I'm so upset with my doctor!

cheyennedawn

It has been well over a month now since my mastectomy, and I have been experiencing shortness of breath, dizzy spells, and feeling very tired. I was dx'd with a malignant phyllodes tumor, and suppossedly did not need follow-up treatment, because all of the tumor was removed and this type doesn't respond to treatment other than surgery. But now, I am concerned because of these other symptoms. I called my doctor this morning to request that he order at least a chest x-ray (I have not had one prev), and his nurse called me back and told me that he would not schedule a scan because of the type of tumor I had, that he didn't feel like it was neccessary. Then she told me that it was just a tumor, not cancer! HELLO!! What the heck are they talking about? Anyone else have this problem, or am I once again the only lucky one in the group?! I feel like I am getting the run around here, and like they can't get the story straight. I am talking to my primary care doctor as soon as I can get an appointment. This is nuts. Not only is this type of cancer rare, but now I don't know if I got the right diagnosis. Any advise, or opinions? Any would help. I am so stressed!

Thanks,
Cheyenne

creampuff91344

Dear Cheyenne,
The number
Dear Cheyenne,
The number one rule for all of us is, "We are responsible for our own health". That means that if you aren't comfortable with your doctor, you find one that you can be comfortable with. I have made a change in oncologists after completing full treatment for breast cancer, and it was done in such a way that I feel I am in much better hands. If you are having additional problems, don't stop until you find someone who will listen. Dealing with cancer isn't something you want to leave to chance, and you must seek the medical attention you feel you need. Maybe there is absolutely nothing wrong, but you must be at peace of mind in order to go on with your life. Find a doctor who will listen, and explain...NOW. Please keep us informed on your quest. Hugs. Judy

mimivac

OK, you need a serious talk with your oncologist or doctor
I agree with Judy that you may have to change doctors, but first make an appointment with the person who treated you and have a serious discussion. Say you don't understant your diagnosis, treamtment protocol, or followup. Ask him to explain your diagnosis very carefully and the differece between this tumor and a cancerous tumor. You will probably have to be very basic b/c it sounds like there wasn't a lot of communication from the get-go. Be frank and ask, "did I have cancer?" Start from there and then tell him about your symptoms. Judy is right, you need to get control of this situation. You should be clear abour diagnosis, what it means, what to watch for, etc. Good luck, and I hope you find answers!

Mimi

Wolfi

Sorry about your situation
I would say talking to your primary care doctor ASAP is your best bet. You may need to ask for a second opinion by another doctor who specializes in malignant phyllodes tumors. The nurse should not be saying things like that to you. JUST a tumor? I'm sure if she were the one on your end of the phone she wouldn't want to hear something like that.

I found this on ACS link: http://www.cancer.org/docroot/CRI/content/CRI_2_6X_Non_Cancerous_Breast_Conditions_59.asp

___________________________________
Malignant phyllodes tumors are treated by removing them along with a wider margin of normal tissue, or by mastectomy (removing the entire breast) if needed. Malignant phyllodes tumors do not respond to hormone therapy and are less likely than most breast cancers to respond to chemotherapy or radiation therapy. Phyllodes tumors that have spread to distant areas are often treated more like sarcomas (soft-tissue cancers) than breast cancers.

Close follow-up with frequent breast exams and imaging tests are usually recommended after treatment.

__________________________________


Good luck with your search. I hope you can get some answers and lower your stress level - sounds like you've been through enough.

Take care!

mimivac

Another thought
Cheyenne, either the nurse is mistaken or your phyllodes tumor was not the malignant type. Most phyllodes tumors are benign. But the malignant ones need lots of follow-up, so I don't know why they would deny scans if that were the case. There is definitely some confusion going on here.

rjjj

mimivac said:

Another thought
Cheyenne, either the nurse is mistaken or your phyllodes tumor was not the malignant type. Most phyllodes tumors are benign. But the malignant ones need lots of follow-up, so I don't know why they would deny scans if that were the case. There is definitely some confusion going on here.

confusion
I would ask many questions.. as Mimi says they should not deny the scans and I would insist on getting all the correct info.
jackie

cheyennedawn

mimivac said:

Another thought
Cheyenne, either the nurse is mistaken or your phyllodes tumor was not the malignant type. Most phyllodes tumors are benign. But the malignant ones need lots of follow-up, so I don't know why they would deny scans if that were the case. There is definitely some confusion going on here.

Another thought
I think the nurse was mistaken. She stepped over her bounds when she told me it was "just" a tumor! There was no misunderstanding when I was in the doctor's office and he had the pathology back from the partial mastectomy. He said the phyllodes tumor was "malignant" and that it was a "very serious" situation, because the thing had roots through out the whole breast so I needed to have a mastectomy asap, which turned out to be 2 days later. I have called my primary care dc, and posed many questions to her, she will find out what I need to know, and refer me to someone else, preferrably an oncologist. My doctor was a wonderful surgeon, but his one problem was that he didn't like me to ask questions, he had a plan in mind, and I don't think he was concerned about my opinions on the matter. Shame on me, because I have a problem stepping on anyones toes, and I don't like to create issues by asking for a second opinion. But, now I am putting my feelings first, and I am not comfortable leaving things the way they are now. Hopefully nothing will come of it, but I have to know for sure whats going on. Thank you all for your advice and caring. It does mean so much. I will keep you posted on whats going on.

Thanks,
Cheyenne

MAJW

YIKES!
Cheyenne..........I am not familiar with the type of tumor that you had but SOMEONE ie doctors, have dropped the ball somewhere! If your dx was a MALIGNANT phyllodes tumor the nurse that told you it wasn't cancer is a nutcase! Do you have a copy of your pathology report? How big was your tumor?
God Bless you, what a nightmare for you.....the tiredness could still be from your surgery, dizzy from possible pain medications....BUT I WOULD DEMAND AN APPOINTMENT with the surgeon...was he a "general surgeon" or a breast cancer surgeon? Hopefully your primary doc can get you the answers you need......

Best wishes and prayers
Nancy

sherik

cheyennedawn said:

Another thought
I think the nurse was mistaken. She stepped over her bounds when she told me it was "just" a tumor! There was no misunderstanding when I was in the doctor's office and he had the pathology back from the partial mastectomy. He said the phyllodes tumor was "malignant" and that it was a "very serious" situation, because the thing had roots through out the whole breast so I needed to have a mastectomy asap, which turned out to be 2 days later. I have called my primary care dc, and posed many questions to her, she will find out what I need to know, and refer me to someone else, preferrably an oncologist. My doctor was a wonderful surgeon, but his one problem was that he didn't like me to ask questions, he had a plan in mind, and I don't think he was concerned about my opinions on the matter. Shame on me, because I have a problem stepping on anyones toes, and I don't like to create issues by asking for a second opinion. But, now I am putting my feelings first, and I am not comfortable leaving things the way they are now. Hopefully nothing will come of it, but I have to know for sure whats going on. Thank you all for your advice and caring. It does mean so much. I will keep you posted on whats going on.

Thanks,
Cheyenne

Cheyenne
Don't beat yourself
Cheyenne
Don't beat yourself up. I don't think any of us are our own best health advocates right out of the gate. It's so hard to stand up to docs who are supposed to be the helping experts to guide us through this - especially when you aren't feeling well. It's too often the case that docs disappoint, have an attitude or a horrible bedside manner, or just offer poor patient care. Keep asking questions and step on some toes. Your health is the most important thing and you want to be comfortable and satisfied with the info you get (as much as this is all possible). I hope the dizziness and shortness of breath go away! Thinking of you.
Sheri

cheyennedawn

MAJW said:

YIKES!
Cheyenne..........I am not familiar with the type of tumor that you had but SOMEONE ie doctors, have dropped the ball somewhere! If your dx was a MALIGNANT phyllodes tumor the nurse that told you it wasn't cancer is a nutcase! Do you have a copy of your pathology report? How big was your tumor?
God Bless you, what a nightmare for you.....the tiredness could still be from your surgery, dizzy from possible pain medications....BUT I WOULD DEMAND AN APPOINTMENT with the surgeon...was he a "general surgeon" or a breast cancer surgeon? Hopefully your primary doc can get you the answers you need......

Best wishes and prayers
Nancy

I don't have a copy of my
I don't have a copy of my pathology report, and I was only told that the tumor had grown to the size of a large lemon. This Has been a nightmare. The diagnosis and surgery was bad enough, but somehow this is worse. And so depressing. I don't need this additional stress, know what I mean? Now, I just feel foolish, because I guess that these are questions I should have asked, but didn't. What a mess....I am not on any pain medication, quit that after the 1st week, but I have had these dizzy spells before, thats another worry and the reason I requested to have an MRI. In Feb 2000, I had brain surgery to remove a large (beningn) tumor from the brain stem. I was in the hospital for about 1 month, after the surgery I was in intensive care for a week, the tumor was taken out, I had six months of rehab, and aside from a couple followup surgeries over the next 2 years, have had no problems, til now. So, you see, I should be familiar with how this works. (Well, not the cancer part). But, anyway, still waiting on the doctor to call me back..
You guys are wonderful! Thanks for caring!

lanie940

cheyennedawn said:

I don't have a copy of my
I don't have a copy of my pathology report, and I was only told that the tumor had grown to the size of a large lemon. This Has been a nightmare. The diagnosis and surgery was bad enough, but somehow this is worse. And so depressing. I don't need this additional stress, know what I mean? Now, I just feel foolish, because I guess that these are questions I should have asked, but didn't. What a mess....I am not on any pain medication, quit that after the 1st week, but I have had these dizzy spells before, thats another worry and the reason I requested to have an MRI. In Feb 2000, I had brain surgery to remove a large (beningn) tumor from the brain stem. I was in the hospital for about 1 month, after the surgery I was in intensive care for a week, the tumor was taken out, I had six months of rehab, and aside from a couple followup surgeries over the next 2 years, have had no problems, til now. So, you see, I should be familiar with how this works. (Well, not the cancer part). But, anyway, still waiting on the doctor to call me back..
You guys are wonderful! Thanks for caring!

I would ask for a copy of
I would ask for a copy of your pathology report. I have all my pathology reports.

mimivac

cheyennedawn said:

I don't have a copy of my
I don't have a copy of my pathology report, and I was only told that the tumor had grown to the size of a large lemon. This Has been a nightmare. The diagnosis and surgery was bad enough, but somehow this is worse. And so depressing. I don't need this additional stress, know what I mean? Now, I just feel foolish, because I guess that these are questions I should have asked, but didn't. What a mess....I am not on any pain medication, quit that after the 1st week, but I have had these dizzy spells before, thats another worry and the reason I requested to have an MRI. In Feb 2000, I had brain surgery to remove a large (beningn) tumor from the brain stem. I was in the hospital for about 1 month, after the surgery I was in intensive care for a week, the tumor was taken out, I had six months of rehab, and aside from a couple followup surgeries over the next 2 years, have had no problems, til now. So, you see, I should be familiar with how this works. (Well, not the cancer part). But, anyway, still waiting on the doctor to call me back..
You guys are wonderful! Thanks for caring!

Why should you feel foolish?
Because your doctor wouldn't entertain questions? Because you were just diagnosed with cancer and didn't know exactly what to ask? Now you are being foolish! Do everything you can to get the best possible care. If something doesn't feel or look right, ask and keep asking. You will get results and feel much better. And never worry about looking foolish. Did you go to medical school? Did you study oncology? No? Well, then ask for explanations and don't stop. You'll get through this.

Mimi

cheyennedawn

mimivac said:

Why should you feel foolish?
Because your doctor wouldn't entertain questions? Because you were just diagnosed with cancer and didn't know exactly what to ask? Now you are being foolish! Do everything you can to get the best possible care. If something doesn't feel or look right, ask and keep asking. You will get results and feel much better. And never worry about looking foolish. Did you go to medical school? Did you study oncology? No? Well, then ask for explanations and don't stop. You'll get through this.

Mimi

Thank you Mimi
I have started demanding answers, and I don't even care if they think I am being or acting foolish. It is very important to me to feel good again, like before I had that stupid tumor! I haven't been before now, but now I am letting myself get very, very angry. And that will help me get through this. I am also asking for a copy of my pathology reports. Better later than never!