Lumpectomy Lounge....let's talk!
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Traci, so sorry to hear about your mom. May she get through this okay, with the help of a good team.
Leslie, your hospital charges patients for a copy of their own reports & test results? That’s insane. I can see charging lawyers for copies of medical records (there’s a whole industry around that), but as a patient you should have a right to all the information in your charts—just like a client has a legal right to a copy of every document in her files. Does your hospital system have an online patient portal? Those that do send your reports and results to your personal in-box.
As to OncotypeDX, it is not done at surgery, because the tissue sample has to be sent to Genomic Health in California. It costs $4800, but most insurers and Medicare pays for it. Your surgeon or oncologist will discuss it with you, but you should ask if you need it done. My BS’ NP explained to me—when I asked before surgery—that it is ordered only for tumors that are in a “gray area.” Smaller than 1cm, hormone+/HER2-, grade 1 or 2, no positive nodes--it’s assumed chemo would cause more harm than good. Larger than 3cm, hormone-negative or HER2+, grade 2 or 3, more than 3 positive nodes—it’s assumed chemo’s benefits would outweigh its risks. Anywhere in the middle—assuming it’s hormone+/HER2-, then you are a candidate to assist the MO in helping decide chemo vs. no chemo.
Definitely ask about type (ductal, lobular or other), ER/PR receptors, HER2 status, tumor size, node status (the latter two of which will determine staging), grade, mitotic rate, lymphovascular invasion, etc.
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Oh my, Traci, that's awful. And so unexpected. Please let me know what I can do to help. I can go to appointments with her e. G. Prayers for you both & the whole family. <insert more swear words>
HUGS!
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Traci, so sorry to hear about your mom's diagnosis. Hugs & prayers!
Tootsie, my company has a mfg plant in Muscle Shoals which I think is near you. I've been to the plant a couple of times. Didn't get a chance to see much of the area though.
I'm excited. Leaving tomorrow for a bus trip with my Quilt Guild to go to Missouri Star Quilts. A bus full of fabric mad women, lol! We leave Thursday and come back Saturday. Stopping at a Quilt shop along the way & 2 on the way back. Trying to pack light so I'll have room for all the stuff I'm sure I'll just have to have. We're limited on how big suitcase & how much it weighs.
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Trish, I wish I were going with you! There's nothing as intoxicating as the smell of fresh cut fabric.
Traci, I'm really sorry to hear about your mother. When it rains, it pours.
Tootsie, I live in North Georgia, so I am familiar with Huntsville. A few years ago our whole extended family did a big Thanksgiving camping trip to Monte Sano SP.
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(((Traci))) praying for your mom. What a shock for you both. I am glad she's so connected in the medical field. I wrote a post last night but I don't see it. Sloan, welcome back. Sorry about your DH and your dad.
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Tootsie, others have explained and I'll add my two cents. The Oncotype test examines the tumor and give you either a low, intermediate, or high risk of recurrence, either in the same area or anywhere else in your body. It is used primarily to help determine the path for treatment. If you're low, no chemo; if you're high, chemo is recommended; it's that darn intermediate range that makes it hard to decide what is best. There is a range in numbers for each. Several of us here have had intermediate scores, and then have to decide if the risk of chemo outweighs the benefit. I was stunned but happy that my MO requested an additional test that showed I'd be at high risk for recurrence, even though my onco score was a low intermediate. Onco test score only applies to your tumor and not to any children nor relatives.
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Trish, have a wonderful trip! You quilters are a unique breed! I'm not but a cousin and 2 good friends are and cannot pass up a fabric shop
HUGS!
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Sloan, so sorry about your dad. And your husband’s fall must have been terrifying--thank goodness it was just exhaustion from travel & hypovolemia from blood donation. I fainted after the first time I gave blood back in college; and a couple of years later in Seattle I ended up on the local news when they were covering a New Year’s Eve blood drive. I went to donate because Bob was in med. school and doing a rotation at the Harborview ER at the time, and he told me they’d need blood. The CBS affiliate was there because one of their producers was donating and was going to be interviewed on-air. She was dressed to the nines and fully made up; I was in jeans and a t-shirt with no make-up and my hair tied back under a bandanna because I didn’t have time to blow it dry. I was lying there on the cot, squeezing the little rubber ball, when there was a commotion in the next cot—the producer saw the needle and the bags of blood and passed out before they could even do the venipuncture. So the reporter interviewed me instead! I tell people that my first TV appearance was “flat on my back with a needle in my arm,” and wait for the puzzled looks & awkward pauses before explaining.
BTW, that rookie reporter was Ann Martin, who went on to become an anchor in L.A.
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That's a great story, Sandy!
HUGS!
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ChiSandy, I have no idea if there is a patient portal. I haven't heard of one yet. As far as them charging for the reports, well, I'm in Canada. All my healthcare is covered, I pay for none of it, but what the government pays the doctors doesn't cover, or they won't pay for, all the doctor's notes etc that people ask for. So most doctors charge for photocopies, signing papers for work, etc. It's normally around $10 I think. My GP won't charge me because I've been a patient for 30 years now...they (the doctor and the receptionist) are almost more upset than I am that I have BC!! My only "problem" there is, I don't know when my GP will get a copy of the report, and they are down in Toronto, I'm about 40 minutes north of the city now, so it's a road trip after work for me to get down to get it. Not a major deal, but I took my daughter down for an appt on monday with them after school and the traffic was so bad it took us almost 2 hours to get home. I hate driving down there now. I'll do it though, if I know when they will have it. I want the piece of paper!
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Good heavens—haven’t they heard of faxes, scanners and e-mail attachments?
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Maybe my GP's receptionist will email them to me...I don't know. She just said she will let me know when she has them.
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Hi Leslie, being at a one of Cancer Care Ontario's 14 regional centres, as I am, you should have been assigned a portal where you can get access to your care team, all appointments and any reports. I was given my login/password information by the nurse navigator the day I met with my surgeon and had my core biopsy. I'd call reception at your cancer centre and ask about it. Pathology reports are never posted until you've met with your surgeon or oncologist because they want to ensure you see it for the first time in the presence of your doctor so that's why I always just asked my surgeon for the report at the end of my appointment and he just handed them over - I didn't want to wait to have the physical report in my hands. Good luck!
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Thanks Grazy. I'm being treated at Southlake, which is one of the cancer centres, but no one has given me a password that I know of. I'll take a look back through my papers tonight. I don't remember anyone saying anything. hmmm. If I can't find it, my appt with the MS is on Tuesday, so I'll ask then.
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Sandy, great story and I loved Ann Martin!
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Today I had my 5th Chemo session and the 1st one with Taxol. I was given steroids to take 12 hours before treatment and the same for 6 hours before treatment (5 pills each). At the clinic I was given Benadryl and Zantac, then a 30 min. Saline drip was started as a timer. After the Taxol was started and it was a 3 hour treatment, followed by a 10 min saline flush of my port. the final step was a flush the port with heparin. I was good to go. My BFF Luann, picked me up and drove me to her house where I had left my car. I went grocery shopping and then went home and slept for about 2 hours.
Next time my session will be 5 and 1/2 hours. They are adding the Herceptin with the Taxol. I have to be observer for 1 hour after I receive the Herceptin.
Grazy -- Thanks for the information about the portal. I was not given any information at Juravinski about this either. I'll check into it too.
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Elizabeth, glad your chemo went so well today. Fingers crossed that you continue feeling good. Glad you have such a great friend.
HUGS!
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Elizabeth, glad it went well & hope you don't have any se.
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Elizabeth, may your chemo treat you gently and your tumor cells fiercely.
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Michelle, both my surgeons have done fellowships in oncosurgery to the "nth" degree;
thanks for your post. I am always encouraged by your posts; as far as my sons, I am
urging them to be evaluated; pancreatic cancer runs in both sides of the family (my uncle
died from it and the boys dad has just conquered it for the time being). I am meeting with
my plastics guy tomorrow to decide on my options. And I would like to reiterate Peggy's
comment.....how tragic is that for that young family; my heart goes out to them.
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DaraB, I meet tomorrow with my plastics guy; hopefully I will be able to nail a
surgery date soon. I will ask my surgeon and plastics guy and if necessary my
radiologist to to order the oncotype testing; I believe they have plenty of tissue.
My curiosity has been deeply aroused. Thanks so much for your post.
HUGS !
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Sandy... I LOVE your stories!
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TTTT, pancreatic cancer can be genetic? I don't know why I'm surprised it might be. But I think that's wise to have to boys tested. That's quite the family history
HUGS!
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tbalding, Muscle Shoals is only about an hour and a half or two from Huntsville
where I live. It would be so wonderful to actually meet one of my bc sisters.
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Peggy, you would not believe my family history....colon cancer runs in both paternal
and maternal sides of my family, not to mention lung cancer, Parkinson's (not to mention
that I have a tremor and seeing a neurologist every 6 months). But never breast cancer
and I know that age is a predominant factor versus heredity. Whatever will be will be
we cannot change our genes, but we can be vigilant in knowing our bodies.
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tata...I visited the Huntsville space and rocket museum in April. So cool!
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TTTT, what a swell genetic pool you inherited. At least you can be alert for them. And, as you know, all tremors are not Parkinson's. My DH had it along with several other things. It's shitty but I don't need to tell you that. I'm glad you are keeping on top of the tremors - that's vital no matter the cause.
HUGS!
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mustlovepoodles, where in North Georgia do you live; I know where
Marietta is and Cartersville.
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I have a very wonderful neurologist whom I see every six
months. Primidone has been a godsend because the tremors
would be much worse without it.
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TTTT, I'm not familiar with Prmidone. It's so hard finding the right neurologist, glad you did!
HUGS!
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