Honest answers please

minky1225
minky1225 Member Posts: 70
edited March 2014 in Ovarian Cancer #1
Hello again. I just got home from visiting mom in the hospital-I am getting a little nervous that she might know more than what she is telling me. They are going to put a port in on Monday for chemo/radiation. I asked her what kind of treatment they are going to be doing(so I can come home and post it here to get info) and she said that they haven't told her. She has also never told me where the tumors are. I have asked her and she just said that she's not sure. FYI, my mom is sharp as a tack and retains everything doctors always tell her.

I just want to know if that's typical for docs not to tell you where all the tumors are located or what kind of chemo/radiation that they might be doing. Is it also typical to keep you in the hospital while they start chemo?

Thanks in advance

Comments

  • Barbara53
    Barbara53 Member Posts: 652
    #2
    communication problem
    Oh, dear, there is a communication problem here. It may partly be due to your last question. The docs are moving very quickly, but DO NOT assume they had an open and honest conversation with your mother about her condition. They probably came in her room, told her what they wanted to do, and left. She may feel a little embarrassed at how little she actually knows, but not want to demand more info because she really wants to squeeze her eyes shut and not open them again until it's over.

    That's not gonna work. I advise having your mother sign a release so you and your sibs can have open access to medical resources. My mother's oncologist has family members and patients attend a chemo education session with his nurse before the treatments begin. They sugar-coated things, but at least we knew what to expect.

    If you can't get a caregiver education session from your mom's doctor, see about sitting down with the unit social worker on the oncology unit at the hospital. She (or he) should be able to explain your mother's therapies, at least in broad terms.

    Good luck. This week is bound to be better than the last one!
  • Cindy Bear
    Cindy Bear Member Posts: 569
    #3
    Hi Minky
    Hi Minky. Sorry to hear the news abour your mom and I know you must be terrifeid. I lost my mom to Stage IV uterine cancer in June 09 and am still reeling from shock, grief and anger.
    My mom was much older than yours, 78 at time of diag. , 79 when she passed 4 mos. into "treatment" so don't read anything into that. Your mom is still young and sounds likes she's a strong, vital woman. Your mother might really not know. A cancer diagnosis hits you on the end like a sledgehammer. Maybe she didn't have her wits about to ask, or is having trouble remembering things because of the stress. My own experience is that the doctors, NP's and nurses did a sort of song and dance, softshoe tapdance. The diagnosis, Stage IV, chemotherapy he spit, couldn't wait to usher us out of the room and into the conference room with the lead chemo nurse. I felt like we were being pressured into buying a used car. My sister took my mother to the chemo/orientation class and I so wish I had gone. Though they give you lots of handouts and make you sign a disclaimer before treatment, they really did sugar coat things. When I asked my sister about side effects, she said, "Oh they didn't think she'd have that many" My husband and I had to call and find out what chemo's they would be giving her, they never volunteered this info. She received Taxol and Carboplatin, the "Gold standards" for first time ovarian and uterine diag. She went every MOn. for 3 wks, then off 1 wk. I would say it's not normal to be hospitalized for all but the most agressive of chemos but with your mother's lung issues it might be necessary. Also, did you mom have cat scans, pet scans etc? I do know that in the pet scan they use a measurement called SUV. The educated idiot gyn/onc. treating my mother didn't have the decency to explain to us what this was until I grilled him after her death. It is a measure of how much of the radioactive glucose cells take up. It means Standard uptake volume. The theory being cancer cells will take up more and light up more on the Pet. Any number over 2.7 is malignancy. Sorry for the anger in my post. Anyhow good luck to you and yes get those answers from doctors, get your mom's medical records if she'll permit it. I will keep you and your mom in my thoughts and prayers.
  • Hissy_Fitz
    Hissy_Fitz Member Posts: 1,834
    #4
    Cindy Bear said:

    Hi Minky
    Hi Minky. Sorry to hear the news abour your mom and I know you must be terrifeid. I lost my mom to Stage IV uterine cancer in June 09 and am still reeling from shock, grief and anger.
    My mom was much older than yours, 78 at time of diag. , 79 when she passed 4 mos. into "treatment" so don't read anything into that. Your mom is still young and sounds likes she's a strong, vital woman. Your mother might really not know. A cancer diagnosis hits you on the end like a sledgehammer. Maybe she didn't have her wits about to ask, or is having trouble remembering things because of the stress. My own experience is that the doctors, NP's and nurses did a sort of song and dance, softshoe tapdance. The diagnosis, Stage IV, chemotherapy he spit, couldn't wait to usher us out of the room and into the conference room with the lead chemo nurse. I felt like we were being pressured into buying a used car. My sister took my mother to the chemo/orientation class and I so wish I had gone. Though they give you lots of handouts and make you sign a disclaimer before treatment, they really did sugar coat things. When I asked my sister about side effects, she said, "Oh they didn't think she'd have that many" My husband and I had to call and find out what chemo's they would be giving her, they never volunteered this info. She received Taxol and Carboplatin, the "Gold standards" for first time ovarian and uterine diag. She went every MOn. for 3 wks, then off 1 wk. I would say it's not normal to be hospitalized for all but the most agressive of chemos but with your mother's lung issues it might be necessary. Also, did you mom have cat scans, pet scans etc? I do know that in the pet scan they use a measurement called SUV. The educated idiot gyn/onc. treating my mother didn't have the decency to explain to us what this was until I grilled him after her death. It is a measure of how much of the radioactive glucose cells take up. It means Standard uptake volume. The theory being cancer cells will take up more and light up more on the Pet. Any number over 2.7 is malignancy. Sorry for the anger in my post. Anyhow good luck to you and yes get those answers from doctors, get your mom's medical records if she'll permit it. I will keep you and your mom in my thoughts and prayers.

    I did not know.....
    I did not think to ask the names of my chemo drugs at first, and my doctor did not volunteer the info until our first post-op appointment - a week or so before the first chemo treatment.

    I knew the location of my tumors, as well as size, as soon as my PCP got the results of the sonogram, however. I had a softball size tumor on my left ovary and a smaller one in my intestine. Both were removed during my de-bulking surgery, as well as the omentum and 8-10 inches of my intestine.

    I specifically told my doctor that I wanted to be the second person to know anything and everything (obviously, he would be the first). Some people don't want that, however. I think doctors tend toward a middle ground, unless the patient indicates otherwise. I would be beyond furious if my doctor took my husband and/or children aside and gave them more insight/information than I myself had been given. I get to decide when and to whom my diagnosis/prognosis, etc is disseminated.

    Carlene

    Carlene
  • Mawty
    Mawty Member Posts: 133
    #5
    Hissy_Fitz said:

    I did not know.....
    I did not think to ask the names of my chemo drugs at first, and my doctor did not volunteer the info until our first post-op appointment - a week or so before the first chemo treatment.

    I knew the location of my tumors, as well as size, as soon as my PCP got the results of the sonogram, however. I had a softball size tumor on my left ovary and a smaller one in my intestine. Both were removed during my de-bulking surgery, as well as the omentum and 8-10 inches of my intestine.

    I specifically told my doctor that I wanted to be the second person to know anything and everything (obviously, he would be the first). Some people don't want that, however. I think doctors tend toward a middle ground, unless the patient indicates otherwise. I would be beyond furious if my doctor took my husband and/or children aside and gave them more insight/information than I myself had been given. I get to decide when and to whom my diagnosis/prognosis, etc is disseminated.

    Carlene

    Carlene

    I did not know
    Hi,

    My experience was the opposite of Carlene's: I knew what drugs I was getting, but I didn't know how big the tumors were. I didn't even ask until a week ago when I started my second regimen of chemo for a recurrence! I don't know why I never thought to ask. I was just told that the cancer was throughout my abdomen including 3 lymph nodes.

    I find it interesting that hospitals offer orientation for chemo. I wish they had done that for me. I hadn't seen the room and in my head I could see people being pulled into the room kicking and screaming and crying and being sick and upset. Well, that was just my brain working overtime, and the orientation would have solved that problem! :-)

    I think our minds take in information when we're actually ready to receive it. That's why I always take someone with me to either take notes or at least be a second ear. So many Times I've heard things in a much more negative way than my husband or friend.

    Blessings,

    Marty
  • saundra
    saundra Member Posts: 1,370 Member
    #6
    Pathology Reports
    I get copies of all my pathology reports from needle biopsy, surgery, and CT scans. This helps me although I do not understand it all it gives me something to ask specific questions. All patients can get these!!!!
    l think my questions are answered truthfully but my oncologist is not as direct at the gyn/onc.

    My husband tries to be at every appointment and visit and takes very good notes ( an old news reporter habit) to refer back to.

    Is this her first port or a different kind??

    Saundra
  • LPack
    LPack Member Posts: 645
    #7
    In the know
    My onc/gyn is very up front about everything and even writes down what we have discussed on her notes. Nothing like covering your butt when dealing with surgeries and chemos.

    I know of a couple young men who were kept in for chemo (one actually is still having chemo and spends the whole weekend in the hospital) and I have a very good older female friend (like a mom) who has had breast cancer in the 70's, then the other breast in the 80's and then colon cancer early 90's and she had chemo most the time in the hospital and she is going to be 77 this year!

    But don't anyone around here but me that has had Ovarian cancer except one other lady and I never asked her if she had chemo and stayed in the hospital. She is the one that was diagnosed with Ovarian Cancer and did not have her ovaries. Took them awhile to figure that out. She has been cancer free for 7 years now.

    Living for Eternity,
    Libby
  • Tina Brown
    Tina Brown Member Posts: 1,036 Member
    #8
    Honest observations
    In my experience (I am from the UK but it shouldn't make a difference) all of the doctors I have come across have been very clear and open about the condition, treatment and prognosis. In some case too much so and I have left the hospital feeling really depressed. I think they feel duty bound to be honest so the patient has all of the informatiion at hand to make informed decisions. However I must admit I am the sort of person who "needs to know" everything - thats how I cope. To know the worse - you can prepare for it. If it is then found to be "not so bad as we thought" then you actually feel relieved. Weird strategy but it works for me.

    But getting back to your original message - most doctors in my experience are very careful to explain exactly about your cancer, where it is, how big the tumour is, what they are going to do about it. Its almost like a plan of action for them as much as for the patient.

    I hope things work out for you - keep us posted. Love Tina xxxx
  • msfanciful
    msfanciful Member Posts: 559
    #9
    Minky,
    Don't read too much
    Minky,

    Don't read too much into your mothers' lack of seeming not to answer your questions.

    For me; being wisked into the hospital with what appeared to be one condition.(pneumonia), then later realizing that I also had stage 4 ovarian cancer (requiring immediate emergency surgery), was overwhelming as well as surreal especially finding myself in a hospital bed, whoozy from medications.

    For me...my clarity and understanding of my predicament did not surface until healing from the pneumonia, having emergency surgery, having a port implanted, having my 2nd chemo treatment and then it all began to sink in.

    Your mom just needs to absorb everything, its a lot and its scary.

    In the beginning, my husband, friends and family members had questions concerning my well-being covered. I thank God they did, because in retrospect; everything was a fog and there are still things that they (others)tell me occured that I just don't remember. So they asked a lot of the questions for me.

    Every doctor is different in how they relay the cancer news. Now that I have an established relationship with my oncologist; I realized she answered me in a manner that I could handle at that particular time. Truth, not too much projected details and yes slightly sugar-coated.

    Now on my visits, I go armed with a list of questions in which my doc gives me honest answers (sometimes brutally), but keep in mind this is a process that your mom and your family will go through and I am glad that she gave me the most pertinent answers first without loading more than I and my family could handle or absorb.

    You have every right to continue addressing your questions to her doctors. Many are prepared to have these discussions with their patients' families.

    God bless you and your mom and take this day by day.

    Sharon

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