MIDDLE-AGED WOMEN 40-60ish
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WAAAAAAAAAAAAAAAAAAAAAAAAAH! I missed the real Elimar???????????????
I'm still picking up party glasses girls! You really rocked. I was driving my over-heated car (which now has a new radiator as of today) home late Sunday night, so missed everything!!!! Can we have a repeat soon, or are your hang-overs too pounding still?
PMom-PM'd you.
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PM, AM SO GLAD THINGS SEEM TO BE TURNING AROUND. WILL BE A PART OF THE PRAYER GROUPsorry, for you. its ascary beast, and a sneaky one at that.. dont mean to chasnge the subject; am having one of those days.. wound care oked me today, got bloodwork to see if im clear of mrsa.. this always happens, its like i had to suit up for war, now itss over (i hope) and all of a sudden, im depressed..RTSD.. luckily, will see therapist thursday. hwe missed all the drama, has been in spain the whole month. im so angry with the ps, i still havent made an appt. i really liked him, trusted him, and he really scr*** me over !! i really have lost faith in my health team over this..i hear you guys talk about your onco; i felt the same way; till she denied an appt. just to draw blood "in case" of a DEADLY infection.. how do i trust them again.. someone said..don't bother with her, she's just there for chemo.. is that really true? i thought they were like front line in my care team.. if not them, who?? i dont know, am feeling sad, discouraged, confused. im worn out. three anti depressants, cant manage any.. its the darn ms se's from everything... well, got a new book, fantasy...calgon, take me away.... light and love, 3jaysmom p.s. did i really look that bad on the picnic table last night?
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Eph, I have a secret, but don't tell Elimar. I have a screen shot from Sunday so I can see her once in awhile. It helps to not think you are talking with a pink fuzzy dog.
I am coming up on my one year anniversary of finding all of you. Maybe we can have a party on September 9th.
3Jays, I wish there was something I could do to make you feel better. I feel that your onc is your team leader for the rest of your life. Your primary care physician is good, but when it comes to BC or and other type, I think they repond to symptoms. My team has me on six month follow ups. I have my CBC, tumor marks, vitD and other tests done. My mammos are scheduled, and MRIs annually, and they are following up on any abnormalities they find. My insurance company rarely balks at her line of tests and tx. I am comfortable with the care I am getting right now. Maybe you should look into interviewing for a new onc.
I did not get my new/current onc until 2 1/2 years post last chemo. She never questioned me about becoming her patient at that time.
Best wishes and support to all of you who are going through the additional stresses after your initial dx.
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TAKE a picture, Meece, it last longer.
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3jaysmom, it will be excellent to be clear of the MRSA. One thing you can put behind you. That seems to be the problem in Mid-Age. Work on one ailment, two more pop up in the meantime. Not neccessarily anything big, but it gets to the point where you feel there is always something nagging at your health. (Oh, and next party, fyi, you can crash in the guest room.)0
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On a random note, I was really disapointed with the new study that PEM scans and Gamma Imaging carry such a risk of radiation exposure and others cancers beyond breast.
I had a PEM and it probably saved my breast. The MRI showed two tumors, when PEM showed there was only one. I really hoped these were the thing of the future, they are far more accurate than mammograms,especially for young women with dense breasts. Now they appear to cause higher rates of other cancers down the line.
I had even volunteered to provide a testimonial for the manufacturer. Bummer!
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I'm finally home from my visit to the Bay Area and I missed the entire party...bummer. I'll just pretend that I celebrated off-site. I did get to see my parents, sister, daughter and son-in-law, best friend of 47 years and former work buddies, so it was fun. I'm glad to see the party was such a success with all the gorgeous clothes and yummy food.
Monday was my 6 month check up with my oncologist. I've had a nagging cough for months so she had a chest xray done. I'm now waiting for those results. I had a bone scan and lab work 6 months ago because I was having neck problems, so she felt that if anything "bad" was in my lungs it would show up best with the xray. Great....I get to wait...I'm thinking it's just my body adjusting to the fog and all the different plants and trees we have up here.
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cookie, can you post a link to the study? I have not seen it. I remember reading something about how much radiation the clinicians would receive performing the PEM scans, but I believe the conclusion was that it was a pretty low dose and that the clinician could perform thousands safely in the course of a year. Not like they never reverse themselves on these findings, tho'!0
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thanks, ladies, for your support... today is a little better. will be having pet scan onward and upward..that was scheduled before i got mrsa..and when the results r in, will have talk with onco.. i keep hoping she's not cogniscent of whars happening, the n. pract. keeps me at baay, but if she really couldnt care less about possible mrsa from recon; then, i guess i gotta look again...and elimar, thanks.ll take the guest room next year. booze just hits too fast to get there. light and love 3jays
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Thanks. I read it. That is a bummer. My dense breasts are pretty good at hiding things from a plain old mammogram, and it would be nice to have a safe, more accurate alternative for screenings. I have asked for, and received, screening with ultrasound since I had my lumpectomy. They prefer to just haul out the u/s for diagnostics, so I had to plead my case to get that.0
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I mean they have a point that the radiation is nothing compared to what we get blasted with during rads...but that's a whole other pandora's box!
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All the more reason to always be followed by your "team". We jsut need to make them aware of what type of tests we want.
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Thanks for the link, very interesting article! At this point I have become so radiaiton phobic I won't even let the dentist do routine tooth x-rays. Part of the reason I had the right breast removed was fear of the cummulative radiation dosage since I've been getting mammograms since I was 30 (I had atypical hyperplasia found on excision biopsy of a lump). I'm certain the radiation exposure contributed to my diagnosis.
Before anyone says anything, yes, I do know that I'm not being totally rational, and there was probably more benefit than risk to the mammograms. But for now, I'm going with my gut, and avoiding all forms of radaition, and if I'm not rational, well, so be it! The ony one I'm hurting is me, and maybe the dentist's bottom line!
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I'd had a cyst burst during a mammogram, so had 2 years of ultrasound for screening. They would only screen the areas of concern from years earlier. I recall saying "It hurts over here" and pointing to 6 o'clock on my left breast. "We don't ultrasound for 'hurt'" the tech snidely responded. Too bad, that's where my cancer showed up!
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Is there a B/C risk posed by u/s? I did not think so, but I did have this happen: After my surgery, the scarred area was getting tight and I went for massage therapy. I had read that u/s was good for breaking up scar tissue adhesions, so I asked if I could get that as part of the therapy. The PT said it was not indicated for cancer patients. Something about thermal activity caused by the u/s that might stimulate cancer cells to grow. Of course, this might be a protocol that applies only to therapeutic usage of u/s, and not how they use it for screening and diagnostics. I did not sleuth any further, I just abandoned the idea of getting it as therapy at the time.
I remember I didn't even like being called a "cancer patient" at the time. I think I said something like, "Well, supposedly all my cancer got taken out!" Wishful thinking on my part!!!
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E-at the beginning of radiation last Sept, my neck/shoulder muscle that kinks up periodically decided to go into MAJOR tightness/pain. Massage wasn't doing it so I went into the physical therapy unit that I had gone into several years prior & asked for the ultrasound therapy, which had cured me then & there the previous time. I was also informed that u/s was not allowed on cancer patients & they refused to help me. My onc, BS, PCP & rad onc were floored. But apparently that unit has since written policy based on the stink I raised about how they WILL NOT do theraputic U/S on breast cancer patients (I don't know about other types of cancer)
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elimar and seyla, first of all, thanks so much for the happy dancers ... very sweet of you both
eli, re: dense breasts, ask your doctor if there is a BSGI machine anywhere in your neck of the woods. I had that done in June for an area of my radiated breast which turned necrotic (hard lump of fat) in one section. They mammo'd and mri'd and u/s'd every 6 mos, did a punch bx and an excisional bx all with negative results (good things there!) The last time I was at my surgeon, she said she'd like to MRI again...it had been 6 mos...and I made a face because I think breast MRI's are the most uncomfortable thing ever, and she said she'd have her nurse check with my ins co to see if they'd pay for BSGI (Breast Specific Gamma Imaging). They did pre-approve and it wasn't bad at all. Injection first, so yes there is radioactive agent, but supposedly flushes out w/in 24 hours. The machine takes a serious of pictures and it's supposed to be more precise than mammo or MRI. It doesn't replace mammo, it's a supplement. When I saw the benefit statement, the charge was around $1,500 so frankly, even if they hadn't paid, I think I would have (asking for a discount of course for self-pay) because I've just had really bad experience with the breast mri's. Anyway, those with dense breasts might want to check with your docs about that.0 -
marlegal, we got on the imaging subject due to an article cookiegal had read. (The link is above.) An excerpt says this:
"But a single breast-specific gamma imaging or positron emission mammography exam exposes patients to a risk of radiation-induced cancer that is comparable to the risk from an entire lifetime of yearly mammograms starting at 40, according to Dr. Hendrick’s study."
That's why I said "Bummer."
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hmmm.....I'd seriously like to read more, because I researched many articles before agreeing to the BSGI that said something totally different. Food for thought, for sure. I did see the link that Susan posted, so I'll check it out and try to cross-reference for backup studies for that one, and for the ones I had found earlier that said the risk was below minimal. Thanks eli, just another sign of how we have to be proactive for ourselves!
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You might find contrdicting studies...I, myself, had read an article not too very long ago that was saying the PEM exposure for the technicians giving them was minimal. I wish there was agreement on these finding, but the cynic in me always says, "Guinea Pigs R Us."
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sooo true. I guess sometimes I go with my gut and that makes my head feel better about it, and when my head is okay, I figure it helps me physiologically .... know what I mean? Placebo effect and all that. I believe the drugs are working, and the treatments effective, therefore they are (in my world!!!) And almost all medical people agree that attitude has a huge impact, sooooooo ....
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Radiation exposire to the STAFF is minimal, but when the patient gets injected the entire body is exposed to radiation for however long it takes the kidneys to clear it out of the system. The risk quoted in the article was for the patient, not the technician.
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Just found this one too though ...
"A recent article in the journal Radiology by R. Edward Hendrick, Ph.D., makes a dubious comparison regarding the dose of radiation screening mammography (X-ray) to the radiation used in advanced diagnostic tools, such as BSGI and positron emission mammography (PEM). Dr. James Johnston, Professor of Radiologic Science at Midwestern State University in Texas notes that while this article provides important facts and useful information, the primary message should be one of appropriate use and not condemning any one modality based on an apples and oranges comparison. As stated in the article, "a single BSGI or PEM is comparable in terms of dose and lifetime risk of cancer induction to a single chest, abdominal, or pelvic CT examination," which are ordered thousands of times each day in the U.S. Furthermore, the same radiopharmaceuticals used in BSGI and PEM studies are used in many other nuclear medicine exams every day such as cardiac stress tests and bone scans, in similar or higher radiation doses. And as Dr. Hendrick noted in the Radiology article, in most cases the balance of risk to benefit favors the use of imaging."
(back to me writing) It shouldn't be this hard for us to balance things
I guess I just keep going back to trust ... I chose my surgeon and oncologist after long interviews about their approach to things and how they stay up-to-date, so I can rely on them with confidence, as much as anyone can I guess.0 -
marlegal, your article makes the comparison to a CT scan, which has been getting lots of press of late as being over ordered by physicians (I bet it is thousands a day) and as having many times the exposure amount than a regular x-ray I still find that amount worrisome.
Cookie's article was not condemning the BSGI or the PEM out of hand; just as the CT is stronger, yet more useful for more precise imaging. Risk vs. benefits. Bottom line, women need accurate imaging regardless of the composition of their breasts, and, in a perfect world, with NO risk involved. More advances needed.
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wow...I set off a firestorm!
I had a PEM and was very grateful for the information. Otherwise they would have thought I had multi focal cancer and probably would have had to have a mast. So I have been very enthusiastic about them.
The NYT article was one of many about this new study. PEM's manufaturer says they can now do them with %70 percent less radiation.
I was really hoping this was an alternative to mammo for young women.
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Just a small note of clarification ... if I sounded argumentative, it certainly was not directed to anyone here - especially cookiegal who I've met in person and adore (hell, I gave her one of my last beers, and I don't do that for just anyone!!) It's just because of the unfairness that we have to do so much legwork on our own, and even then we can't find a consensus of opinion!! Happy Friday all 0
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It's all good. If we read contrdictory things and air the ideas here it is only because of our desire to really know about something.0
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Love the new "Topic" picture above! What a beautiful group of sisters!!
Where/when was that taken?
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Dunno, Valjean. I can only take credit for finding it on Photobucket and breaking with reality long enough to imagine myself on that retreat. It looks casual and friendly, very suitable for us.0
