The Hermit Club
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I agree with Teka. Stage IV basically means invasion beyond lymph into organs, bones, etc. My tumor was 6.8 cm so almost as big as yours, they took 8 lymph nodes of which 4 were malignant. There were cancer cells in the muscle tissue, which they took part of for clean margins, and even though the PET scan did not show it, there were cancer cells in the "healthy" breast as well. MO told us that if I had not elected to have bilateral it would have developed into tumors in not very long. Also, I have one lymph node behind the sternum that lit up in the PET scan, but which they didn't remove because it would have meant opening the rib cage. They are hoping that between the chemo and the rads they will get it all. My point is, even with all that I'm stage IIIC. So if you have no positive nodes, and no mets, I don't see how they can call it stage IV. You really need a second opinion, honey, and you need it soon. There are charlatans and quacks out there with medical licenses, taking advantage of people who aren't wise to their ways. You've done well to come here and get informed. Best of luck.
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Looks like I go one of the quacks! The thing that was funny about it, I was referred to her by my BS who I trust wholeheartedly!
As if dealing with this wasn't bad enough, it looks like I might have to take my cat to the vet soon. Hubby and I both think that something is wrong with him. He's drinking way too much water. I scoop the litterbox on a daily basis, but even with that I am having to change his litter twice a week. We have been using the same brand of litter and cat food that he's been on since he was a kitten (he'll be 8 yrs old in mid Dec.). This has got me really stumped and stressed!
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Feline diabetes is not uncommon. Take him soon!
Did you hear the news story about the oncologist who was found to be prescribing chemo for people who didn't need it? It wasn't that long ago. I'll see if I can find it.
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no i didn't hear about that one.
Hubby is talking that if kitty is still acting as he has been, we'll be taking him on Saturday. Just hope its something minor or nothing at all. Hate to lose my Little Man, Booger, Booga, Buddah Kitty, Boogerzilla, Buddah Bear (yeah mommy has given him lots of nicknames) lol
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Here's the story, from Time, August 2013. http://nation.time.com/2013/08/15/medicare-fraud-horror-cancer-doctor-indicted-for-billing-unnecessary-chemo/
Only 10 years and $25,000? Outrageous.
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Apparently there are more than one of them.
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Just read the article and its a horror story. Makes me wonder about my MO who is originally from India.
MO is always late in getting in to see me sometimes 30 minutes after my appointment was scheduled for! And if mine was so bad, then why didn't I have radiation when others like me who were also Stage IV did have radiation? Doesn't make sense even to hubby. I had a check-up with BS in April and she didn't see any sign of it spreading when she did an ultrasound of the surgical site and surrounding area.
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Yipes! Now this has me worried!
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Mommy- you are asking all the right questions. Staging usually has to do with size of tumor and whether it has spread. Like Mags said, her tumor was large too and she is Stage 3. Usually IV means it is in the bones, organs, etc. You may be really dealing with someone who does not know what they are doing. They exist in every field of medicine.
There are known cases of over treatment of BC as Mags has shared. I think they have gotten better at not over treating women, and usually things like positive noded or HER 2 status are the ones they save it for. It may be driven more by a doctors need to limit his liability to throw everything at something vs. doing the required treatment. My doctors were very much about doing the appropriate treatment and we did discuss chemo at one point, but it was not recommended for my situation. Their thinking was "you may need that later if this stuff comes back, which you have a low risk around anyways."
Did you have an Oncotype score done by any chance? They usually do those on node negative women to see if their genetics suggest whether chemo would be beneficial. I had them done and it was determined I did not need it. That can sometimes give you good info on your risks for the future, especially around the distant reoccurrence. They usually do this on a specimen of the tumor after surgery so if it was not done, I doubt they can do it now, but you can always ask.
I think your husband should go with you to the next apt. Always good to have someone with you when you can at the stressful doctors apts to help ask questions or write things down. Start writing down all your questions to bring to the next apt. This is your life and your health after all.
I agreed with Teka you still need a second opinion too.
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Never got an Oncotype score. MO says everytime I go "Your numbers are good". Never shows me anything. I wouldn't even know what that is if I had any paper work on it.
Hubby did find out that I can get a second opinion and the insurance will pay for it.
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you need a different Onco Mommy.........
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Mags I hope u'r feeling better.
OK MOmmy votes are in --get rid of that Dr. Can u call u'r Primary and sy u are not happy t all about how this is happening and u want another dr. maybe out of the group she's in and need to get this 2nd opinion.Nothing is making sense to me at all. I've never hear of not checking nodes for fear of LE, This is crazy to me and I know not much if everyone remembers. So don't wait call right away, Plenty of people end up going to different Drs. than they start with.
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I am sorry I am failing at supporting you all but I am on the edge and unravelling..............in floods of tears everywhere.......................
Mommy you need an Onc you can trust a bit at least, you have no faith in this one so get rid...........even if she is a good Onc she is a lousy communicator and you need to be on the same page with someone as important as an Oncologist
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Jazzy, thanks for thinking of me. I am enjoying the Debra Messing show. She does a very good job of portraying a feminine, strong, woman detective marching to her own tune. It sounds like your networking is paying off ... I am anxious to hear about the city job possibility. Today I had coffee with a friend I had not seen in ages ... Great reminiscing (so ?) and some fun laughs.
Mags ... Hoping the chemo side effects wear off quickly.
Blondie ... (((Hugs)))
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I was way behind, so my last post refers to posts on the last page. Also, from the last page, M0, I hope your DH can get the doc to give straight, understandable answers. Another also, happy to hear that your insurance will pay for a second opinion as it gives you another option.
Lily, sorry to hear that you are down ... thinking of you.
Hi Cami and Onco. Cami, how is Joey these days?
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Teka, thanks for the giggle ... Frostbite!
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Hi hermits- busy day but some cool things afoot. More on that later.
Mommy, in addition to a second opinion, can get you get a copy of your medical records from the office before you go into see him or for your second opinion. I have bits and pieces of mine from my pathology report to my genetics test results, etc. but did request a full copy once around an issue I had with a bad gyn experience (got a second opinion and found a better doctor too). Sometimes my breast surgeon is not good at sharing, but my MO and PCP always give me copies of labs and other tests readily and explain them to me. But there is way more in there, like the doctors progress notes, etc. which if you are lucky enough to be able to read, will tell you more. Most organizations are on electronic medical records these days, and I happen to know Yale is based on some of my with the last vendor project I worked on. You can request this at any time and usually there is a small processing fee for copying and you can either have them mailed to you or go pick them up.
Lili- I am sorry you are having a hard day. What can we do to help? I like knowing you are here with us, sharing as you need to, and glad you are part of our little community. No need to apologize for anything ever. We know things are hard for you as they are for all women going through this crud.
I need to catch up on a few things but will tell you more tomorrow, about my meeting with the city today. It was a good conversation on several levels. I also have a call in the am with a firm I met last week out of London (that's right, over the pond!)
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Hubby said that he is definately going to my next appointment with onco. He has had it with her and he is going to hit her with lots of questions and if she changes her story, he's going to tell her that was not what she said the last time he had been with me at an appointment and now he wants the truth!
On a better note, today I see my BS. She is so cool!
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Mommy- starting writing those questions down so you have them before you go. I hope your visit with the BS goes well today.
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Good morning hermits. I hope you have a good day...
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he he he, love the cartoons! Happy Halloween all.
Gettin a tx of cancer killah right now. Had a danish for breakfast, yum! After chemo, goin home to rest and do absolutely nuthin. Wish I felt more festive but meh, whatevah. DH is a diamond...he did not sleep well, and refused to let me come to chemo alone despite that! So i am grateful once again for him.
Have a great Friday Hermies!
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Already putting questions on paper.
Well I was gonna do laundry today but with arthritis acting up because of bad weather coming, that's been pushed back to tommorrow
I always enjoy seeing the BS. She's great and always makes me laugh. Don't forsee any problems with this check-up. She made me smile the last time I was there when she told me I no longer need to have the dreaded mammo because of the surgery!
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Bippy- sorry you are not feeling well. I was in the middle of things in 2012 when Halloween came and went and wanted no part of it. I did some things last year, but opting out of it this year. Hermits may not be into this holiday really.
Mommy- sorry about the arthritis and hope your weather passes and you feel better. You sound positive about your BS visit.
Blondie and Cami- are you guys doing okay?
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Thnx Jazzy! I'll feel better when the rain finally starts or I either put linament on the area that is hurting or I lay on a heating pad!
Week is ending better than it started. Just got my Cervical Cancer test results and they were normal!
Woo hoo! Happy Dance!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
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Great news, M0!
So here was my morning:
DH put up a gate thingy behind our new pit group to keep the cat from using it to sharpen her claws. I'm walking back to the kitchen from the back door after letting the dogs out, and my foot catches the edge of the gate. Down I go, landing on my better knee and bad elbow. Cat takes of like a flash, cousin comes running, "I'm calling an ambulance!" "No, I'm ok!" She helps me up, I'm really ok but I have a "mouse" on my knee and I'm definitely limping.
Fast forward an hour or so, she's feeding the animals before she goes to church to help out. Can't find the cat anywhere. She's so skittish (the cat, not the cousin) that when she took off when I fell, she could have gone anywhere. Finally found her the second time we looked under my bed. By now I'm really limping.
Fast forward, cousin finishes getting ready and heads off. Minutes later, she's back – she has a flat tire.
Can I take a mulligan? Or maybe a Vicodin? Ok just ice.
P.S. So I go to post this, "your iPad is not connected to the internet." I'm not even going to ask what next.
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