The dumbest things people have said to you/about you
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Barb, interesting but I work on what my docs said to me, you seem very upset about how I list my diagnosis? not sure why
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Really stressed-out over this one - I will be writing on another thread, but had to post it on this one, too. I had a lumpectomy last Sept. The incision healed perfectly. I had no post-op problems. I went to my Onc PNP this week as I have had severe arm pain for 3 months and peau d'orange on underside of lumpectomy breast. I have also had swollen nodes in chest and underarm and a lot of breast pain (surgery side).
My PNP is concerned - she ordered a tumor-marker test, sonogram and bone scan. I am currently waiting for tumor-marker test results. I had my sonogram today - the tech advised me that she saw nothing unusual in the peau d'organ area - then, as she continued scanning, she became very quiet and intense about scanning. She advised me that she wanted to have the Radiologist look at the scan results right away.
I laid on the exam table in the dimly-lit room. The tech left NPR on the computer for me - It just sounded like senseless noise as my head spun with the thought of starting treatment again....The tech finally entered and apologized for the wait. She said she also had to show the radiologist someone else's scan. Great - just leave me in suspense.
That was stressful enough - then she stated that "something is there" and that it "could be something to be concerned about, or maybe not" - Could? Maybe not? She said they would sent the results to my MO to view and that "maybe he would order a mammogram" - Do you think? She sent me on my way and told me to have a nice day.....On my way out she told me it could be a seroma. I just Googled seroma and do not feel that is the case.
Anyway - I just left a message for my Onc PNP and asked her to call me tomorrow to discuss the sonogram. I advised her that I need more than "Could" or "Maybe not"!
Thanks for listening - scared and upset.
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Sorry, Reality - she shouldn't have said anything at all. Then you wouldn't be hanging in an agony of suspense. She probably thought she was being helpful, but that was very cruel.
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Thanks, riley,
She really is a nice person so I believe you are right - she was trying to help. I also agree that saying nothing would have been better. I was actually surprised that she said anything. Thanks for your response. My five-yr-old granddaughter just came over to spend the night, so I am feeling much better.
Thanks again!
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proudtospin, if you are pure DCIS then you are Stage 0. So your brother was right! I'm sure you've read all the discussions on the DCIS threads to understand my concern for you. I have IDC, but to me cancer is cancer. You can't be stage one if you have DCIS. It's impossible. It's against all medical logic. I just hate the DCIS gals being told they don't really have cancer. Sometimes they get the worst treatments like mastectomy and rads, more than other stages and yet they're "only" stage 0??
Reality, that's bullshit about the tech showing someone else's pics to the radiologist! Who would do that in the middle of an appointment!! I've learned that the techs will measure and photograph everything, while a radiologist would come in and blow it away. Why didn't the radiologist come in to see you? Now you have the horrid wait period! Hugs to you.
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Barb, I have never said that I was stage 1. I have always listed myself as Stage 0. That is what my docs called it. I think you misunderstood something. And, no I am not a candidate for donor for transplant surgery for my brother, I asked all 3 of my docs at the time! Actually, they were shocked that I would even ask. DCIS is listed in a vague manner on some hospital sites but unfortunately, I have other health issues, including age~~that make me not a possible donor. It is something that is very personal to me and very upsetting.
I have done all the recommended treatments from surgery, radiation and now the lovely AL. Not fun but doing it! If you think I over did it, well your opinion. I too wonder at some folks here who argue with the docs and refuse treatments. Got one of them as a long time friend who has small amount of DCIS and refused radiation. I just hope it works out for her but to be honest, I offered my opinion at the time of her diagnosis, told her of my expereince and then backed off.
I wish you the best of luck with your cancer treatment.
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WOW!! Did I EVER misunderstand your post!! I swear at one point above you said stage one. I apologize PROFUSELY!!!! I do NOT think you did too much. That was the point of my thread!! DCIS is treated sometimes more aggressively than other cancers (it has to be as it is spread through the ducts and not just a lump!) and yet some people down play it. I am on YOUR side. Trust me!
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OK Barbb, we are pals then! So hard to follow all folks and confusing for sure. I am sensitive regarding my brother and his cancer. He did not find a stem cell donor for his hodgkins and is now in the midst of some sort of "cutting edge", my neice's words, "T cell" treatment. He was in the hospital for 4 weeks (and no playing with the grandkids so that is torture to him~~), now home but no one knows yet if it worked. I am glad that he went from treatment at small local hospital to U of P in Philly which is a top hospital, I figure the better the docs the better his odds.
When my brother first told me of his cancer and mentioned stem cell transplant as the ultimate treatment, it was long before my diagnosis and I was all gung ho to be tested. But timing was off as by the time his cancer had progressed to docs suggesting it, I had already been diagnosed and was finishing up my rads.
Think positive thoughts for my brother, all I ask is that this treatment works.
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proud, your brother is now on my prayer list. What is his name so I can use it as I have a couple other "brothers" on that list?
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Neil is his name, thanks, my family has been hit with the nasty c word far too often
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Oh Proud I'm so sorry for u'r brother and I'm glad u gave us his name--I pray for all of us as a group but I put in a couple of extra names too. There are so many of us, but what really upsets me is the ages of so so many--so young too young--u know what I mean. U'd think with so much research it would be less than it is and it seems more to me than ever. And now more rare cancers too. I'm sorry I don't mean to make our subject worse, it's me today just tired and a wee bit cranky.And I have a taste for chocolate ice cream--lots of it LOL---Does anyone get cravings--I've been getting them of late--this is rediculous. I'm on a beef sandwich kick and I don't like meat---What's happening? Oh well it's really not important
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Maybe this will help me lose weight 0 -
thanks Cam,
good way to burn some calories! I sort of think I can do that myself
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Cam....love it! Have you found a pic of Burnt Bunz! Hahahaha!
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Barbe1958: Just to add, according to this website definition, there is a higher risk of recurrence with DCIS than other types. And there really are no symptoms which is even scarier. But I would hope if you've had it the oncs would do the necessary tests in the future.
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Camille: My DH would gobble that pizza right up. He LOVES them burnt to a crisp like that. Blech!
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shelly, I didn't have DCIS, I had IDC. DCIS is found when the calcifications begin to "line up" or "stage" within the breast ducts. It's fairly easy to spot on a mammo, though dense breasts make anything hard to find!! You can't as easily feel DCIS like you can a mass or lump. I haven't read that it is more prone to recurrence. That's new to me. I'll have to check out the definition.
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shelly, just checked out the info and this is the part I think you are referring to:
When you have had DCIS, you are at higher risk for the cancer coming back or for developing a new breast cancer than a person who has never had breast cancer before. Most recurrences happen within the 5 to 10 years after initial diagnosis. The chances of a recurrence are under 30%.
As you can see, it says "highter risk for cancer coming back.....than a person who has never had breast cancer".
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Hi sorry to hear of ur hb comments. Sounds a bit like mine he actually laughs at me and calls me baldy then gets my wig on and prances around the house with it on! I keep trying to tell myself it's just his way of dealing with it but sometimes it makes me soo angry I want to bash him one! ( on the head) lol😖
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Pinkgirl--I think alot of husbands really don't know how to handle this whole bad trip, so they do the best they can, even when it's silly stupid. I;m sure he means well especially if he's always been a good guy.
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I bet my BS thought I said the "dumbest thing" today - but it was not my fault - I'm just the "middle-man". The radiologist in my local (90 bed hospital), "found something" on a sonogram of my lumpectomy breast. (I posted earlier on this thread that the sono tech was the first to tell me she found something). The Radiologist told the sono tech to tell me to contact my BS as he is not familiar with my breast and doesn't really know what it is (or rather not commit to saying what he thinks it is). When I go to a larger, city hospital with hundreds of beds, the radiologist (woman), ALWAYS speaks with me in person following a sonogram or mammogram. My God - she even took the time to hug me following my post-op mammogram - My local Rad would not even bother walking down the hall to talk to me.
Anyway...results were emailed to my Med Onc. (in the same hospital, but he also works in the city hospital). I called the office to see what he thought - I was referred to BS. So, I called my BS today and explained to her that the Rad and the MO will not talk to me about "what was found". She asked me to tell her exactly what they said - I know it must have sounded like I was making it up. I felt like an idiot.
My BS must have called the Rad or MO because she called me back this afternoon to schedule an appointment.
I'm really concerned as none of my med team has ever kept me in the dark - they have always shared path reports, concerns, their opinions, etc. It is really odd that noone will even begin to speculate on "what they found".
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well I do not think you said anything dumb, fact I would have likely done the same thing!
is always good in my judgement but...since this is the start of a long weekend, best to stay busy and try to keep your mind off of the tests. Go....take a hike!
also,I had a mamo recently that had new junk on it and had to have a biopsy....I told myself the results whould not be in for 7 to 10 days. When the results came in (B9) after only 5 days........much easier on the old head.
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Reality, was it your BS who called or her office. If it was her that called, did you ask her what everyone saw???? Also, I'm not quite sure what you mean when you say you said something dumb. What did you say?
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The worst thing in the USA medical research history was the limits put upon stem cell research. We have the greatest research capabilities of the world, the greatest application skills--yet it could be turned off by one person. Our President. Set us back by years, b/c he had a a belief. Clucik'em. Stem cell research is the future. IT IS THE BEGIINING OF THE END TO DISEASES THAT CAN BE CONTROLLED. Science research should not be controlled or limited by the government----or one person---the second George will go down in history as being really stupid about this one question, not withstanding the war. But his stupidity about limiting scientific research just was stupid
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I have a good one that just happened this morning. Was at the emergency with my 84 year old Mom for 11 hours, got in like 30 minutes ago. This patient starts chatting with me and is telling me all about his motorcycle accident from 3 years ago. Lots of problems including brain injury. He's extremeley nice and very chatty. The nurse comes to tell us that my Mom will soon be on her way home and after 11 hours I'm delighted. He says "Oh are they discharching both of you?" I guess with the uber short hair he figured I was a patient! LOL!
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MLB, sounds like he suffered a "head injury" during his motorcycle accident...
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Reality--call the rad doc's office and get a copy of his report. They cannot refuse to give you a copy of the report. They can charge outrageous prices for printing/copying, but at least you will have the report and can appear in your BS or med onc's office with the report in hand and stay until someone explains it to you. The run around you are getting is not right. If your insurance hasn't already payed for the ultrasound call them and have them hold payment until you get the results. I do this all the time, it's very effective.
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Thanks, Barbe - I felt so dumb telling BS's office assistant that I did not know what was going on with sonogram - I forgot to mention in my post that my med team knows that I am a very informed patient who researches my path reports, mammos, etc. I really feel out-of-the-loop of my own treatment at this point. Things are going to change, though - I just left a message at Oncs office - I will be picking up copies of my recent mammo, arm xray, sono and hopefully the tumor marker results I have been waiting for - for over a week!
My BS and wonderful VT teaching hospital is two hours away, and the trip includes an expensive ferry ride over Lake Champlain- beautiful trip! I was trying to save time and money by going to my local hospital - big mistake. From now on I will put my health care before money and go to my BS.
Thanks, to all for your input and caring.
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proudtospin - Thanks for the great advice - We are having a lovely fall-like day in Northern NY. I live in a small cabin at the base of a lovely Adirondack Mtn. There is a trail just outside my back door - that's where I'm headed very shortly!
thanks
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NativeMaine - Thanks so much for your support and encouragement. You have inspired me to get involved in my healthcare again - I guess I just got tired of always feeling that I had to be in charge of my care - but I truly do. In my humble opinion, we all need to be in charge of our care. Whenever I slack and think, "oh, they are professionals, they know what they are doing", it all seems to fall apart. I even had to correct my Onc the last time I saw him as he did not realize I was triple-negative. (The Her-2 test was done separately and was reported negative on a separate report - my onc scanned my records quickly and missed the 2nd report - duh. His face turned very red when I corrected him - it should have!)
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