I Don't Know What To Think Of My Oncology Appointment-Need Opinions

hopeful girl 1

Northwoodsgirl said:

Get a second opinion at Mayo
Pat, please get a second opinion at Mayo. Most insurers pay for the second opinion. There are really good gyn-oncs out there. You are the consumer and you have the right to be empowered with as much information as possible to make an informed decision. You have a million questions as we all did and somedays still do depending on where we are in our journey. Take back your power!
Lori

Scans
I have a very reputable gyno-sugeon-oncologist and he primarily follows CA125 (if it is a good marker for the patient-which in my case it is) as well as exams, and symptoms.

He will do a scan if CA125 goes up. He is not a big believe in scans because he does not believe in exposing his patients to extra radiation if not needed.

Cindy

Pat51

Kaleena said:

Pat:
Sorry to hear about
Pat:

Sorry to hear about your severe reaction to taxotere. I also had a severe reaction to taxol. They had to change my chemo and I ended up getting Carbo/Gemzar.

It was great they were able to stablize you. Sometimes a reaction is due to how fast they pump it in or they need to reduce the dosage.

You may feel really tired two days out from your chemo. It is only natural. Just rest.

My best to you!

(((hugs)))

Kathy

Kaleena
Since this is my first chemo treatment it is a learning experience for me. The bone pain started about 24 hours after the Neulasta shot. Extra Strength Tylenol did not even touch the pain. I was extremely tired today. I am extremely fatigued with only the slightest activity. It is good to know that these are normal reactions.

Pat

Pat51

hopeful girl 1 said:

Scans
I have a very reputable gyno-sugeon-oncologist and he primarily follows CA125 (if it is a good marker for the patient-which in my case it is) as well as exams, and symptoms.

He will do a scan if CA125 goes up. He is not a big believe in scans because he does not believe in exposing his patients to extra radiation if not needed.

Cindy

hopeful girl 1
The oncologist that I am seeing now says that he uses CA125 as a good marker of problems. My CA125 was 22.2 before surgery, I have not found out what it was after surgery. I have a doctors appointment and blood work on Thursday, hopefully I will find out something then.

Pat

Pat51

Ro10 said:

Pat sorry you had a reaction
I too had a reaction to Taxol with my first treatment. And then I had a reaction to Carboplatin with my second treatment. I am able to get both drugs, but at a much slower rate than most people can take it. My taxol goes over 5-6 hours and the Carbo did go over 2 hours. Now that I am past the 6 doses of Carbo it goes over 3 hours. So my chemo days are very long, but I am thankful I can get the Taxol/Carb as that is the "gold standard" treatment for UPSC.

I read where is you take Claritin (can use over the counter version) before your Neulasta shots and several days after your shot, it will cut down on the achiness. I felt it did help me when I took it before my 6th chemo. I have not needed Neulasta with this round of chemo treatments.

Wishing you the best for your next treatments. In peace and caring.

Ro10
I had not heard or read about the Claritin before, but I will be asking if it is okay to try it with the next Neulasta shot. The achiness is terrible and the extra strength Tylenol does not begin to even touch the pain. So far the reaction to Neulasta was worse than the reaction to chemo.

Thanks for the tips...they are appreciated.

Pat

RoseyR

Communicating with our Oncologists

Dear Pat,

While competence is the chief trait we seek in an oncologist, we also need someone we can communicate with; we may be under treatment for several years so need to feel that, while respecting doctors' time, we can also raise important questions.

Am grappling with this problem to such an extent that am considering changing instiutions for my own treatment.
Under care at a prestigious urban cancer center since September, I don't doubt the competence of my team. My radiological oncologist is lovely, even giving me her email address. But my surgeon/oncologist, in five months of care, has yet to sit down with me for even a half-hour face to face consultation. Appointments occur right before chemo; a one-minute pelvic exam is followed by 'Do you have any questions?" as she paces about the room, giving the impression that she is merely in a hurry. Just three times since September have I asked her secretary to forward her an email about an important question. She never answers but just forward my questions to the chemo nurse, who phones with adequate, or inadequate, responses.

I now realize that I have sought several opinions on my treatment less from the need for more OPINIONS, per se than the EXPLANATIONS I receive from other oncs on the pro's and con's of varying treatment options.

Two oncologists at nearby institutions who gave me second opinions spent 40 minutes with me in a sitdown consultation--more time, ironically, than I've ever received from her.

Is it unreasonable to hope for a treatment style that considers me something of a participant, rather than passive complier, in treatment decisions? The chemo nurse (who has to field so many questions!) recently sighed that she wished I wouldn't do so much of my own research ("it just makes you nervous") and that I would "just trust that we want the best for you." I find this incredibly condescending. I have not expressed even tacit criticism of anyone treating me, but would she want her OWN daughter, diagnosed with a serious disease, not to do any of her own research or raise vital questions? (No I am not a physician, but were it not for my own online research, by the way, my own tumor would have been diagnosed a year earlier than it was!) We women need to be highly proactive, in my opinion, to be sure we are being treated with CARE.

It's easy to get to my highly rated treatment center and I like and trust my radiological oncologist, so hate to change course in midstream. But am feeling frustrated. Am I being too critical, expecting too much? Have any had similar experiences?

Thanks for any input,

Rosey R

Ro10

Pat51 said:

Ro10
I had not heard or read about the Claritin before, but I will be asking if it is okay to try it with the next Neulasta shot. The achiness is terrible and the extra strength Tylenol does not begin to even touch the pain. So far the reaction to Neulasta was worse than the reaction to chemo.

Thanks for the tips...they are appreciated.

Pat

Pat have you asked for a stronger pain med?
If you only have Tyelonal Extra Strength for pain, I think you need to ask for something stronger. I had some Oxycodone from my port being inserted, so I took some of that and it helped.

My onocologist had not heard of taking Claritin either. She said it would not hurt me, so she was okay with me taking it. It did reduce the post Neulasta pain significantly. Hope it works for you, too. Luckily I have not needed the Neulasta with this round of chemo. It was after radiation that I had trouble with my last 3 chemos.

Good luck with your next treatment. In peace and caring.

Harrber

RoseyR said:

Communicating with our Oncologists

Dear Pat,

While competence is the chief trait we seek in an oncologist, we also need someone we can communicate with; we may be under treatment for several years so need to feel that, while respecting doctors' time, we can also raise important questions.

Am grappling with this problem to such an extent that am considering changing instiutions for my own treatment.
Under care at a prestigious urban cancer center since September, I don't doubt the competence of my team. My radiological oncologist is lovely, even giving me her email address. But my surgeon/oncologist, in five months of care, has yet to sit down with me for even a half-hour face to face consultation. Appointments occur right before chemo; a one-minute pelvic exam is followed by 'Do you have any questions?" as she paces about the room, giving the impression that she is merely in a hurry. Just three times since September have I asked her secretary to forward her an email about an important question. She never answers but just forward my questions to the chemo nurse, who phones with adequate, or inadequate, responses.

I now realize that I have sought several opinions on my treatment less from the need for more OPINIONS, per se than the EXPLANATIONS I receive from other oncs on the pro's and con's of varying treatment options.

Two oncologists at nearby institutions who gave me second opinions spent 40 minutes with me in a sitdown consultation--more time, ironically, than I've ever received from her.

Is it unreasonable to hope for a treatment style that considers me something of a participant, rather than passive complier, in treatment decisions? The chemo nurse (who has to field so many questions!) recently sighed that she wished I wouldn't do so much of my own research ("it just makes you nervous") and that I would "just trust that we want the best for you." I find this incredibly condescending. I have not expressed even tacit criticism of anyone treating me, but would she want her OWN daughter, diagnosed with a serious disease, not to do any of her own research or raise vital questions? (No I am not a physician, but were it not for my own online research, by the way, my own tumor would have been diagnosed a year earlier than it was!) We women need to be highly proactive, in my opinion, to be sure we are being treated with CARE.

It's easy to get to my highly rated treatment center and I like and trust my radiological oncologist, so hate to change course in midstream. But am feeling frustrated. Am I being too critical, expecting too much? Have any had similar experiences?

Thanks for any input,

Rosey R

Doctor Patient relationships
As a patient and also as a psychologist who has worked in oncology for many years - it is very disturbing to hear about your experience with your doctor - and nurse (usually the nurses are somewhat better )
There is so much research that indicates that the better the communication and relationship between a doctor and patient, the better the "outcomes" - not necessarily in terms of disease, but in terms of satisfaction and adherence to treatment as well as general quality of life. Being a partner with your medical team is so important - not that you need to or can ever know what they know medically - but that you are included in decision making, educated about your situation and generally feel that you are part of the team - since you are! Med schools are trying to train docs in communication and patient relationships but it has not made nearly enough of a dent - and of course there will always be doctors who are not interested in their relationship with their patient or the psychosocial issues a patient has concerns about.
If it is at all possible, I wonder if you could have a frank discussion with your team - sharing that you feel a bit condescended to, that you do best with information and understanding your disease and the treatments, and that it is very important to you that you be a part of the conversation - You can ask, if you want to do your own research, what does he suggest (always go to sites that end in edu, org or gov (although not all the org - non-profit sites are realiable.) - that way indicating that you respect him and would appreciate his guidance in this.
You need to navigate this in the way that works for YOU - and it is okay to ask questions and also expect to be treated with respect - And if there are other gyn/onc where you live, you can also consider a change of doctor if the relationship is not working for you and only making you more anxious or feel badly about yourself - that is the last thing you need - but if you do not have other options, it is worth a try to speak up - too often we don't say anything and without feedback, doctors can't know the impact of what they say - good luck with this

upsofloating

Pat51 said:

Ro10
I had not heard or read about the Claritin before, but I will be asking if it is okay to try it with the next Neulasta shot. The achiness is terrible and the extra strength Tylenol does not begin to even touch the pain. So far the reaction to Neulasta was worse than the reaction to chemo.

Thanks for the tips...they are appreciated.

Pat

Pat, i am surprised you are
Pat, i am surprised you are getting Neulasta this early in chemo protocol unless you already had blood count issues. It is usually only given if it appears your bone marrow is not bouncing back fast enough to maintain treatment protocol. In first round I did not have low counts, but after a poorly drawn blood sample was extremely low, followed by a normal count the next day, Dr rec'd Neulasta 'just to be sure' I kept on schedule. If it is not necessary it would save you the discomfort -- i did find it worse than chemo side effects for the two cycles I received it.
On another note, i am glad your chemo is underway so hopefully you are on your way to a longterm affair with NED :-)
Annie