I’m sure some of you are purposely coming to the blog today to find out what the doctor ended up telling me.
If you’ve been following along on the blog you likely know that all this week, I’ve been prepping for test at the Mayo Clinic. It’s gone a little like this…(note the trip to Rochester is 2 hours there…2 hours back)
Monday-drive to Rochester blood test-get a shot
Tuesday-drive to Rochester get a shot
Wednesday-drive to Rochester get a shot-get a neck ultrasound-drink test dose of Radioactive Iodine.
Thursday-drive to Rochester (arrive at 7am)-blood work-full body scan-see doctor
All of this and the diet I was doing was in prep to have the full body scan done. This is suppose to find where my cancer is but in the past, it has shown nothing…so I haven’t been treated. This time around, I’m hoping to be treated.
I’ve taken a picture of myself everyday that I’ve gone…
Monday:
Tuesday:
Protocol at the clinic isn’t too bad. Everyday I go I get asked all the covid questions and then get a sticker that says the day on it. Then I can move freely through the clinic going from appointment to appointment.
Wednesday:
Thursday:
This picture is dark. 
It was early when I heard to Rochester this morning. 4:56am and I was on the road.
I was trying to have a good attitude about it all. I was trying to be hopeful that this time, something will actually happen and I don’t be sent home to “grow more cancer” for another 3 months which has been what happened in the past…so here’s what happened:
I had my blood draw. I went for the full body scan. That went fine. It was much longer than previous ones. I was in two different machines for double the amount of time. I’ve done PET, CT scans and full body scans enough now that they don’t freak me out. They are just part of my routine anymore.
After that it was time to go up and wait to see my doctor. Somehow, unknown to me, I’ve lost 27 pounds since I was seen in 2019. I thought I had lost some but didn’t know. I didn’t try. I just don’t cook like I used to. Between Kramer dying and the childcare kids not being here, I just don’t eat that much. That was the good news of the day.
The rest of the news. Lets just say it was frustrating to say the least.
I got called back to the doctor’s office. She was talking with me and was just going to tell me what the results of my scan were when her pager went off. She read the message, told me she had to go and excused herself. There was this image of me on the computer screen that she was just going to tell me about when the pager went off so that’s what I ended up having to do, look at that image, until she returned. Hmm. What did that image mean? By the time 15 minutes had passed I was sure my cancer was in my liver and back in my neck. I couldn’t figure out what that image meant…it for sure had to mean cancer.
The doctor finally came back. In all seriousness, it was at least 15 minutes. My doctor laughed, apologized and said she went into the wrong patient room. The other patient had been there longer than me. UGH. Not funny…and the appointment went downhill from there.
If you’re a long time blog reader, you know that this doctor isn’t my favorite. I had a long talk with myself before I saw her that I had to give her the benefit of the doubt. I had to be open minded. Well I quickly was reminded of why I don’t like her. ZERO bedside manner.
Long story short. They are not treating me. They found no cancer. She assured me it’s there, they just still can’t find it. She told me she will not blindly treat me.
In the process of telling me all of this she really ticked me. She kept talking about this “node” that was in my right lung. She kept telling me that we have to watch this “node” and it likely is the cause of the cancer. Then I asked her to go back and look at my original scan. There were nodes back then that she had thought were the cancer. Those nodes disappeared. I told her in the next scan a different node was found and that it too had disappeared. She didn’t listen. Then she berated me for not having the scans that I had not had from Lacrosse sent to Rochester for them to compare them. She had the report from Lacrosse but not the actual scan so they “couldn’t compare them”. That was so confusing to me. I was told there was nothing on the scans from Lacrosse and that’s what the report said too. This doctor read it to me. I asked her how can you compare nothing to nothing as that is what you would be doing if you compared two scans that both had nothing on them….right???
I ended up asking her if they took someone off the street and did a scan on them, would they likely have a “node” in their lungs? She said- oh yes, that’s very common. She went on to say they are mostly benign and that people have benign nodes all the time and that they can just disappear. (Wasn’t that the point I was making?) She didn’t understand that was my point. She continued to go on and on about this node of mine and it was the likely source. UGH.
By the time I was out of the office, I was in tears. She is a terrible doctor…Not because she didn’t treat me…because she doesn’t answer my questions. She told me not to be worried that my number is now 117 (yep is was 88 a month ago)…be worried that it’s going up. I told her yes…I understand that. BUT the number has gone up EVERY SINGLE TIME I’VE HAD THE TEST DONE. I said to her that she was obviously worried about that number or she wouldn’t have me coming back to the doctor every three months. I said if you weren’t worried, you’d have me come back every six months or every year. Obviously it’s concerning to her if she is wanting me back. She poo-pooed all of that. Talking to her was like trying to get an answer to a question that you ask a politician. She NEVER answered them. She just rounded around every question with no real answer.
After I started crying she stepped out of the room, came back and said she would offer me a consult with oncology. She said that would happen in 3 months when I came back for my next round of tests. I balked at that. I said I wanted to be seen sooner. She said well there was an opening on July 6th. I said I’d take it.
Apparently oncology can offer a dose of something that can help these undetected cancers show up when scans are done. Well yes I want to be referred to them. Who wants cancer growing in them?? Who wants their life to be drug out like this with continual scans. Not me. If there is anything that might help, of course I want to do that.
I was also berated for going back to my doctor in Lacrosse. I did that when Kramer was mid-cancer treatment and dying. I couldn’t be in both places at once. I told her that. She didn’t even say she was sorry I went through that. She just said that if I didn’t want all this confusion I should stay with Mayo Clinic. UGH.
So this is my plan. I am going to the oncology appointment on July 7th (I got a call and indeed the appointment got changed to the 7th). In the meantime, I am also going to ask to be transferred to a different endocrinologist. This whole cancer thing is a lot and having a doctor that I do not care for makes it all the worse. Feeling like she doesn’t listen and won’t actually answer my questions makes it all even harder. No one needs that.
I ended up hitting up John Hardy’s on the way home. It’s my favorite restaurant in town.
Although I don’t love the plan, I’m okay with what happened. We have a plan (although it’s just a plan to wait) and that’s always what is most comforting to me. Thank you so much to all of you who have sent prayers on my behalf, sent good vibes, sent me a gift card for gas, or just dropped me a note to say your were thinking of me. I so appreciate it. This all is really annoying but having a good team backing me means the world to me. THANKS.
the vest outcome from this is your requesting another endo dr. So sorry this is so frustrating for you.
Sounds like my husbands experience with Mayo,Phoenix. Lots of test for a brain tumor, dr. Would not even look him in the eye. Said nothing we can do for you. Sent us home. Well that was 30 years ago and he is still here. Dr at Barrows neurologist ,said ill give it a try. Removed the tumor. Praying you find the right doctor.
Wish you had gotten some answers! Definitely get another doctor! The relationship with a doctor you can talk to us so important! My gynecologist of 30 years retired and I got a young woman who sounds like your doctor; cold and no bedside manner! I found another doctor who I just love.
Try to find out who that Dr.’s boss is and put in a compliant. I had to do that on a doctor I had to see. Boy did he have a different attitude the next time I seen him. You DO NOT have to put up with treatment from her. Go to a different doctor-someone you can trust.
You did a great job of advocating for yourself. We are partners with the medical providers in our journeys to wellness. Dealing with this kind of doctor is so difficult, answers are so important.
I don’t know where the “Your comment is awaiting moderation” came from. Sorry
Oh, Jo, I have had a few run. Ins with Dr.s like that your best option their is to file a complaimt and ask for a different Dr. It is such a horrid thing to have someone great you like a child who doesn’t know what they’re talking about. Her callous attitude says to me she should be in a different business altogether. Praying for you in Jesus name to be healed.
Oh Jo I’m so sorry you have such a crappy Endocrinologist, the ones I have seen here in the U.K. have always been so lovely
I’m so glad you are asking for a different doctor!! There is nothing worse than a doctor who won’t listen to their patients and answer their questions! She needs to be taught how to listen and actually hear what people are asking! Ugh!!!!! Make sure whoever is over her knows why you are leaving that doctor, because that is something she needs to change. Will keep praying!
It was most likely just a typo but confirm your next appointment date! If you’re anything like me, if I get confused on something like that, it’s hard to get back on track (and stay there!) with the correct day of the week or date. No criticism meant at all, I just know that would throw me for a loop and I’d be questioning myself up until the actual date. I hope you get a new doctor that will communicate with you and answer your questions.
contact the patients advocate and report that dr. I had a bad endocrinologist and reported him. He left the practice. i am not sure why, but he was not very professional. YOu have rights. And you need a caring dr when there is so much unknown.
You must be so upset…I don’t blame you…sounds like your numbers are alarming. Go to this oncologist and see if any plan. Never go to a Dr. that is a p i a. Definitely report your experience to patient advocate. We must advocate for ourselves in the medical system. Ask one of your daughters to help you do some online research and keep on looking for answers. While your weight loss is awesome, it too could be a symptom.
I am so sorry to hear that your doctor has the bedside manner of a log…maybe less. I’m glad you are looking for another doctor. Will be keeping you in my thoughts and prayers.
Much love and many prayers
Jo -.please please go see the oncologist. Another endocrinologist is needed for sure, but you need to see an oncologist. My DDH (Dearest Departed Husband) went through a similar situation in the seven years prior to his death. He insisted on staying with the specialist and having the treatments (surgery, radiation, etc.) recommend. I finally persuaded him to see an oncologist and we got an entirely different perspective on the cancer and possible treatments. Too late to make a significant difference but with more understanding of what we were facing we were able to make better decisions.
DDH didn’t understand that his urologist was trained in cancer treatments that could be done with the techniques a urologist knows while an oncologist is trained in all the possible ways a type of cancer can be treated. After our visits with the oncologist, we promised each other that anytime our doctors mentioned cancer, the next thing to do is see an oncologist.
So, humor me – see the oncologist.
I’m sure you were expecting better treatment from your visits. That Dr. needs to be put in her place. Let someone know what went on. That’s not acceptable. So sorry you had to go through that. I hope your visit in July will have more answers. Continued prayers and hugs to you.
Sorry you had to go through all this and by yourself. It is good you asked for a new MD and a quicker appointment. Maybe the next time you have back to back appointment you can ask if they have housing or a good deal with hotel so you don’t have do all the driving. I am sure that did not help any.
You very definitely need a new doctor. I had that same experience, mine told me I was depressed and needed medication when I was seriously hypothyroid. I’m sorry this is happening to you- no one deserves these horrid doctors. It’s truly terrible and demoralizing!
I can’t imagine how frustrating this is for you and your family. I pray you get some answers at your next appointment and find a doctor who cares.
Oh, Jo – I’m so sorry that you didn’t get answers and that your doctor stinks. Ugh – so frustrating. I had really hoped you would have a better outcome this week. Hopefully they can get you with a new doctor that you like – that is so important. Thinking of you.
The doctor is your hired help–you pay her, so you should be the boss–I just wish she realized that. If you chose not to “listen” to your bill for services, I’m sure someone would notice pretty quickly! I think your decision to see the oncologist is a good one–hang in there.
I’m sorry you had such a frustrating appointment with this doctor and no answers. I hope your next doctor is more helpful. If possible maybe you can call the other facility and see if they could send the images to Mayo before your oncology appointment. I never understand when they only send the report and no image as that is not as helpful.
Well how depressing is that? I am so glad you feel well though. I wish I had half of your energy. Thanks for keeping us in the loop and pray you get answers and a new Dr. What a road you are traveling. Just know that we care and are praying for you and your family.
Don’t you wish sometimes you could just smack the doctor. I’ve seen A LOT of doctors in my 65 years and specialists are the absolute worst at patient care. If it is any consolation, my dad had prostate cancer and the resulting surgery. Afterwards they expected his numbers to go down. They went up, and continued to do so for years. As his Alzheimer’s got worse I quit even getting the checkups as all they did was stress us both to the max. He had his surgery in the late 1980’s and died (of Alzheimer’s) last year. Never did have cancer again.
Ok, I’m ready to scream at that useless doctor. What a creep! She should be reported to the Board of Medicine in Minnesota. I would be in tears too. I’m so sorry to hear you are going through this. And the worries about Gannon also. I pray and pray for your family. God bless you all.
How frustrating for you! I’m glad you’re standing up for yourself and insisting on a new Doc. No one deserves to be treated like this :-( Empathy and social skills are imperative.
Take good care and enjoy these next few weeks with your family :-)
Dear Jo, You are so right about changing doctors. A good doctor explains what is going on and why they think it is happening. They answer your questions, because they are important to you, or you wouldn’t ask them. Hopefully the oncologist is a much better fit with you. Blessings and prayers. Cathy
Good move on requesting a new doctor, and requesting an oncologist. About the scans and lung nodules – it was explained to me that the scans look at slices about 1/4 inch apart (I don’t recall if is all scans or just certain type of scans). So if something is less than 1/4 inch in size, unless you are positioned exactly the same for each scan, nodules can seem to disappear and appear over time. They are still there, just not showing on that particular scan. The doctor also stressed that almost everyone has some lung nodules, especially if you grew up in dusty areas, and I’d say farm life definitely qualifies.
27 lbs is huge! The doctor, well she needs some help. All I can say is that this is good news for you. Maybe you just have fluke tests where the numbers go up but they dont actually mean anything. Hoping for that. I understand the doctor thing. There are good ones and then, well, not so good. Hugs!
Everything you said to her was so well put and succinct. I’m impressed with the specifics you have on the how and when of recent events and ability to question what she’s saying. I’m so glad you’re getting a new endocrinologist! She just doesn’t seem to know what she’s doing except, sadly, using your high numbers to get a lot of followup tests and appointments. Yes, I’m going there, not in a mean way, but the facts support it and it does happen.
You definitely need to see a different doctor. Some doctors seem to have a much higher regard for themselves than for their patients. In the seventies, my Grandmother reminded me that we don’t work for the doctors, they work for us. My husband at the time was going through testing to see if he had a brain tumor. He did, and the advice of Grandma stayed with me. I was his advocate and “boss” to the doctors. It was surprising that since I asked questions, expected clear answers and wouldn’t take no for an answer, how much more they did for him. I was only 30 when all this happened but I was fighting for his care and I wouldn’t back down. I’m in my 70’s now and still hold doctors on an even status. Their bank account might be bigger, but they are no better than me. Fight for yourself Jo. You deserve it.
Dear Jo,
Am so very sorry this was such an awful day for you. You’ve done all you needed to do on your end, and then to be treated so shabbily. I’m very much in agreement with all the other ladies comments. See Oncology, but before you do that, report that doctor. She needs to be jerked up short and taught how to listen. Unfortunately, have had incidents like this while treating my husbands brain cancer, and I raised a stink and reported callous doctors and their terrible bedside manner. It got results. I continue to pray for you, and wish you the very best!!
YES you need a new DR! YES for advocating for getting in sooner! and WO HOO on the wt loss!!!!! It’s a damn shame that you had to get emotional and crying before you would be given an other opinion!!! If I lived up there I would go with you……
I too have nodes on my lungs, probably just from my frequent lung infections, but they scan me every yr. old one go away, new ones show up….. there is also a new cancer biopsy in Cincinnati for lung nodes that in the past have been too small to biopsy.
Oh Jo I’m so sorry that your doctor has been so difficult to deal with. Listening is obviously not her strong suit. I’m so glad that you have requested another doctor to be assigned to your case. I’m glad that you are going on the 7th.
How frustrating for you.
I don’t know what to add that hasn’t already been said. Just prayers to you for all you are going through. I hope your new doctor will pay attention to you and not just your scans and blood work.
As other people have said…that Dr needs help more than you.
A favorite meal was a good choice. Hopefully some thrift shops on the way home too?
Keep thinking positively. There is a bright side some where. You can make Scottys birthday and be around your kids and grandkids. No worry about iodine treatments.
As my provincial Dr says, “keep calm, stay safe and show kindness”. (Or something like that)
Love reading your blog. You are so real. Blessings…
Sorry to hear all that you went through. You did so well advocating for yourself. Prayers for peace of heart and mind as you go through this unsettling time.
Jo, I am so sorry you are going through all of this. I don’t know how you have done all of what you have accomplished this last year with Kramer’s death and your health problems. You are an amazing and strong lady. I love your blogs, your sharing things with all of us and your heart of gold for everyone who you come across. Take care of yourself. Stay strong with your Doctors. This is your life and you are the one in control of it. Hugs and prayers for you and your family.
Julie
So thankful you are a strong person, you were terribly mistreated. I used to live in Rochester and worked for Mayo, but just before I moved away I had a couple of instances in which I should have contacted two different employees’ supervisors. Both talked to me very snottily. That doctor needs to be reported. Some highly intelligent doctors (and others), just don’t have compassion and she is one of them. She doesn’t even sound like she was just having a bad day. You will continue to be in my thoughts and prayers.
the way I see it they are making big bucks off of you at your expense, which is so wrong of them. I would not travel that far, with worries and be treated like that. Report her and ask for a new Doctor. Good Luck on your next visit. Prayers for great report
I’m with you, Jo. Fire that Dr. Having to deal with someone who won’t answer your questions and berates you for not sticking with Mayo isn’t what you need in your life. It almost sounds like she just wants to keep you coming back. Time for a little Dr. shopping. Get some recommendations from patients who go elsewhere. I’ve heard enough about Mayo over the years to not believe they are the be all and end all of treatment. Maybe once, but not any more. Good luck in your search for a Dr. you can work with, you shouldn’t have to leave the clinic in tears, without finding out a thing. That is just unacceptable.
So frustrating for the doctor to not listen or hear your concerns. No one knows the patient like the patient! And you, having been through this several times, have more knowledge than if this was your first visit.
Bedside manner is so important and so many doctors don’t have it or don’t use it. I’m glad you are requesting and seeing both an oncologist and a different endocrinologist. You are the best advocate for yourself.
It’s exhausting to drive back and forth for four days in a row! I would think they could combine some of those visits.
Continuing to pray for you.
I’m so sorry you have been put in a holding pattern once again! The behavior of this doctor is unforgivable. She may be brilliant in some ways but she must be able to communicate.
One good thing is you can go to Scottie’s birthday now!
I am so glad that you are getting other opinions and another Dr. Never stay with a Dr that your are not comfortable with and will not answer your questions. I was told that by another Dr. She told me that it is too hard to have to go to a Doctor in the first place to be seen by one that you are not happy with. If they don’t seem to be taking you concerns seriously then you need to seek someone who will. Some doctors are great doctors in some areas just not with patients. I hope that you get the answers that you need and the treatments that you need. Prayers and love to you and your family
Kudos to you for asking questions and trying to get the doc to explain and see your point. Must self-advocate and stand firm. Asking for a different doc may make all the difference in the world, both physically and mentally. Praying the good Lord watches over you and gives you the strength and courage needed!
I am so sorry that you went through all this and did not get any answers. I’m a retired nurse so I don’t take poo from doctors. Find someone who treats you properly, answers your questions and acts like he or she cares about your outcome. You deserve better. I really hope your appointment with the oncologist gives you a plan and some answers. If not, go elsewhere.
I am so glad that you asked to be transferred. Your current Doctor sounds like a real piece of work. Nobody should put up with that bull——. I hope you get a really good one next time
I have (May be HAD very soon) a pulmonologist (lung dr) who, after 25 years decided to yell at me that I didn’t have athsma or COPD I was just FAT. I am overweight but not as much as some of his patients. When I started seeing him I was 105 lbs. He then told me to go home and lose 50 lbs and come back all slim and trim and shapely for him. FOR HIM! So I don’t know if I have asthma or not. Or COPD.
That is only one of several incidents with doctors I refuse to see again. I am so sorry you have had to go through this. The oncologist will be able to give you more info on what is going on with the cancer markers I am sure. Good luck and I will be praying all goes well and will be waiting to hear what happens on the 7th.
I have only a few words to say. Mayo is touted as a fabulous medical system and hospital. I know at least 3 people who had negative experiences and were misdiagnosed.
At the least, I would ask for a second opinion, but since you are frustrated with her, I’d get another doctor. There is no reason to be treated like that. And one can’t say she’s having a bad day as it’s happened before. Prayers being said for you that a resolution is laid forth. Blessings, Jo.