Questions to ask/evasiveness of oncologist

[LilaAnderson]

My sister was diagnosed, after surgery, with Stage IIIc ovarian cancer Thurs.  I am unhappy with her oncologist's truthfulness (70% of women with this go into remission, no real response to my questions re the fact it has entered lymphatic system,evasiveness re what he's looking for in the lab tests, etc.)I asked him about these statements in front of my sister and she became quite upset, thinking I was being too aggressive and would hurt her relationship with him.I know there's a fine line between hope and evasion, but is it common for the oncologist to be so evasive?  From now on, all my questions will be directed to my own physician.  Do you have suggestions about what I should ask, as I will not tell my sister, but would like as much information as possible.

[thezoo]

HI all,

Not to butt in to your conversion but I was reading through your post and thought maybe someone could help me with a extremely hard decision.

My mom (63 yrs old) was dx'd with stage 4 OV in Feb. 05, she had a complete hystrectomy and the cancer metastized in her spleen as well so they removed that as well.  Her oncologist told her from the start that he would never be able to put her into remission that the chemo would just keep her stable. So they did chemo for 2 years and every chemo she was either allergic to or it quit working. Her CA count when she first started was 27,000, one of the chemos she was on actually got her CA count down to 258 but she became allergic to it and had to stop it.
Now 2 years later, the dr. has told her that he has used every OC chemo there is and that she is terminal and there is nothing else he can do for and that she should go live the last months that she has.
She has accepted this and Hospice has been called in.
She has 4 children and 2 of us believe there is still more that can be tried and 2 of us think that she should just let Hospice do there thing because she is terminal and too far gone.
Her tumors and Lymph nodes (it is also in some of her bones in her ribs, pelvic and spine) have increased in size and she ascites which she has drained every 8 to 10 days but it has not gone to the liver, bowel or any other organ.

We have contacted Cancer Centers of America and she had an appt with them in OK in May but she cancelled it when her dr. told her she was terminal and doesnt feel she will make it until May.

I have read alot on the internet and have read several websites that says some cancer patients that are chemoresistant can have chemo in longer durations and become desensitized to that chemo.

If anyone has had the same or similiar situations or if anyone has any suggestions it would be more than greatly appreciated.

Thanks again
Joyce

[LilaAnderson]

Thanks so much for your help.  I'm in the dark abut many things as my sister continues to have no desire to know anything about her Stage IIIc ovarian cancer. Her pathology samples that were taken during surgery were received yesterday.  My sister's husband told me that the oncologist said they were just as expected and he was satisfied with that answer.  I asked what that meant and he said "She has cancer."  Don't these test look at other things and, if so, what are they examining?  I won't discuss any of this with my sister and brother-in-law, but I would really like the information.  Do you know of any good/up to date books re ovarian cancer?  Thanks.

[SimplyStar]

I can tell you what happened with my daughter  this past week, they set up a conference with 5 people from the onocology dept at Mayo, each one evidently had her records and had already read them. Leslee and her hubby were present and were allowed to ask any questions they needed answers to,  Plans were discussed, options were given, each person in the room was able to present their ideas for the plan. Pros and cons were discussed,  outcome of various already applied trials were laid out. When the final plan was in place, they all went over it in detail, what she could expect from the trial and what she would have to do to help.  This entire session was taped,  and a copy given to her.  She was told they would meet like this every 2 months when she returns there for  a routine check up. Included in the conference were a radiologist, lab specilist, a surgeon, and 2 onocologists. There was also a person from the drug company funding the trial. He brought the lab results and research data. Leslee said that was very technical and way above her head.  Leslee has a recurrance of stage 3 OVCA,  She will be the first in this trial along with 9 more to be recruited. Will keep you posted on her progress.

[kismetfarm]

I think oncologists - as human beings - just differ and each have their own style. The first one I had I found very difficult to deal with as he interpreted every single question I had as an attempt to avoid chemo. That wasn't my intention at all I just wanted some answers to questions but the answer was nearly always "you need to have the chemo there is no other way round it" If I pressed the issue he left the room! Some asking round suggested he was well known for having no bedside manner.  The next oncologist answered most of my questions quite happily but now further down the track we have a breakdown in our relationship as I know he hasn't told me all the options and when I ask difficult questions I get answers like "I don't see that is going to achieve anything" and shuffled back out of his office.  Again general opinion on his character indicates that this is the way he tends to react in those situations.  So I recently got another opinion which was set up specifically to answer all my questions and give me all the options. Which finally did sort out a few things for me and I feel a lot more positive about my disease and in a position to set some parameters on my treatment knowing that they are most likely to be the right ones.

It is difficult if your sister doesn't want to know about it and you do. Maybe she could give her permission for you to discuss her file with someone else so you can get all the information you need without giving her too much information.

[LilaAnderson]

You have been so helpful and I truly thank you.

[SimplyStar]

Right after my daughters surgery, her surgeon/onoco came into the family waiting room and asked us waiting there how much we wanted to know about what had happened and what he expected to happen in the near future.  Leslee's family, her hubby, 3 daughters, 2 son-in-laws, 2 sister/brother in-law familys, 3 brothers and myself, listened to him tell us all he knew at that time,  he then explained what plan he would be following to save her life.  That is what the onoco is called to do in cases like this, he is the expert and  knows what needs to be done. My daughter of course was told later when she was able to connect the dots. This is a situation that needs full cooperation of the patient and family, co workers.  We each accepted a phase of her recovery, mine fell into research and the love from a Mother, hubby  had the major support of love and caring, daughters were there to help with the mundane things,  cleaning, laundry, her co workers brought in food.  Until Leslee was able to slowly take semi charge of her house, we all pitched in. Then the chemo began, I guess I will just tell you my part,  I found this site and every time I had a question , it has been answered , I have been able to pass on to Leslee all that I have found to be helpful, she goes to her appointments well informed.  Leslee is the one though that is in charge of her cancer now, it is in her body, she is the one that knows how to describe the pain , the different feelings that occur, no one else can feel that,  The onoco and Leslee have a good relationship in that he knows he can speak freely to her and those around her and  get to the root of this healing and hopefully a remission. Leslee is 50 years old, dx last June, chemo finished in Nov and now has a recurrance that will hopefully be taken care of in a clinical trial.  You, as her sister , can play the part that I do, but to do so you must be well informed as to her needs.  She will get past the denial,  she must,  if she is going to accept the rough path to healing.  Do not walk behind her or in front of her, walk beside her.  Remember we are always here to walk with you also.

[Helmar]

Hello again Lila...It does make things a little harder for you, if your sister doesn't want to know about her condition. I just feel from my own point of view, I wanted to know everything, so that I could fully understand what was happening, and therefore could be part of my Oncol. planned treatment of me... but people are different, so hopefully your sister will gradually change her mind, and may feel it's best for her to know sometime in the near future. In the meantime, it's good that you are able to gather the info for her, and thus help her to understand what's happening when she reaches the stage of wanting to know. It's a terrible shock to be told that one has cancer, and I guess it takes some people longer than others, to take it all in. Re the Oncol. being evasive... the Oncol. that I have is very straight-forward, and he answers every question I have with honesty. Right from the start, I conveyed to him that I didn't want to be treated like a mushroom, and that I wanted to know all of the details regarding my case, even if there were things that weren't the best, but we need to know, I think. No good hiding our heads in the sand... it won't go away, so it's best to meet it 'head-on', and that's gives us a better understanding of how this all works. I do hope your sister will eventually want to share with you, what is happening, and that will lighten your load too.
You will find this Forum is great for gleaning info and support, and the folks here are wonderful for that.
I was dx Feb'04 Stage 3C but later raised to 4 because of bowel involvement, but I'm still here, and doing well. It's important that your sister doesn't ' throw the towel in' and think that all is lost, but she has to fight it too.
Thinking of you, and hoping that everything will work out good for you and your sister. *hugs*....Helmar...

[LilaAnderson]

Thanks for your response.  My sister doesn't want to know about her case, but possiblly this will change later.  Denial runs in the family.  I don't want to direct her case, but, for myself, I'd like to have as much info as possible. (As a background, our mother died in 97, in part, because the physicians never really told us about her condition and we didn't know the right questions to ask: the day before she died, I walked in on her, in the hospital, tied to her bed, soaking in urine and struggling to breathe).  Any thoughts about questions (which my own physician has agreed to discuss with me)? Are most oncologists rather evasive? I'm NOT going to try to direct her care, but, for me, knowledge brings some comfort and I'll keep it to myself unless it's terribly important or she asks me. Thanks.

[Helmar]

Hello...and I'm sorry to hear about your sister, but you will find that most of us here have been through the exact same thing. Personally, I think your sister should be directing the questions to her Doctor. It's nice to know that she has you to support her, but she is the patient, and really she needs to know exactly what's happening with her situation. It's a natural thing I guess, to try and protect our loved ones from anything that may cause hurt to them, but this is such a lethal and nasty disease, that your sister really needs to know the full story, so she can make some decisions with her Doctor, on what's best for her. Just because she has been dx with Stage 3C  doesn't necessarily mean that she can't be put into a long remission. I know of a lady who was dx Stage 4... and that was 16 years ago, and she is still doing well.
I hope your sister will do well, and if she knows what's happening in her case, then she will be in the position to meet this head-on, and work out with the help of her medical team, what's best for her .
Wishing you both the best... Helmar...