CancerCompass message board discussion started by sylviad1 on 10/10/2007 http://www.cancercompass.com/message-board/message/all,16968,0.htm Wed, 20 Aug 2008 00:00:00 GMT Wed, 20 Aug 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ There isn't really a category that covers my subject because it might not be a common occurance.  My best friend of 30+ years was diagnosed with ovarian cancer about 3 years ago at stage IV.  It is because of her own personality that it reached that high because when she first had symptoms, she went to her doctor who refered her to a surgeon and when the surgeon told her that she only had a simple polyp that was causing the bleeding, she never questioned it.....................for 3 years.  At that time she asked me if I thought the bleeding she was continuing to have was normal, I told her absolutely not.  This time when she went back to her doctor, he ordered a scan which showed a very large ovary. this was 3 years ago.  She then had surgery and received chemo and was doing quite well until about a year later when she started losing her balance, memory etc.  This went on for quite awhile and her cancer doctor was not informed by either the patient or her husband (who always did and still does capitulated to his wife's wishes).  Finally I told him that he needed to tell the doctor, but because the patient didn't want to bother the doctor, the husband didn't do anything until she had nearly lost the sight in one eye, was incoherant and finally fell.  She was admitted to the hospital and was diagnosed with a small brain tumor which was preventing fluid to drain properly.  Radiation got rid of this tumor, but because of the lack of early treatment, the eye was permanently damaged and her short term memory was slightly impaired.  For almost a year now she has been in and out of the hospital, but it is only after I insist that he take her to the ER and they admit her.  Her daughter has tried calling the doctor's office asking the doctor to call her so she can talk about her concerns about her mother's home care and symptoms that the doctor didn't know about and I called a left a message about 4 months ago asking the doctor to please call the daughter to discuss this also.  The doctor did not.  The symptoms that were not being relayed to the doctor were: persistant hiccups, nausea, vomitting, upper abdominal pain.  Finally, when she started vomitting blood, her husband took her to the ER where she was admitted.  After several tests were done and nothing was found, she was transferred to the hospital's annex which is for patients who don't require acute care.  When I talked to the husband,  I asked if he had told the doctor about my friend's other symptoms and he said no so I told him that he needed to because tests don't always find the problems because they may not be the right tests.  When the doctor called him, he did finally tell her about all the symptoms.  The doctor told him that the hospital didn't even tell her that she was admitted because she had been vomitting blood.  Makes me curious as to exactly what her admitting diagnosis was; probably "End-stage carcinoma", right?  So, this morning the husband called to say that they did some scans with different views and found a vine-like cancer traveling up the side of her abdominal wall and she doubted that any kind of treatment would help at this stage and that my friend as maybe a year left.  The point of this message is that caregivers who have patients with impaired thinking, should not allow those patients to make the decisions and tell the doctor about any changes at all no matter how inconscequencial they seem to you.  And doctors, please listen to family when they want to talk to you about concerns that are not being addressed by the patient or their caregiver, especially when you're told (in a message) that the situation can cause death.  My friend and her husband put all their faith in their doctor's ability, which unfortunately didn't include mind reading,  and thought she could find any problem without being bothered by their phone calls.  If my friend and her husband had been aggressive instead of passive in their cancer fight, we would still be enjoying Saturday night dinner and pinnochle instead of having just a few minutes a day to say " Hi, how ya doing?"  Doctor's should think about classes for all new patients and their families.  Sorry this is so long, but I am very angry about this lack-of-communication thing.  Here are a couple of other situations:  my friend suffered from a lot of nausea from chemo until I suggested that she eat tiny amounts thruout the day;  when she was given rx for potassium and then started vomitting everyday, I suggested that she ask for a time-realeased pill instead.  The new rx worked well until my friend complained about the size of the pill and asked her husband to cut it in half.  I'm glad that my husband and I were there when he cut it because I saw that the pill was looked different inside.  I asked him what he was cutting and when he told me, I made him throw the pill away because my friend would really have been sick if she'd taken that much potassium at once.  Again, lack of information.  Ok, Ok, now I'm done grousing, but I'm still upset. Hopefully someone will read this and be helped. sylviad1 Wed, 10 Oct 2007 00:00:00 GMT ..tell your doctor everything, no matter how embarrassing, s'wot they get paid for.. and it gets easier as you get more professional about it.. a white rabbit Thu, 11 Oct 2007 00:00:00 GMT