Illinois ladies facing bc
Comments
-
Technologies of the soul tend to be simple, bodily, slow and related to the heart as much as the mind. Everything around us tells us we should be mechanically sophisticated, electronic, quick, and informational in our expressiveness - an exact antipode to the virtues of the soul. It is no wonder, then, that in an age of telecommunications - which, by the way, literally means "distant connections" - we suffer symptoms of the loss of soul. We are being urged from every side to become efficient rather than intimate. -
Thomas Moore0 -
ChiSandy,
Welcome to our thread. We are here to help and receive help, and to be inspired by Jackie's faithful quotes.
This is always the time of the year I dread, the weeks running up to the yearly mammogram. I guess there is mild PTSD associated with the breast clinic. Not from the mammogram technicians, but from the comments made by the elderly radiologist after he declined to proceed with a needle biopsy. Based on the presentation, he didn't think I had BC and muttered that it was melanoma to his staff. They then looked upon and treated me as if I was dying of melanoma mets. Thankfully both he and my BS were wrong and I only had localized BC. So here isto hoping to avoid the US room.
0 -
Perform a kind action, and you find a kind feeling growing in yourself,
even if it was not there before. As you increase the number of your
kind and charitable interests, you find that the more you do for them,
the more you love them. Serve others, not because they are your friends,
not because they are interesting, not because they are grateful. . . .
Serve them because they are the children of your Father, and therefore
are all your brethren, and you will soon find that the
fervent heart keeps time with the charitable hands.W.B.O. Peabody
0 -
Doxie,
I must have missed somehow ( if you posted the original event ) the last mammogram, but so much can go on in a yr. maybe I just forgot. I think we all have anxious feelings when it is time to CHECK again. It was such a big surprise to most to find out from yrs. of GOOD mamo's that suddenly something had gone wrong. Still, I really feel that the experience you describe would make me a blubbering mess likely in need of some sort of medication.
Not sure why I never customarily saw my life as particularly dangerous --- even after a couple of horrid thyroid and stroke incidents. After those happened I just moved on and never expected to have much trouble again from them, or if I did that it would be far more minor than the original incidents. This cancer dx. never had and maybe never will the same parameters. Even after all this time ( dx'ed in 2007 ) not realizing it, when I know all is fine I let out the longest breath ever.
Here's hoping that you have the most un-eventful mammo studies that find you boringly NED.
Jackie
0 -
Life is not made up of great
sacrifices and duties but of little
things in which smiles and kindness
given habitually are what win and
preserve the heart and secure comfort.
Humphrey Davy0 -
doxie I am crossing my fingers, toes and eyes that you have a clean mammo! Hope the old fart has retired.
0 -
Thanks, Redheaded.
Oh, Jackie. You didn't forget. That was long ago - a little over 4 years ago. Thanks for worrying about it.
0 -
All limitations are self imposed.
Oliver Wendell Holmes0 -
HI there Ladies,
I am not sure if this is the right place to ask this, but I am considering getting a second opinion for my breast health care (I am in Chicago area). I have had LCIS and I have heterogeneously dense breasts and I have only had mammograms. So far my physician assistant says that right now, the other kind of imaging is not available to me (it sounds like because she doesn't think insurance will cover it and also because the hospital hasn't acquired the equipment yet, ie. whole breast ultrasound and 3-D mammogram). She basically says I'll be eligible in a year. My last mammogram was good but I need peace of mind. What would you do? I would love recommendation of where to go/what to do. Thank you!!!
0 -
Hi Kayla , Welcome! Where have you been getting your care? Have you had an MRI of the breast? I havereceived excellent care through The Lynn Sage Breast Center at Nortwestern Medicine!
0 -
HI there!
I have been going through North Shore Evanston/Skokie hospital for the past 10+ years. I did have an MRI as part of a study (I received limited results - only that it didn't find anything "exciting"). I am thinking of a second opinion or to just see what else is out there. The University of Chicago hospital looks intriguing (but a bit of a distance from me). I will also look into the Lynn Sage Breast Center. Thanks for the idea
0 -
I want to add that in general, I have been getting good care from the staff at North Shore (excellent radiologists did my biopsies and the lumpectomy I had went well). I just worry that I am not getting what I need as far as screenings are concerned..
0 -
(and if this is not the right place to post - I apologize...:)
0 -
Doing, are you going to Glenbrook, Highland Park, Skokie, or Evanston for your treatment? I had my second knee replacement (L) done at Skokie (first, R, by the same orthopod--now retired--was at Northwestern). I really like the N. Shore system.
0 -
Kayla, MRI is appropriate screening for women with dense breasts. Insurance should cover it, as it is the new standard of care, no longer “experimental." I go to Evanston Hospital too. If you had MRI there before, they’ve got the equipment. I think they still lack 3D mammography; also, their radiation oncology dept. doesn’t have a machine that allows lying prone rather than supine for RT (for irradiating very large breast, prone position lessens lung and heart radiation exposure). It’s not the only breast center in the NorthShore system, though--perhaps Glenbrook has the add’l equipment you need.
0 -
Doing - I cannot share your enthusiasm about Northwestern. I and others have been posting on another thread about the lack of monitoring when you have a bmx. I just saw my MO there, one of the best in the country, sits on the board that creates the chemo protocol for all MO's. He was borderline rude and condescending when asked about monitoring. He said "I wouldn't even know what tests to order, what tests do you want me to order?" He doesn't believe tumor marker tests are worthwhile. Doesn't want to do "needless scans". I'm irritated, frustrated and sad all at once.
I do know that even though Dr. G is one of the best in the country, he is not the best for me. So, here I sit again, about to take Tamoxifen, likely going to get joint pain again,and not even knowing how it is working. I would not want this to be anyone else's experience, if are like me, not exhibiting extensive symptoms, but wanting to know your treatment is working, and therefore worth the SE's.
And here's what is just downright pathetic. There are alot of advances in pharmacogenetic testing, when a sample of your DNA can tell you what meds and dosages will work best for you. Ironically, I can get that level of info right now for my dog through a $160 test through my vet. This type of test is out there in a much smaller fashion at pharmacies for humans, but does not include Tamoxifen or other cancer drugs. There are companies that are going down that path though of including them. But guess who is both their biggest advocate and obstacle - the docs. Liability fears. Sigh.
Fingers crossed my SE's don't come back, because it looks like I am stuck on Tamoxifen with no real info, for another 3 years. And if you have any MO's you would recommend that actually appear to care about their patients, on the north shore, or northwest suburbs, I would love to hear from you.
0 -
-
hi Boatingirl,
I am familiar with the MO you are speaking of, it is so important for your MO to listen to you! My BS is through Lynn Sage, but my MO is through a different oncology group at Nortwestern. She listens to my concerns and is very imformatiive! PM me if you want her name.
I hope you tolerate Tamoxifen! I have to switch to an AL because I had a recurrence on tamoxifen
0 -
Does anyone like the University of Chicago?
0 -
When we recognize that nothing has to go right for us to be happy, that people do not have to behave for us to love them, our walk home can be surprisingly simple. We have enormous power not to manipulate the world, but to be happy and to know peace. -Hugh Prather
0 -
Another late day today --- hope I get my act together better tomorrow.
Kayla, I have had 3D imaging for the last three yrs. or so. It is just my humble feeling that they are about the best way to go. I hope you can find someone to work with -- in fact, hope everyone can. Sometimes choices that way are limited -- mine were, but I really like the Breast Center where I go in Carbondale, Illinois. Not familiar at all with the Chicago area -- just wanted to 2 cents the mammography issue.
Jackie
0 -
ChiSandy,Thank you for mentioning that there are different positions for radiation. I need to start to do my research, I have aRadiation oncology consult next week at Northshore. Have done radiation? Where did you go for radiation?
0 -
Doing, I start radiation this coming Mon. (sim session is tomorrow). Because of my age, tumor size, location, grade & oncotype score I am a textbook candidate for accelerated partial breast radiation (16 zaps); and because it's to my right breast with a limited focal irradiation area (so there's no question of lung or heart damage), I can safely do it supine despite my large (and ptotic*) breasts. I go to NorthShore Evanston Hospital, and my RO is Dr. Shaikh. He is terrific, as is my entire team.
BoatinGirl, my MO is Teresa Law at Evanston. She too is wonderful. I have found my entire team patient, respectful of my wishes and not at all condescending--in fact, they are appreciative of my efforts to learn all I can about my treatment options. And none of them have that “hurry up, the meter's ticking" look in their eyes.
Kayla, one of our other IL sisters who lives in the (very) far s. suburbs has decided to make the longer commute up to Hyde Park for U. of C. itself (despite its northern location, the NorthShore system switched its university affiliation a few yrs. ago from NWM to U. of C., and as such is also Mayo Clinic-affiliated. NWM affiliates with Cleveland Clinic). I have a friend who used NWM/Lynn Sage because her husband (my former ortho surgeon, now retired) used to operate there before he switched to NorthShore Skokie & Glenbrook in the last years of his practice. She had ADH, but Dr. Bethke advised and performed a lumpectomy anyway to prevent her ADH from possibly turning malignant in the future. Not sure if he put her on an AI. (She's only a couple of years younger than me, so I doubt tamoxifen would have been preferable).
*Re “ptosis:" anyone remember those old Playboy cartoons by the late Buck Brown featuring “Horny Granny" with breasts hanging down to her waist? That's me (from the neck down, that is). Probably what contributed to pulling my SNB incision open and gushing seroma (at least acc. to Dr. Winchester, the surgeon who had to suture it closed a couple of weeks ago).
0 -
Let go. Why do you cling to pain? There is nothing
you can do about the wrongs of yesterday. It is
not yours to judge. Why hold on to the very thing
which keeps you from hope and love?
Leo Buscaglia0 -
Kayla:
I am with NorthShore and my last visit at Evanston office was for a routine in September. I have been been cancer free for many years and was diagnosed stage 3. I get an annual mri as mamograms never picked up the problem and my breasts are dense. Last visit I was advised to skip the mri and some mention was made of the sonogram. I said I didn't want to skip the mri and they were accepting of that. The sonogram couldn't find the original problem either as the bad thing was just behind the nipple and of course....the dense breast was still hiding it.Ten months after that I had a rash and had a biopsy and that showed the tumor that technology never showed. My last visit in September included a discussion that I should PERHAPS skip the annual mri as it found everything and that could mean doing more tests than needed. In other words, false findings. I said I would rather error on the side of being conservative and HAVE the mri than to chance it. No argument from her.
Good luck!
Zap/Susan
0 -
Zap/Susan
Thanks for your reply. My BC and his assistant right now keep saying that the mammogram is enough for me now. Do I keep pushing for other screenings now? (ie. 3-D mammography, ultrasound). If I get another opinion, I'm wondering if I need another breast surgeon or an oncologist? Not sure what to do
0 -
We're all assigned a piece of garden, a corner of the universe
that is ours to transform. Our corner of the universe is our own
life--our relationships, our homes, our work, our current
circumstances--exactly as they are. Every situation we find
ourselves in is an opportunity, perfectly planned by
the Holy Spirit, to teach love instead of fear.
Marianne Williamson0 -
Above all do not lose your desire to walk. Every day I walk myself into a state of well being and walk away from every illness. I have walked myself into my best thoughts and I know of no thought so burdensome that one cannot walk away from it. But by sitting still, and the more one sits still, the closer one comes to feeling ill. . . if one keeps on walking everything will be alright. -Søren Kierkegaard
0 -
Kayla23 One time Char and another friend (member on this thread but doesn't post anymore) had an issue trying to get MRIs on their breasts because they both had dense tissue. Both went to Northwestern. The friend went to my oncologist for a 2nd opinion. My MO said they should but it was ridiculous that they should change MO just to get the scan. She wrote a note to their MO. My oncologist is highly regarded so if you want her name for a 2nd opinion send me a PM.
0 -
Kayla I went to University of Chicago. I can't comment on the use of MRI for routine follow-ups because I had BMX, but you should at least be getting ultrasound. I do know that anything suspicious led to ultrasound and MRI. My breast surgeon at U of C is Dr. Jaskowiak and I love her.
Boatingirl, the reason they don't do scans for routine follow up is they have found no benefit, sadly. Whether you find it early through a scan or wait until you have symptoms, there is no survival benefit. However I still feel an MO can nicely explain that and listen to your concerns. This is a long term relationship so find someone you like better. And the genetic testing for tamoxifen metabolism is still controversial. The original studies said it didn't matter, but now they think the studies were flawed, that you have to look at the genetics of healthy tissue, not tumor tissue. So now "more studies are needed" our favorite line. I personally think I was a non-metabolizer, because I recurred on tamoxifen and I had no side effects on tamoxifen, so I wish I had been tested. If you get hot flashes that's probablly a sign its working for you.
0
