Can we have a forum for "older" people with bc?

Finding even after all these years, almost 13, Mothers Day is one of the difficult holidays for me. Amy, my daughter who passed from BC at 33, was always the one of my 3 who took the time to send a card, flowers or a gift! The other two I wait to see if they will remember to call. Same for birthdays and Christmas. Don't know if it will ever get easier!

Hope you all have an enjoyable Mothers Day. We are actually supposed to get some sun.

Happy Mother's Day to all the Mothers on this board.

I'm 62 and just completed active BC treatment. I enjoy BCO but as the thread-starter Northstar said, many of the posts are from younger women. I would like to pose a BC-related question to the other 'older' women on this thread:

Did your age impact your treatment decision when facing BC treatment? I often look at the signature lines under posts and so often their treatments (for the same BC stats as mine) are far more involved than mine. For instance, double mastectomies for women who had an in-situ BC or a smaller than 1cm BC with no lymph node involvement.

I realize we each have to reach our own treatment decisions and, at least in the US, we are lucky because most of our insurance companies cover whatever treatments we decide to get. So again, I ask: how, if at all, did your age factor in to your BC treatment decisions? Did you decide to forego chemo or rads because of your age? Did you decide that you didn't need a treatment because BC in older women often (but not always) seems to grow less aggressively or more slowly than in younger women?

I would love to have your input.

Thanks!

Sunnyone

Good morning Sunnyone22. I'm not a good person to ask but I'm sure others will come on at some point. As a former WAC I had no insurance ( lost it a short time before diagnosis ) and had my treatment through the V.A. I listened to options, but generally deferred to them. So, it ended up being a lot of tx. since at first I had a slow growing lazy tumor --- them upon removal ( lumpectomy ) a second, much larger, aggressive tumor was found which threw me into a way different, much longer tx. plan.

I hope you get lots of answers to your questions. May take a day or so here. I don't celebrate Mother's Day -- another work day for me, but since having cancer which is and has been NED I celebrate everyday with as much devotion to and gratitude for as I can develop. I feel like the Universe showered me with love and care in my darkest days and I respectfully wish to give some back --- and as well to my fellow travelers on the path called life.

Jackie

Sonnyone- good question. I was 64 when diagnosed. I did everything the Drs wanted, but immediately chose a double mastectomy with no reconstruction. I had had scares in my left breast a few times, so I just didn't want to take any chances. I remember telling that to my breast surgeon the first time I saw him, and he agreed immediately, but told me I had lots of time to decide on reconstruction. Then I found this site and read a lot about reconstruction, which just reinforced my original decision. I don't know for sure, maybe there are lots of good reconstructions, but all I was reading about was the nightmares some people went thru - some needing multiple revisions, and even the ones that had success on the first try reported a great deal of pain going thru the process. Maybe a big part of my decision was the fact that I had lost my husband of 42 years thirteen months before I was diagnosed. I have a very busy life with 5 children and soon to be 8 grandchildren. I knew I would not be dating, much less remarrying. But even earlier, when we would hear of someone having breast cancer, I always said that if that was to happen with me, I would go for the double mastectomy.

One decision my Drs made was to do the chemo before the surgery, which I had not heard of before. But my soon-to-be daughter-in-law's sister is a well respected Dr, (not an oncologist), had vetted my BS and MO and said they were the top of the top in their fields, so to trust what they said. I aM glad I did, because I was stage three, and looking back now, when I have been NED for 3 years, I believe that decision was absolutely the right choice

There are as many different reasons for choosing or refusing a particular treatment as they are women diagnosed with BC. Unfortunately we are forced to make those decisions when almost everycell in our brain is just shouting "I've got cancer, I've got CANCER". I didn't even think of questioning the Drs plan - all I knew was I wanted to live. I believe my age factored in, only in the sense that I did not choose reconstruction. If I haD been younger, married or not, I might have chosen recon. Hope that helps- it's only my humble opinion.

HAPPY MOTHER'S DAY TO ALL, even those whose children are the furry kind.

Anne

I was diagnosed a week after turning 71. I had a lumpectomy and the margins weren't good enough. The re-excision for better margins found a slightly larger more aggressive tumor that was not on the mammogram. At that point, I decided on the mastectomy. The margins on that were good, so I was able to avoid radiation. There was nothing suspicious in the other breast, so I decided only to do the bad side. I never considered reconstruction. Perhaps if would have if I was much younger; I don't know. Currently I'm considering having the other side removed for symmetry. It's difficult to match a sagging bag of marbles with a perky foob and the bra strap crosses a nerve that's acting up. Still it's unnecessary surgery, so I'm not sure I'll do it. I didn't have an oncotype test and was happy that no one thought I needed chemo.

Happy Mother's Day to all.

Sunny I love your user name. I asked the same question of myself over and over during my experience. I had screening mammo 1/2016 and was not told I had cancer until 2/25/16. I began getting angry. I couldn't understand why it was taking so long. It turned out to be invasive Ductal carcinoma but I was also having atypical Ductal hyperplasia in opposite breast. I am 65 and I asked myself what I would do if I was younger. But I realized the only difference to me would have been the recon decision. I wanted both breasts gone but the surgeon I had at the time said no but that he'd probably have to do it later. I wondered why not get it over with now. As things led from one thing to another I wound up going to a doctor who specializes in breast surgery. She agreed to the BMX and I thought about it and wondered if I would feel mutilated or at least very depressed if I didn't at least try for reconstruction. I have a wonderful husband I have been married to since I was 16 and he was 17. I don't think he wanted me to go through the recon but left it up to me. I had the surgery 4/19/16 with recon TEs placed and yes there has been pain and a lot of exhaustion but I would do it again. So far I am not sorry. I knew it would be a battle but I have a lot of support. I love the doctors I have now and trust them. As it turned out I have stage 2A cancer right side clear sentinel node but unexpectedly had atypical cells in lymph node on left side. Pathologists are not sure what's going on so now I am scheduled with a good oncologist and am to expect at least chemo treatments and 5 years treatment for Er+, Pr+, her2- receptors. Oncotype score hasn't come back yet. But to answer your question the only difference related to age for me is I would make the same decision if I had the same options available

Happy Mothers Day to all my BCO sisters. I love you all and will forever be grateful to you for sharing your experiences with the rest of us

Sharon

Ah, you gals are great! We're all in this together... no matter what our diagnosis was!

Sunny - before my initial surgery, I had a mammogram, an Ultrasound & ULS biopsy, a CT scan to pinpoint the tumors for the surgeon and a PET scan to make sure nothing had yet metastasized.

I often wonder why women decide on their treatment plans- I was 67 when diagnosed with this cancer in my other breast ( BC 7 yrs agoDCIS) had many biopsies which should have given me some warning that something just wasn't right but lived the last few yrs trying not to think about it- mammos, US, MRI every 6 months and doctors visits as scheduled- dx in the fall with early BC stage1 grade 1 ILC- as I did years ago I decided on a lumpectomy and radiation this time taking Arimidex - my husband had medical issues 3 yrs ago and I wanted a treatment plan which would have the least down time (within reason) each of us hope that we've made the right decisio

chisandy - some thoughts from your post:

Interesting that a cruise entered into your treatment decision - and very understandable. BC is life-changing enough without having to put off such important life events.

We had similar BC's - size, grade, stage, clear margins, no node involvement, normal contralateral breast - just different type (IDC vs ILC). ILC is the step-child of BC's in that it is usually lumped in with IDC treatment protocols...but that's another discussion for another thread.

Your very large breasts have certainly added to your treatment woes - more so than I ever considered. In 2009 I had a cosmetic breast reduction. (Not sure of the cup size pre-reduction, but big enough that surgeon took over 500cc's from each breast. That's a total of over TWO LBS of breast tissue!!) I understand why you say that if you had it to do over, you'd have opted for BR. But the upside is that there was plenty of tissue to remove for a successful LX, in your case.

As for age as a factor when considering chemo - I, too, thought about being in my 60's and chemo. If there had been a clear-cut benefit, I wouldn't have hesitated, but even with an OncoDX of 20, the benefit was small. Factor in tumor size, grade and the ILC (which is typically not as responsive to chemo as IDC) and I decided to stick with two MO's advice for no chemo. Of course, I'll always wonder if I did enough but must just let that go. I am happy that I haven't challenged my healthy tissue and am keeping my immune system strong (sleep, exercise, probiotics, vitamins, etc.)

I'm also on letrozole and, like you, have few side effects in the early weeks. You say your SE's started later........I'm hoping our experiences are different in that regard.

nanagirl - So sorry for the ILC after NED for so many years. Glad it was still early stage. You make a good point for how spouses and their health become part of so many women's treatment decisions. This BC stuff is bigger than just us, sometimes. It affects many of those close to us as well.

dtad - you're a good example of just how much our ages can influence treatment decisions. I am so grateful that we have so many options open to us when faced with BC, especially given how we personalize out treatment plans on so many things such as family, age, children/grandchildren, life plans, etc.

Sunnyone,

I don't post often, but wanted to chime in here. I was 2 months shy of my 67th b-day when diagnosed in Jan 14. It was a small Stage 1 IDC ,Triple Negative with no lympth node involvement. TN is very aggressive and has no dedicated treatment (other than chemo) unlike the hormone + bc's. If it recurs, it happens more often in the first 3 years after diagnosis. There was no question that I would do aggressive chemo for a total of 6 months, followed by 2 months of rads. I chose an LX over MX as I was told by all my docs that the chances of survival were the same - in fact - slightly better w/an LX. I am small breasted anyway and hardly notice the slight indent on the bc side. I didn't have to think twice about it and I have no regrets over any of my treatment. I was in excellent health before chemo which probably helped me tolerate it very well. I even managed to keep up my exercise (at a slower pace) every day through treatment. I have no lingering side effects from treatment and lead a very active lifestyle. I've had a few scares (2 of them recently), and am very grateful that they turned out to be nothing. I feel blessed beyond words to be healthy, active and to be here to enjoy my kids and 7 grandchildren. Best of luck to you in your treatment.

Paula

Not so good news here. I have lymphedema, just diagnosed and my surgeon's office is looking into the best treatment MLD, which of course isn't in my insurance plan. In my plan is going back to Park Ridge, where I had my 3D mamo and biopsy. It's pretty far. I have researched some options and there is a place and therapists not too far from where I work, but still a lot farther than the 1st choice which happens to be in my neighborhood, just a different hospital.

Insurance company says PCP can request 1st choice and insurance might approve it, but it's the surgeon's nurse navigator doing all the work, and she's always swamped so I don't get information until it's set up vs. "I'm working on this ... just so you know," which I would rather have.

It started as hardness in my whole right breast, not only the incision side. Now I notice my right arm feeling like it's in a blood pressure cuff.

It's a new journey and one that I would have preferred not to take, but that's not my choice.

Had a lousy day at work yesterday - reporters asking for different things online, that are not the norm, challenging and frustrating. Have to resolve some of those issues today.

I know Sandy has had these issues and am hoping the MLD is part-time, once a week or something to start until I learn how to do it. I already used sick time for the surgery and am starting to build a few hours back. I may have to use vacation time.

Prayers and information would be great.

Hope you all have a great day ... gotta leave for work.

Linda

Linda, you assuredly will have my prayers and hopes that you are able to get the care YOU will feel most answers this problem. I don't think I've ever heard a description of how lymphedema feels and though I hate to sound so awful ( I'm the put on a happy face gal you know ) about it, it sounds totally distressing. It is not likely to happen but sometimes ( like for dx'ed cancer patients ) it would be so nice if some part, if not several parts of the tx as well the problems the tx might bring had standard solutions --- not the usual of one hospital can't be paid for something --- or you have to be in a certain network, or only SOME Dr.'s. We just seem to have to soldier on and so the best we can.

Other news here is we are once again awaiting rain --- after a big honking storm last night. I slept through it --- which is normal for me, but I'm tired of this rain. It seems more like April where we had a couple of storms, but nothing consistent --- as in April showers bringing May flowers. Well, the weather patterns have been topsy-turvy and very unpredictable for some time. I'll just plow on.

Lots of phone calls yesterday to get myself un-hooked ( thought it had taken place ) from Liberty holdings for electric power. I was disgusted --- I paid my electric bill and skimming through saw their name. A few months back --- when our two yr. contract was up, we told them we were not going to re-sign. They never really saved us the money they said they would. Well, they have something of a sneaky deal on it seems. If you say you are not going to re-sign ( tying yourself up for another two yrs. of un-happiness ) they apparent check a box that says your now going month to month. I wanted to scream at the ( foreign and hard to understand guy ) what part of NO doesn't your company understand. Both Dh and I emphatically told the person who was to re-sign us that we wanted NOTHING more to do with Liberty. Well, we are now out of it --- with no cancellation chgs. to us. I don't know if it helped or hindered that I said if I wasn't treated correctly NOW my next call would be to the Energy Commission followed up by the BBB. Whew !!!!

Now back to my happy face. Hope you all have a good day and not too much rain, or snow. Have a nice sun in your sky, please --- for me.

Jackie

Anne, I don’t have to wrap, just use compression (sleeve & gauntlet) for flight, going to high altitudes, and exercise/repetitive motions with my R arm. My LE doc told me yesterday that it was probably the rapid elevator ascent to the 96th fl. of the Hancock bldg. that caused my flare--not the altitude itself. He said that I needn’t wrap or get a night garment for my 5 days in the Blue Ridge Mts. (2500’)-and that I might become acclimated to the altitude by the second day or so. He says to just sleep on my back with my arm on a pillow, or on my L side with my arm lying atop my R hip. (The Rockies, Cascades or Alps are another story--yet I didn’t notice swelling when my train from Lausanne-Paris went through some Alpine passes).

Linda, so sorry to hear you developed LE and it seems to be worse than mine. (I only got the hardness over the incision site, and the triamcinolone ointment my dermatologist prescribed and the Swell Spot I wear in my sleep bra seems to have softened the tissue and reduced the swelling considerably). Even my worst arm flares didn’t feel as tight as a BP cuff, and though I do get impressions from the charms on my MedicAlert bracelet (I remove it to type) and my ring needs to be twisted rather than just slipped off, that’s about as bad as my arm LE gets.

I started with stage 0 (not visible, no increase in measurements) but just based on the symptoms I described to the LE doc. My current stage 1 dx is based on pitting edema on my inner forearm, the marks from my bracelet, and finger tightness (measured by how far on my pinky I can reach with my R thumb relative to the L). Measurements are about the same. My skin is still soft. I got Dr. Feldman (at Evanston Hosp., the founder of LANA) to write me a scrip for LE therapy with the OT/PT LE therapists at Evanston’s PT dept. Go to the LANA site and look up LE therapists in your area--then get your PCP or nurse-navigator to write you a scrip to go to the specific ones you want. (What’s your insurance, may I ask? I have BCBS Medicare supplement, and they covered 6 weeks of twice-weekly sessions). MLD can be done at home--ideally, daily but whenever you notice a flare. Some private insurers may cover compression garments---when I first got my bc dx and scrip for a sleeve & gauntlet. I wasn’t yet on Medicare. United covered it--but the vendor (Second Act) didn’t accept United, just BCBS. The shop closest to you (Geneva?) might. Unfortunately, neither Medicare nor its supplements will cover it. (That’s what the National Lymphedema Treatment Act, stalled in Congress though with bipartisan support, is for). I’m lucky I can afford to pay for several sets of my own.

I LOVE Breakfast for Dinner! Mostly I just love Mashed Potatoes and Gravy no matter what time of day. I make my own mashed potatoes with butter, milk, and sometimes cream-cheese... and the packages of Gravy mix are GOOD! I even add a little bit of cooked bacon bits. My Mom always made Bisquits & Gravy for Sunday Breakfast, with Bacon and eggs.

Mothers Day is just to honor "us".... I thanked my Girls for making me their Mother.... But sometimes kids just can't be bothered... or don't think it's "special".... Don't let it bother you.... It is their deal..... we can't let our own feelings get in the way of us having a beautiful day.... maybe going for a walk, or going to get a Starbucks....

We are "special"! We gave birth to our children, but so many of them just go along their merry way without any regard for us.... I know a lot of Mom's who don't have much of a relationship at all with their "children".... It's alright.... That's what we are here for.... just us friends.