Can we have a forum for "older" people with bc?
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bonnets, welcome to the Forum although I do wish you had not had to look us up. I am so sorry that you lost your daughter. Don't wish to be unkind but it does sound like it has been awhile and that you have mainly come to terms with it. I hope so. It seems for all we have 'learned' about this disease, there is still no much not known. Such as WHY we get it....especially when our history would indicate that it is so less likely.
I'm glad you are doing the extra testing....not only to help you with your decision, but to help your remaining daughter. I would have to say though, in light of the circumstances and the fact that there has now been two out of three adding to the history.....no matter what the BRACA tests says......your daughter I think should err on the side of caution and be very vigilant.
Thankfully, it also sounds like you are in an area and can avail yourself of some quality care and Dr'.s .
Waiting for the answers is never very pleasant and we all live in that gray area of silent torture still we can start putting together some answers and real relief begins to come when we have a plan to put in place and operate with so as to start some forward movement for handing things.
We will all be hoping that you get news that will allow you to move on in life with some comfort and hope you will come back often. Sharing some of our burdens usually helps to much to lighten the load. My thought, prayers and hopes are with you.
Hugs, Jackie
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I'm so upset, I have Empire BLue Cross Medicare advantage ins. They are giving me thumbs down on the BRACA resting. Have to document my need and appeal. Supposedly reg. Medicare does cover it! One more thing I don't need. Guess I know what i'll be doing tomorrow. Fought ins. on surgery my hubby had, and we won! Drs office told me only 1-2% win.
Did my MRI the head piece was the most uncomfortable part, pushing on my nose and brow!
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Something is really wrong with this thread! I'll report it to the Mods also!
It shows "Bonnets" where Jackies post is! I think "Illinois Lady" and "Bonnets" got together somehow!
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Thanks for the alert, Chevyboy. You're all back in alignment now.
• The Mods
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So very sorry for your loss Jean. Sorry to meet you this way too This website has been a godsend for me as to getting information I have lived on it since my diagnosis in July. There is a thread for us very olds 75 and up; There is another for newbies and another ffor those starting chemo in Sept. I've learned so much from so many; Welcome aboard; Sorry you are here, but hugs for the distance. C
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bonnets.....so sorry to hear you are already traveling through the road block system of getting your tests and txs. Amazing how some things stay the same. You will keep fighting I'm sure -- but hope in the end they give you what you need.
Hugs, Jackie
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I went for genetic counseling today and the counselor told me that a one company has a patent on the BRAC gene and that testing is $4,000. He said the patent expires in 2014 and then the cost of the test will be $1,000. That isn't right.
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No Beth.....it isn't right, but I think what will happen ( hopefully ) is that Insurance compaies will not have their brakes on so tightly when the cost of this test comes down to what they see as a managable level. Of course, if you don't have ins. it is still going to cost a lot....but there may be ways to deal with that. Changes for the good always take a long time it seems.
Hugs, Jackie
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The source of the gods is in your own heart.Follow the footsteps to that centre and know that you are thatof which the gods are born
joseph campbell0 -
The eye injection was another non event....I refused the lidocane injection because I had a feeling it had something to do with my last problem with the broken blood vessel. Sure enough, nothing this time. I barely felt the shot, so I'm happy!
A/C repair guy showed up and sure enough, the coil box has to be replaced...it rusted out and the freon leaked out:( Expensive, but not as much as a new unit. Part isn't coming in till late Friday and can't install until Monday. Fortunately I have a friend I can spend the weekend with so I won't get too hot...lol! The payback is I have to watch football all day Saturday...ugh!
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Hi Gals...... Beth! So have you had "Three surgeries"?? Or three biopsy's? On the 10th, 20th and the 27th? And you are thinking about a Mastectomy? Did your team advise you to have the BRCA testing? I think that mainly shows what type you have, after you get the final pathology report, and then that determines if your Daughter/Daughter's need to be tested. Even if that comes back positive for you, that doesn't mean that they will get that type of cancer from you.
My Sister-in-law's Mom had that gene, and had a mastectomy, but did well! Her Daughter's both have the gene, but nothing is showing up yet. So it doesn't make sense to have a mastectomy, unless a Doc advises that.
Are you thinking of Radiation yet? Or what has your team advised you to do?
Ducky! Hey kiddo.... how's it going? Talk to us....we're always here.........
Bonnets.... So sorry you lost your Daughter! I just can't imagine. I have two grown "kids" and I can't even think about something happening to either of them......... I'm just not sure about the BRCA testing...... My Mom had breast cancer, but she passed away so many years ago, and anyway I don't have that gene. They tested for that with the surgery! So my Daughter's don't have to worry about getting cancer from me....
But you know, there are sooooooo many different types of breast cancer, that they or anyone could get! And no-one can say exactly what causes it! Breast cancer has been around since the Egyptians, and we know they didn't take the pill, or use Saccharin, etc. It just happens! I was told that cells normally live, and die off, but SOMETIMES when they die off, something crazy happens, and they form cancer cells. We know Estrogen will "feed" the cancer cells, that's why there are further treatments after surgery and radiation, to stop your normal amount of estrogen from feeding any stray cancer cells. We always produce estrogen, even though we have gone through the change.... just not as much! We have it in our Pituitary gland, our liver, etc.
Kaara....so glad you figured it out! Now you won't be so afraid next time. Glad this one is over with. Hope you get that air fixed soon. I've been taking down my Summer gardens/plants, and flowers. A little at a time...getting ready for Winter.... I'm kind of looking forward to it...Ha!
Little Jackie.... Doesn't it seem like Marybe was with us, then all of a sudden she was gone? Man, I never would have thought that would happen to her! She has been such a shining example of conventional medicine, and taking every thing they threw at her...! What was it? 14 years that she lived with stage 1V? But like you said, maybe something just "happened"....Maybe the latest combination was just too much for her? It is still so sad.
Someone asked about my hands.... They ARE better.... The Dermatologist told me to soak them in cool water at least 2 times a day, for 15 minutes, then rub that new ointment on them while they are still wet, THEN rub on the Eucerin Professional Repair lotion. And sit there...
At night I do all that, and then slather them all over with Vaseline, then the cotton gloves I sleep in. At least they aren't cracking & peeling as much! I think it's working. It's just Dermatitis, which can REALLY get bad... but when I let them get dry...at all.... They will crack. At least it's on my hands, and not my face...Ha!Okay gals....talk to you later......
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Waiting for my MRI results......Did contact the labs that do the BRACA, said my test was being done, so guess they resolved whatever caused the insurance co. to say it wasn't covered! Drs. office called this morning. She said they wud deal with the ins. company, so maybe they did.
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Yay bonnets......lots of people seem to have to go through a "crash" with insurance issues that do work out.....lots of times not quite as easy as yours seems to have. I'm glad though that this will be done and you will know where things actually stand. Also, will of course, help your daughter as well. My thoughts still would be for her to be extremely vigilant no mater what, period.
Hope you all had a great day. Things are fine in this neck of the woods. Had a couple of good pour downs today. Well, right now rain is a good thing for us to help catch up on the months of drought.
See you all later.
Hugs, Jackie
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I'm a former Illinois Girl, Chicago, grew up there.Dad was from Danville.
Right I have to keep after my daughter.
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Great to see 'older' posts. Am 58 years old. From "Down Under" and keen to see what protocols, if any are different, are used. Have had lumpectomy, recovery great. Lymph nodes clear, margins clear, but have LVI positive. So now, decision re chemo or not. Basically my choice! Will be having Rad and Arimidex. Perceived benefit of chemo is 1.4% over a 10 year period. Am very healthy and play sport and walk and not overweight at all - will be interested to know others in my position who had to make the choice and what and why. Going to be a grandma for the first time soon.
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G'day jbr, another QUEENSLANDER here too! Welcome to BCO, hoping you find the answers/info you need to put your fears to rest.
I have BC to thank for finally getting two grandsons which I thought would never happen.
Don't be a stranger and drop in often.
Sheila. (yep, that's my real name!)
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G'Day mates! How fun! Or is that used for gals too?
And nice to see you again AussieSheilah...! Yes, I have two Grandsons also, but mine are 25 & 27! The older one called me last night from Orlando, "just to talk".... It's like when I hear his voice I just SMILE!!! It makes me so happy to talk to him! jbr, I had to look that one up! I didn't know what LVI was....So they found some cancer cells in your lymph veins? Dang! Okay, will they do the Onco test for you? See if they will! They analyze your pathology report to see if you should have chemo. My nodes were clear also, but my Onco score came back as 19...That meant I could have chemo, but I chose not to have it. A lower score is always better. I chose to only do Tamoxifen... Jackie, (IllinoisLady) is on Arimidex, and doing okay, I think. Most of us DO take either Tamoxifen, Femara, or Arimidex. Anyway, nice to hear from you....You sound pretty up-beat and happy!
But I was/am older than you! I'm healthy too, I think, but at 75 "things" just make you slow down a little, or hurt getting up and down.
Yes Bonnets.... See if you can make sure your Daughter gets that annual mammogram! I'm much happier cancer found me at an older time in my life, than either one of our Daughter's! My Mom was older also, when she had a mastectomy... (She must have been about 60)....but that isn't the reason she finally passed away at 82.
Have a fun day everyone! xoxoxo
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I'm up early this morning...couldn't sleep! It couldn't possibly have anything to do with not having any A/C until Monday:( The good news...at least I'm in NC and not in Florida, which would be intolerable..lol! It's the cooling coils which rusted through and must be replaced and (naturally) Trane doesn't make those parts for my older unit, so will have to be retrofitted. Better than buying a new unit which I don't want to do since I just replaced mine in Florida. Don't need a double expense right now!
Chevy: I'm going to work in my garden early this morning, taking out summer plants and putting in fall ones for the season. I love doing that! I've sort of neglected my gardens this summer because of travel, so it will be nice to see some color again with the pretty mums and pansies as well as the ornamental kale. It's my favorite time of year, probably because I didn't have it in Florida for so many years.
I am so sad to hear about Marybe...I was so hoping that she would pull through this one like all the others. She will be missed by so many who relied on her for daily inspiration. Prayers to her family and may she rest with the angels.
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jbr: I had almost the same as you.
Lumpectomy but also had 12 nodes removed,3 infected. My perceived benefit of chemo was 10% over 10 years but I chose not to have it. Am also very healthy, trim & fairly active, swim 1/2 mile every single day. I am taking Femara for 5 years, presently on day 73. So far side effects have been mostly emotional, but getting better.
Today I have radiation #22/25,finish on Tuesday. SE: a little burning, & fatigue, a lot the second week, then better, yesterday not so good but not unbearable.
I feel I made the right choice re: the chemo...did not want to give up a almost year of my life (with chemo s.e.) to gain another possible year at the end of 10. I hope I explained that correctly to you. My decision & my partner, who has been with me throughout this journey, agreed with me.
This is the way I feel & the choice that I made. We all have to sort through in our own way. Message me privately if you want to. Would be happy to talk more with you.
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The sun does not shine for a few trees and flowers, but for the wide world's joy.
- Henry Ward Beecher0 -
jbr welcome to our little cormer of BC. Org.....though we pray for the day we can take the welcome mat and toss it.
I had the whole 9 yds. Lumpectomy ( second tumor, bigger and aggresive found at that time ) with 6 mos. of chemo.....three kinds, Adrimyacin and Cytoxin as well as Taxotere. The 6 mos. had some rough edges, but I got through.....then 7 full weeks of rads....the last full week being all boosts --- and now I'm doing 5 yrs. of Arimidex - Anastrozole and am on my 4th. yr. of that. Not sure what will occur when I've done the full five because my MO wanted to have whatever info was possible after my five yrs. were done. New things do come up while we are doing active txs. so some Dr's I guess like to hold on to see how things look in case there is something at that time to offer. We just have to gather what info we can and try to make a decision that 'feels' right for us.
Aussie....great to see you here. Grands.....they are such a gift. One of the best reasons for our going on.
Isabella.....you are doing so well with your rads. Just need to keep lots of lotions on. The end is near and always nice to be on that side of things.
Kaara.....it is hard to sleep when its hot. I'd be up too. We have our a/c on 79 or 80 which is ok.....but I have a small fan I use to blow across my bed while I'm sleeping...else I'm not sure I'd do so well. At my age.....I'm going to be up at least a couple of times to "go" and it sure helps to allow me to drift right off again and not toss and turn to find a comfy spot. Glad your eye injection went well this time.
See you all later.
Hugs, Jackie
Aussie....great to see you. Hope
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One down, Got the MRI results, nothing new. JUst the long waiton the BRACA. Hoping one neg holds for #2!
I'd like to help you throw out the welcome mat. We need a CURE, not pink ribbons!
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I love " we need a cure, not pink ribbons "
Chevyboy, I had three biopsies/lumpectomies...and a sentinal node dissection. I am trying to figure out the lingo
After reading many of the posts on this site I am pursuing a second opinion in Seattle next week. My youngest daughter lives there and has a connection to a women's cancer center at Swedish Hospital.
Reading all the informtion on the site has been so very helpful. I have some regrets at not going to a specialist in the beginning, but living in a rural part of Washington State I just forged ahead with my local docs. I have great faith in them, but they are not specialists.
Ironically I have gotten so much more information from this wonderful site than I have from any doctor.
Now I just have to get moving and work out of the haze I am in. Yes, I feel very glum and ho hum about now. I feel very demotivated and have for the past 6 weeks. I know getting up and going would be good for my psyche, but I seem to just stay in this rut.
It will be good to drive over to Seattle Tuesday evening. They have scheduled me for an MRI ( I I have not had one yet) on Wednesday and then I meet with the surgeon on Thursday. I have no idea what they will suggest, but I will be delighted to hear more about what my options are.
My surgeon here only presented the mastectomy option to me.
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Hello, welcome, and gentle Hugs. I Heard drip drip in the bathroom this moring - (I rent an apartment). Searched and found it was in the closet with the water heater and the large bucket I keep my cleaning supplies in was almost overflowing. Called maintainance and they came right away.
Good part was no overflow or flood onto the floor, etc and I was home at the time. It was the air cond drain clogged. A quick fix, but i averted a near disaster. New grand baby, so i was overnighting twice to watch the older sister and could have walked in to a real mess.
Here's hoping for a great day for all.
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Welcome to the new bc sisters. I'm the summer gypsy member of this discussion forum. DH and I are reverse snowbirds and go north with our 5th wheel camper during the summer to escape the dreaded 3 h's. Heat, humidity, hurricanes.
We're now in Eden, SD, pop. 97, visiting friends who lived in Louisiana for 30 years. The weather is mild. We're sitting here with doors and windows open. Earlier we drove with our friends to a state park that honors a religious site of the Lakota Souix (sp?). There's a walking trail through the woods with little brooks and waterfalls. It was very peaceful.
I hope those making decisions about surgery and treatment get all the information they need to make the best choices for them. One size does not fit all with bc. I had a 1 cm IDC tumor and could have elected lumpectomy. Instead I chose bilateral mx with immediate reconstruction. I wanted to minimize the chance of other tumors developing in breast tissue. At age 66 (3 yrs ago) breasts just weren't that important. I love, love, love not ever having another mammogram.
Hugs to all.
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Hi Beth.... A "needle-core biopsy" is done with a needle, and they take out a small piece of a suspicious tumor... And you can have more than one on your breasts... They analyze that to see if it is malignant or benign.... If it is malignant, THEN they will either advise a Lumpectomy or a mastectomy, depending on the type, grade, and stage. Not until you have the surgery, will they know for sure all of that information..... And that is in the "final pathology report.
I had a Lumpectomy, which is general surgery, where they put you to sleep, and take out the tumor, and lymph nodes... Usually 3 or more. With me, the surgeon then sent each sample to be frozen (while I was still asleep) and they analyzed it, to see if she got "clear margins".... and clear nodes. And then she would sew me up, AND the node section, and I had the MammoSite Device implanted for the Radiation. So I have 3 little scars.
Also you have to write what your Docs tell you! And ask questions, and write down the answers. DCIS is a little better than IDC...Mine was "Invasive Ductal Carcinoma" Yours is "in-situ" Which means it hasn't spread out of the ducts.... So I printed off a sheet, from this BC.ORG with my "diagnosis" and that's how I filled it in. I asked my Doctor any questions I had.
So good luck Thursday, and let us know!
Geez Gram! That really COULD have been a mess! Oh man, I am so DONE with plumbing problems, Ha! But we got our problems fixed, and everything is working good now.
Yes, Carole, is our little Gypsy, Ha! You are so lucky!!! And are leading a beautiful life! My Daughter wanted me to have a mastectomy, but I listened to my Surgeon, with MY type of cancer, taking into my age...(72) and that's why I chose a Lumpectomy... There are a LOT of things to consider.... So take your time Beth, with deciding this.....
Talk to y'all later! xoxoxoxo
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Thank you, great explanation. I am off to see if I can get the Oncodx test next week before deciding re chemo. We have to send ours to USA! At this point I have a 1.4% increase over 10 years - really got to ask myself if it is worth it. I feel very fortunate to have had mine found so early and also co-incidentally. Was in the Dr for another matter and she did an ultra sound check up! Wasnt due for another mam for 8 months! Double MRI done and all clear but no bone scan done - wonder should I do it at this stage? Anyone any ideas.
This site is so helpful, really finding more and more info - my Doctors have been brilliant and helpful but it is so good to hear from "other" BC ladies and their stories.
Motive be positive and enjoy each and every day for what it is worth.
Thanks.
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Good to see some Aussies on line! We have great local support group here, small, but good. Nice to hear from others though.
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Picked up my MRI report, found out the mass is 10 mm. Feel better about that, didn't have ny idea before!
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Bonnets..... I'm pretty sure 10mm is the size of a marble, so I think that is good news! When are they doing your surgery? I was just anxious to get mine over with, after I had all the tests.... I'll be 3 years soon! And things or numbers might change after the surgery, and the final pathology report.
Yes jbr! As you can tell, we all try and stay positive on this thread! I mean every day is a gift, right? That's why it's called the "present"....xoxoxo
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