I say yes, you say no, OR People are Strange
Comments
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E - the worst thing was the pharmacist said the drug he gave me (an equivalent to penicillin which I'm allergic to) can cause diarrhoea, so she recommended taking pro biotics 2 hours after a dose once a day. Imagine if it hit me mid flight
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OMG.....!!!
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Suzie so sorry - both about your tooth (I hate it when my teeth act up) and your SIL. The medical profession is still so far behind when it comes to psychiatric problems. At least your DD and grandbaby are in New Zealand, which if you have to travel, what a wonderful place to have to go to.
E - so glad to see you on line. How are you feeling?
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Alexandria - much better physically, thanks. I talked with my oncologist at length on Friday and we decided that "conscious sedation" (isn't that an oxymoron?) will never ever again be an option for me.
Was it pip who asked - why couldn't I ride if the doctor had to use a hammer on my spine for the biopsy? I put that to my onc and he didn't have an answer for that. My horse comes home on Saturday. I WILL ride. Dammit.
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Alexandria - they are here in Adelaide, South Australia, not NZ. The booking I did the other night is to go to my Uncle's 60th wedding anniversary in December.
The good part about going to Adelaide is that it is the premium wine growing region in Australia, but I doubt we'll have time to visit any wineries - we're only going for a 4 day weekend. Last year, when we went down to meet our 7 week old Nicholas - 8 dozen bottles of wine followed us home
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E - missed your post re the onc visit. Good on you - ride that horse woman!!!
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For Athena............
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E - If Samson doesn't startle too easily, and since you're an experienced rider, I don't see where it's that big a risk - if you ride flat. I wouldn't go over any jumps. If you were not experienced, that would be different Wear your vest, do a nice slow canter, and enjoy!! Probably your onc doesn't really anything about riding. Glad to hear you're feeling better.
Suzie - my mistake. Still, sorry about your daughter and SIL. Envious of the trip to NZ. HAve wanted to go see the place since LOTR, but a little too pricey air travel from NJ.
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E - better physically is a start
now to get up Up on the Beautiful One...baby steps, maybe walk with him first?Suzie - IMMODIUM...I couldn't go anywhere without it - even take 1/2 a tablet before a "problem" sometimes when my stomach is feeling grungy. I've always had this, even b4 bc.
Thinking of our Lioness - hoping she's with her family, and getting a treatment plan sorted out...
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E -- read a caption on another picture that said -- if God made anything more beautiful, he kept it to himself.
Jackie
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Sun is out today and it will climb into the high 70's. Trees will finish filling in quickly with those temps. Nice for all that work we need to do outside.
Suzie -- hope the tooth is better quick. A couple already mentioned how hard at times to deal with psychological problems. I think ( seems to be something to it here maybe ) that age sometimes helps ( along with a lot of other issues ) it to flourish.
Still smiling over ( watched a couple more times ) the Pres. remarks at the Correspondents dinner.
Jackie
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I'm going back a couple days, as I haven't been around this weekend.... but in regards to treating DCIS - I have to admit that the subject makes me crazy - so I'll start there. From what I've read, they have "decided" that some DCIS never progresses to invasive, based mostly upon the fact that some women who have died from other causes have been found to have DCIS. Therefore, they say, some women's DCIS never does become full blown breast cancer. Therefore we shouldn't treat DCIS until it becomes invasive. OK. MAYBE not treating DCIS until it's invasive makes some level of sense for some people. However, that should be the choice of the woman with the DCIS (IMO), not the insurance companies who want to save money. (And, I will freely admit, I am of the opinion that all DCIS, given enough time, will become invasive. MAYBE you won't live long enough for it to become invasive, but maybe you will... and surgery (especially reconstructive surgery such as DIEP) is much easier to handle when younger than when older)
Based on what my oncologist said, if I had died of some other cause a year before I was DX, I would probably have been used as an example of DCIS that "never" became invasive. But I didn't die then. Instead my DCIS (which was 6 cm - so was certainly not insignificant in and of itself - and had NEVER BEEN FOUND IN A MAMMOGRAM) broke out into invasive in more than one spot. AND it broke out right on top of a lymph node. So this person who was absolutely religious about getting mammograms, one year from my last "clean bill of health" was diagnosed with two invasive tumors, 6cm of DCIS and positive lymph nodes. If I had waited another year before my next mammogram - I probably would have been stage IV at diagnosis instead of stage IIa.
The doctors (who in my opinion are paid off by the insurance companies) want to "prevent women from having to endure unnecessary treatment" (read that as save the insurance companies money) by not treating DCIS, and rotate back the yearly mammogram to every other year. No thank-you. They already "saved the insurance company money" on me. I asked the doctors repeatedly if there was some additional kind of test they could do other than a mammogram. No one EVER mentioned a breast MRI. My maternal grandmother died of BC, my maternal aunt died of BC, and my mother had BC - but when the doctors would hear that they each died in their 80's their eyes would glaze over. I was diagnosed at 60 - as a result, my sister got a breast MRI (fortunately it was clear), and now they tell me to make certain my daughter gets mammograms... Somehow four in one family is a bigger trigger than three in one family....
All that aside - I am VERY grateful that the oncotype test was developed before I was diagnosed. As a result of that test - and the group of doctors I went to see (Seattle Cancer Care Alliance), I did not have either radiation or chemo. The first doctor I saw was planning on giving me both. I want them to put more money into research and less into "awareness" and their own pockets. I intensely dislike Komen primarily as a result of them attempting to kill Planned Parenthood and wouldn't give them a dime, but I happily donate to Fred Hutchinson.
OK. Rant over.
Athena - if you are reading, please know that we are thinking (and worrying) about you. We all are hoping for you to have as much good news as possible.
E - I'm glad you are going to ride. The doctor seemed like an idiot to say absolutely not. It would be one thing to tell me I couldn't ride, as I haven't been on a horse since I was about 35 - it's a totally different thing to tell someone who is truly an experienced rider. I don't think your oncologist understands that maybe he doesn't know everything there is to know...
Suzie - have a great trip - maybe you can squeeze in a trip to one (or two) wineries.
... It's so fun to be able to be there for grands' birthdays. Sorry your SIL is experiencing difficulties. Mental health issues can be so very hard on the family. -
Trying to catch up quickly here. Glad to see that Glenna and Chickadee are doing well!
Sorry about the hellish weeks ((E)) and ((Athena)) have had ... hoping with all my heart that things get much better for you both. And quickly!
gardengumby ... Komen is still spending their money on awareness and pushing mammograms when it has long since become apparent that there are bigger fish to fry. They should have redirected those resources to things like research to determine 'which' DCIS might go invasive and into finding better treatment/a cure for Stage IV at least a decade ago.
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About to go out on errands. Been working on cleaning up and cleaning out at my MIL's house so we can get it on the market. Also have to see Dad - buy him groeries, pay the caregivers. The Alzheimer's continues to advance, but he still recognizes me.
Been hoping to get back to writing. have only done a bit since my MIL's illnesses - maybe this afternoon.
Might not be back on line until evening - if then.
GG - absolutely agree with your rant.
Athena - waiting and hoping.
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Wabbit, did you have any DCIS when you were diagnosed? How much? Like I said - I personally am of the opinion that given enough time all DCIS will become invasive - just some will do it faster than others....
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Haven't posted much here lately, but certainly am thinking about Athena and E. And everyone else going through the good and the bad.
We're enjoying a brief taste of spring before we get hit with a little bit of rain/snow tomorrow night. Better cut my daffodils... I am soooo ready to be done with this. I need warmth and blossoms!
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gg - to me, this is the "takeaway" line from your fine words: However, that should be the choice of the woman with the DCIS (IMO), not the insurance companies who want to save money.
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gardengumby ... no DCIS. But I am no poster girl for mammograms. I was not doing mammograms. I know (due to a dimple that the tumor caused under my breast) that mine had probably been there for at least 6 years. And it had not spread even to the lymph nodes. I was kicking myself at first ... but really finding it earlier would have done nothing for me except put me on the treatment merry-go-round earlier. I really do not regret those extra carefree years when I was clueless. Not necessarily wise ... just my truth.
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GG, my sister started out with a lump (unspecified). She put off getting a mammogram or any other testing because her husband had non-Hodgkins lymphoma and then metastatic colon cancer and she said she couldn't cope with both of them having cancer. She waited two years beyond when I was diagnosed. When she finally went in, they scheduled her for emergency surgery. Her breast was full of cancer -- a veritable Basking-Robbins of cancer, we said. IDC, ILC, DCIS, Grade 2 and Grade 3 mixed. 7 out of 7 nodes were hot. She was dx at Stage IIIB and got 2.5 years of disease-free survival until she progressed. She got 3 months more after that, dying in February last year. I am convinced that she started with DCIS -- my mother got it at 81 in 2002 and I got my first in 2007. Had my sister gotten regular mammos and had her DCIS treated promptly, she would still be with me today. She knew she screwed up, but she also accepted the decision she made. Still makes me crazy, though. She was only 69 when she died.
L -
The treatment merry-go-round - good phrase. I, on the other hand, was religious about mammograms, as I knew that the odds were very high that I was going to get cancer one of these days (in addition to all the women in my family with BC, my dad died of prostrate cancer). But even though it (the DCIS) was over 6cm in diameter - they never found it with a mammo (?). As for the IDC - even after I knew exactly where it was, I couldn't feel it, so the "self-examination" certainly did nothing for me.
I don't blame you for not regreting those years when you were "clueless". Not knowing about something bad isn't quite the same as not having something bad happen - but at the time it feels the same.
Nothing wrong with that IMO. I sure am glad that your diagnosis was "only" stage II. -
Libby - I'm sorry about the loss of your sister. I hate this disease - it wastes so many lives. I also despise the more recent attitude that DCIS isn't "really" cancer. Really??? I often wonder if those people would feel the same if the @#$%^ was growing in THEIR body. I still at times mourn the loss - I'm not certain anymore if it's the loss of my breast or simply the loss of feeling safe, and trusting my body to be able to heal.
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Hope I didn't give the wrong impression. I just got lucky. But I do understand that sometimes finding it early makes a difference and sometimes it does not. Sometimes mammograms find it and sometimes they do not. Ergo ... they need to move on and attack determining which is which and how to treat it after it is found. And even me ... the Queen of Denial ... could not ignore DCIS after it had been found.
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When I had my last mammo in March, the technician had just returned from a seminar in Europe, where she learned about a new mammography technique being developed. I cannot remember all she told me but I think I remember her saying it involved an injection. Has anyone heard anything about this?
We can drive ourselves crazy trying to figure out what caused our beast, whether it was discovered too early or too late, whether the tests to determine it were good/bad/useless. As I see it, the mammography issue is sort of like Pandora's Box. Once opened, there's no going back. If LCIS (as my first biopsy showed) or DCIS are found, then there's no option ethically speaking but to treat it. Of course, the patient makes the final decision but, other than situations such as HL's sister was facing, what patient is going to say "No, just leave it alone" unless the patient has very few years left due to age or other chronic or terminal illness.
And the patient makes the decision to have the first mammo. My biggest question is whether or not yearly mammos for -- let's say 15 years in a row -- can actually cause BC. I worry about yearly mammos on my remaining boob. Do any of you? I know that the amount of radiation in the newest digital machines is considered miniscule, but still......And of course there is no empirical research to show that too many mammos caused the BC, instead of other factors <sigh>.
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I had regular mammos. Small spot eventually found in one of them. When the breast was removed (unclear margins with the lumpectomy) it was found to be full of cancer. Some tumours the same size as the one eventually seen on the mammo. Mammo missed them all!
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Editing
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GG, it sounds as though our cancers presented similarly, but my perspective on the "overtreatment" issue is a little different from yours. I also had two small invasive tumors, a big whopping 4.5 cm hunk of DCIS, and one positive node. I'm glad my cancer was found and treated and I tell myself that my treatment made a difference. But I don't really know. Maybe treatment failed and the cancer is still lurking somewhere (god, I hope not). Maybe I could have waited a year, two years, three years, five years and still been diagnosed at exactly the same stage (my cancer was slow growing; just my bad luck that in its slow, lazy way it meandered over to a lymph node). I'm not second-guessing myself, but you know, it would have been nice to hang onto my breast for another few years, have fewer years for late-onset chemo side effects to take hold, etc. etc. So I "get" the concern about overdiagnosis and overtreatment.
I also don't think the concerns are driven entirely, or even mostly, by insurance companies. Most of the discussions I've seen have been among doctors and scientists. I've not heard anyone saying that women found to have DCIS should NOT be treated. What I've heard is certainty that SOME women with DCIS do not benefit from treatment, but total uncertainty as to WHICH women those are. So facing ~50-50 odds, we treat everyone who's diagnosed. That makes total sense for individual women at the present state of our knowledge. The question I heard Orensten calling in her article was, how much in the way of resources does it make sense to devote to getting more women to be screened more frequently so that more can get on the treatment train earlier.
I don't know the answer to that question, but I do wish some of the resources devoted to getting 40-something women into screenings were devoted to research on metastatic disease.
Linda
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Nothing in life is black and white. Mostly shades of grey.
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An interesting article about different research: Are Ultrasounds Causing Autism in Unborn Babies?
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I've got nothing to add to the important discussion. Found a 2.3cm grade 3 one year after last mammogram. Large cystic boobs, a strange blessing I think, cuz didn't make it to the nodes. But who knows, best description I've ever heard of bc - it's a crap shoot nobody wins. Once ya got it, ya always worry it's gonna come back, and often it does in some form or another.
STILL thinking of The Lioness, and prayerful for both her diseases - read her member page ifyou dn't know about it. Such a difficult time for her, no matter what she decides to do. Wish we could send her a fancyschmancy dress, or something...well, I was going to email her, but thinks it's best to wait until she posts here.
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