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| Date Entered at Shared Experience: 11/11/2001 |
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UTERINE |
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Papillary Serous Adenocarcinoma,
recurrent endometrial, stage IV |
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Taxol, Carboplatin (every 3 weeks) |
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only chemotherapy - just finished 5th round (signs tumors are shrinking)
hysterectomy in 1999 following diagnosis of endometrial cancer; seemingly no cancer remained
breast cancer in 1993 (in remission for eight years) |
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While my mother feels tired and emotional for 10 days following chemotherapy, an
an active life has continued. She has pain in abdomen with too much walking, pain
in legs and numbness in fingers and feet. I, her daughter, am writing as my
father is worried about her reading too much information about cancer (I disagree)
The other entry stories have given me either hope or company. I suppose
mom is only slowly coming to accept the challenge that she faces. But she is
still living bravely, continuing to do volunteer work and we are expecting to
fully enjoy a family vacation this winter. I am trying to encourage her to work
on relaxation, diet and seeking other possible complementary care. At the moment though,
she finds it difficult to have put energy into these other aspects of cancer care. |
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We have had great difficulty getting information from our doctors. Their
comments when we get them have been contradictory. We as a concerned family
politely ask lots of questions, since we want to be able to understand the
treatment as much as possible. Our med. oncol. has poor patient-relation skills
and inspires no hope in even that 1% chance against statistical evidence. She
also appears to be dangerously self-defensive. When we discussed getting a
second opinion for purely peace-of-mind purposes, she suggested that we not start
chemotherapy if we weren't going to be happy. If we hadn't, my mother might not
be alive and well today. She makes many remarks indicating that she is insulted
when we ask questions about treatment. I continue to ask questions because
treatment is dependent upon understanding what is happening with the patient not
just a textbook calculation.
I'd like to add that our intial round of doctors at the hospital did give us much
misleading information in order, I suppose, not to worry us.
For instance, we were told that the cancer would not be in her bones with this
type of cancer. It turned out that cancer was in the bones all along; I guess
they were worried about us pressing for a bone scan, when it didn't matter
where the cancer was as the treatment will be the same. I wish they would have
just told us that. This type of senario has happened often and continues to happen.
I'd like to recommend that patients and families try get as much information
as possible, but accept that a doctor can give a vague or misleading response for
in order to protect the patient from extra worry. |
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If anyone has information of treatment of a papillary serous adenocarcinoma caseI would be very appreciative. We want to make sure we are doing everything possible.
Secondly, our doctor is considering taking us off taxol (actually she lowered
the dose without telling us) based on my mothers reports of mild pain in legs.
My mom is still able to walk an entire day in Manhattan, so we wonder if it is
really necessary to go off Taxol. If anyone has had similar experiences with
Taxol and is still on Taxol please let us know. On the last CAT scan the tumors
were shrinking; so we'd like to stick with it. If anyone has questions for me, I'd
be happy to respond as well. |
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