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My Gyn/onc visit-UPDATE

christyny631
Posts: 24
Joined: Apr 2009

Wow, what a difference in doctors! He was calm, cool, collected, informative, and took the time to actually educate me. He allowed me time for questions, and best of all he made me laugh!! Great bedside manner.

In a nutshell, he explained my pathology. Yes, endometrial tissue was taken from my uterus, but there is no way to be certain where in the uterus it came from. It is dysplastic, as well as in the endocervix with glandular involvement. He said it was squamous not glandular dysplasia, which is common and common is good. Anyway, he gave me treatment CHOICES. I was astonished. He said I could do nothing (not recommended), do the cone, or have a total abdominal hysterectomy. His recommendation was the TAH. His reasoning was it would alleviate the prolapse, abolish the bleeding issues I am still having post ablation, and diagnostically & therapeutically treat the dysplasia, and I'm a candidate because I am done having children (he said I dont HAVE to have the cone like the other doc because of my case circumstances). I didnt feel he was trying to talk me into it, he was straightforward. He said this kind of cancer invades down into the tissue, and we'll only know if its invasive when we get the pathology back. He made no attempts to hypothesize whether my prognosis was good or bad, which I admired. He said if the cancer was invasive, there would most likely be chemo/radition following surgery. He wants to do the surgery Tuesday. I may have to put it off 3 weeks, being I'm a single Mom of 3 with only my working mother to help me out. I have to see what she says.

All I can say is WHEW! I am still standing with one foot on each side of having cancer vs. not having it....but at least now I feel I'm in tune with my doctor and in good hands!

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

That's really wonderful! I'm glad that you didn't give up until you found someone you can trust and that trusts YOu enough to treat you as an adult. Now you can make a decision and get the ball rolling. A hysterectomy is no fun, but suffering and wondering and not being given enough information to make good choices is worse, in my opinion. I'm proud of you, Christie. It's hard to keep pushing when you aren't feeling good. But you did. And you prevailed! Big Hugs!

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

I edited out the double message. Board is slow and skicky today. Sorry for the tech goof up!

Ro10's picture
Ro10
Posts: 1426
Joined: Jan 2009

A doctor you can relate to makes all the difference. I am glad yours was a positive experience. It is nice to have choices, also, even if you don't like all of the choices. Good luck with making your decision. I hope your pathology comes back negative for cancer. You will remain in my prayers.

nursey420's picture
nursey420
Posts: 53
Joined: Mar 2009

christy

Good for you. Glad you found someone who treated you as you should be treated. As for surgery putting it off for a few weeks until you can get your kids taken care is a good idea. Good Luck and keep us posted.
Lisa

deanna14
Posts: 734
Joined: Oct 2008

I can feel your relief in your post. It goes a long way to have your questions answered and feel like you are being included in your treatment decisions. I'm very happy that you are feeling better. I hope all goes well with finding help with your children during surgery. My prayers are with you.

christyny631
Posts: 24
Joined: Apr 2009

I just got chills reading all your replies. Thank you all so much for sharing in my momentous relief. :)

I cant believe half the stress I had was because I had a bad doctor. I'm glad I took the advise in the replies to my posts. At times I thought people would think I was foolish for posting here. I'm glad I did anyway, it's helped me immensely. ;)

My mom & my sis have agreed to take days off from work, but my Mom cant do it until her boss is back from vacation. I'm trying to schedule for June 9th. I'm just going to make the most of the time with my kids from now until then. Me recovering over the summer is going to stink for them.

deanna14
Posts: 734
Joined: Oct 2008

What type of surgery are you going to have? Did they offer you the robotic surgery? I had the open hyst., but was originally scheduled for the robotic. My insurance company would not approve the robotic because it was so new. If your doc does robotic and your insurance will cover it, your recovery time will be a lot faster.

christyny631
Posts: 24
Joined: Apr 2009

I am going to have a total abdominal hysterectomy, I wasnt offered DaVinci.

I did ask my insurance co. about DaVinci coverage prior to meeting with him. They said it would have to be pre-approved if it was a new procedure. New to them meant within the last 10 years lol. They said the doc would have to submit the request. Maybe he knew my ins. wouldnt cover it, or maybe he had other reasons. I dont really know why it wasnt offered??

Surgery date is officially June 9th. Docs office said they would test the tissue in the OR (while I'm on the table) to determine if they need to do a radical. I wondered if it was invasive what they would do. I was worried I would need another surgery. Glad I can cancel that off my worry list ;)

daisy366's picture
daisy366
Posts: 1493
Joined: Mar 2009

Good job Christy. Glad you have a doc you like and seems to know what he's doing. Best wishes with your treatment. You've seen posts here on getting the functional assay and hormone sensitivity done from your pathology tissue. I'd recommend you talk to your doctor about this.

Hugs, Mary Ann

christyny631
Posts: 24
Joined: Apr 2009

Thank you so much!

I actually havent read anything about functional assay or hormone tests done. :/ LOL!

I briefly looked them up and it makes sense to have them done. I will talk to him about them. Thanks for the suggestion! :)

bonniesue
Posts: 126
Joined: Apr 2009

Can you please give me info on the assays?

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

Findings presented at the 41st Annual Meeting of the European Society for Clinical Investigation in Uppsala, Sweden, April 18, 2007, concluded that "functional profiling" with cell culture assays is relevant for the study of both "conventional" and "targeted" anti-neoplastic drug agents (anti-tumor and anti-angiogenic activity of Iressa, Tarceva, Sutent, Nexavar, and Avastin in primary cultures of "fresh" human tumors).

Cell Culture Assays with "cell-death" endpoints can show disease-specific drug activity, are useful clinical and research tools for "conventional" and "targeted" drugs, and provide unique information complementary to that provided by "molecular" tests. There have been more than 25 peer-reviewed publications showing significant correlations between cell-death assay results and patient response and survival.

Many patients are treated not only with a "targeted" therapy drug like Tarceva, Avastin, or Iressa, but with a combination of chemotherapy drugs. Therefore, existing DNA or RNA sequences or expression of individual proteins often examine only one component of a much larger, interactive process. The oncologist might need to administer several chemotherapy drugs at varying doses because tumor cells express survival factors with a wide degree of individual cell variability.

There is a tactic of using biopsied cells to predict which cancer treatments will work best for the patient, by taking pieces of live "fresh" tumor tissue, applying different chemotherapy treatments to it, and examining the results to see which drug or combination of drugs does the best job killing the tumor cells. A cell culture assay test with "functional profiling," using a cell-death endpoint, can help see what treatments will not have the best opportunity of being successful (resistant) and identify drugs that have the best opportunity of being successful (sensitive).

"Functional profiling" measures the response of the tumor cells to drug exposure. Following this exposure, they measure both cell metabolism and cell morphology. The integrated effect of the drugs on the whole cell, resulting in a cellular response to the drug, measuring the interaction of the entire genome. No matter which genes are being affected, "functional profiling" is measuring them through the surrogate of measuring if the cell is alive or dead.

For example, the epidermal growth factor receptor (EGFR) is a protein on the surface of a cell. EGFR-inhibiting drugs certainly do target specific genes, but even knowing what genes the drugs target doesn't tell you the whole story. Both Iressa and Tarceva target EGFR protein-tyrosine kinases. But all the EGFR mutation or amplificaton studies can tell us is whether or not the cells are potentially susceptible to this mechanism of attack. They don't tell you if Iressa is better or worse than Tarceva or other drugs which may target this. There are differences. The drugs have to get inside the cells in order to target anything. So, in different tumors, either Iressa or Tarceva might get in better or worse than the other. And the drugs may also be inactivated at different rates, also contributing to sensitivity versus resistance.

As an example of this testing, researchers have tested how well a pancreatic cancer patient can be treated successfully with a combination of drugs commonly used to fight lung, pancreatic, breast, and colorectal cancers. The pre-test can report prospectively to a physician specifically which chemotherapy agent would benefit a cancer patient. Drug sensitivity profiles differ significantly among cancer patients even when diagnosed with the same cancer.

The "functional profiling" technique makes the statistically significant association between prospectively reported test results and patient survival. It can correlate test results that are obtained in the lab and reported to physicians prior to patient treatment, with significantly longer or shorter overall patient survival depending upon whether the drug was found to be effective or ineffective at killing the patient's tumor cells in the laboratory.

This could help solve the problem of knowing which patients can tolerate costly new treatments and their harmful side effects. These "smart" drugs are a really exciting element of cancer medicine, but do not work for everyone, and a test to determine the efficacy of these drugs in a patient could be the first crucial step in personalizing treatment to the individual.

Author/Speaker/Performer :Larry Weisenthal, M.D., Ph.D.; Contact information: phone: (714) 596-2100. Link: http://weisenthal.org/Weisenthal_ESCIa.pdf Source : Eur J Clin Invest 37 (suppl. 1):60, 2007

bonniesue
Posts: 126
Joined: Apr 2009

Thanks for the info. Hope your rads are going good. Have a good weekend.

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