. Never met one I didn't like so hope this will help the costo. as well as the Femara aches. We will have to talk about long term maybe Mobic. Oh yeah, he does tumor markers and they were unchanged from last Sept. So we shall keep truckin on.
0 -
Thanks for reply. My surgery plan has not been finalized since I have not yet had post chemo scans. Started with big tumor (3cm) in small (cup suze
breast, so they told me while it was possible it would shrink enough for lumpectomy, more probable I would have MRM. It has shrunk but still between 1-2 CM, plus the peace of mind factor, so am pretty much thinking it wil be MRM (I have several malignant lymph nodes under my arm as well). Have just begun thinking about reconstruction. I will probably opt for a saline implant which would have to be put in before the rads. Not an candidate for TRAM (the one person I know who recently had it, also has had complications) and the more extensive surgery for lat dorsi seems like a mixed blessing - another major surgery and possible compromise of my "good" arm. They can't do proton thru TE. 0 -
Welcome Andrea like luv my goats never heard of proton being used for BC but it does make alot of sense. I had a friend who had it done at MD Anderson Houston for lung cancer that had mets to his brain. He had already had brain rads before so the proton was the only thing that they could use and it worked. Andrea there are many other flap type reconstruction that can be used. I don't know where you are from but I would consult with someone that has the ability and the experience in all the procedures. I was not a candidate for DIEP flap so I choose implants. But you can use hip, inner thigh and buttocks if you want to use your own tissue. My PS has a great website with information of all the procedures if you want to take a look at it. http://prma-enhance.com/ I use Dr. Ledoux but seriously all 6 of the Dr's are top notch and they specialized in breast reconstruction. If you have questions you can call Brandy Korman the patient liason and she can answer any question you may have. It may help you with finding out what you really want to do.
Eli glad the tech gave you a hint and glad everything was OK.
0 -
http://breast-cancer-research.com/content/6/3/r149
Jeannie- the research does show that those of us with ILC have a much greater risk of ovarian cancer. I think the numbers are low as ILC only makes up about 10% of all breast cancers. Not as much research has been done on lobular either. Sucks to be different.
Elimar- if your doc's paid you for all of the their work you do you could go on another cruise.
Andrea- sorry you are here with the rest of us. I had to have a lot of radiation to the chest wall as well. It is a hard choice. I have a friend who has MS and breast cancer as well. I never heard of the proton either. What is the benefit?
Luvmygoats and Nativemainer- I am having a hard time focussing on the bakery. I seem to get less done than I had planned. I was told this new path report could take a couple of weeks. It will be 1 week tomorrow. I did find out that the pathologist is new, really??? I found his mistakes and I am not trusting anything in it.
0
