Advice for sister with uterine cancer mets lung and abdomen

aqua12
aqua12 Member Posts: 3
in Uterine/Endometrial Cancer #1
Hi I've been reading many posts on this site since my sister was diagnosed 6 weeks ago. You are all certainly an inspiration. I wish all the very best and continued good health.

I am concerned about my sister diagnosis and prognosis the more I read on many levels. My sister is 45 yrs old, prior to this in reasonable health.

She had a total hysterectomy 5 years ago when initially diagnosed with uterine cancer. I was surprised no chemo was offered but accepted this must be a good sign of confidence that Dr's believed had been caught early. However 6 weeks ago she was admitted to hospital with severe stomach pain. That was then we got the dreadful news that not only has her cancer returned, but metastases in both lungs, initially told liver, but now 'abdomen'.

My sister does not want to know anything about staging etc, which I find hard, but except purely as it is her right, and I want to support, not question or be seen to judge. However, she has been told surgery not an option, and hormone treatment (provera) has a reasonable proven record on reducing the tumours, more so than chemo. If the tumours don't respond then chemo will be offered but not considered as effective for her, which I don't understand.

I am struggling to understand why her treatment is simply hormone therapy. I can't help but see this as a negative sign, and I am worried that as she is not ready to face and question her illness, that perhaps she is not receiving the best possible treatment. Sorry if I sound negative, but I think I am so scared that we so readily accepted the fact that she did not need chemo after her surgery, and I can't help but feel that perhaps things may have been different had we been more informed then. I also feel that I need to do the 'research' for my sister as she is just going through the motions at the moment, I want to know my support is along the right lines in the longer term. It is clear from reading other post, than the level of knowledge amongst many here is superior to general sites. I would be so grateful for any honest thoughts, advice or comments regarding my sisters treatment, diagnosis or prognosis. We have lost three relatives to cancer this year, including our mum to breast cancer, I understand the strength needed to fight, and be positive, which is why I would value your opinion, that of the informed. Many Thanks in advance.

Comments

  • daisy366
    daisy366 Member Posts: 1,458 Member
    #2
    aqua
    It's hard to know what the doctors are thinking but I will try -

    I am on hormone therapy now. After a PET scan showed activity they biopsied area and then sent tissue samples out for analysis (called functional profiling or tissue assay). Many agents are tested against the tissue and the report tells which agents are most effective in killing the cancer. My doctor's philosophy is also to give the least treatment that gives the most benefit. In this case he recommended letrozole - generic for Femara - hoping that this would stop progression of disease. I am watched closely with monthly blood work. I will meet with him tomorrow and learn how this is working.

    Also, per my doc, if there is multiple areas of spread (like in my case), a systemic approach is better than surgery.

    If your sister is agreeable, I'd ask her to give your permission to ask these questions and get copies of her records. You could be her advocate and "secretary" (lucky her). I think you are a very caring sister.

    Caution: once mets in lungs they can go to brain. Make sure future scans check out the brain.

    Many prayers and blessings to you all.

    Mary Ann
  • paris11
    paris11 Member Posts: 159
    #3
    Aqua 12
    Hi Aqua,

    " I think I am so scared that we so readily accepted the fact that she did not need chemo after her surgery, and I can't help but feel that perhaps things may have been different had we been more informed then"


    I have the same regret - I was told I did not need chemo after surgery. I was thrilled and ran off to Paris. Eight months later the cancer was back in abdomen and liver.

    I immediately went to a different gyn-onc. I was treated with carbo/taxol. That was five years ago.

    My advice is simple and direct: TIME FOR A SECOND OPINION. Also, forget past mistakes. That's done.

    Connie
  • aqua12
    aqua12 Member Posts: 3
    #4
    daisy366 said:

    aqua
    It's hard to know what the doctors are thinking but I will try -

    I am on hormone therapy now. After a PET scan showed activity they biopsied area and then sent tissue samples out for analysis (called functional profiling or tissue assay). Many agents are tested against the tissue and the report tells which agents are most effective in killing the cancer. My doctor's philosophy is also to give the least treatment that gives the most benefit. In this case he recommended letrozole - generic for Femara - hoping that this would stop progression of disease. I am watched closely with monthly blood work. I will meet with him tomorrow and learn how this is working.

    Also, per my doc, if there is multiple areas of spread (like in my case), a systemic approach is better than surgery.

    If your sister is agreeable, I'd ask her to give your permission to ask these questions and get copies of her records. You could be her advocate and "secretary" (lucky her). I think you are a very caring sister.

    Caution: once mets in lungs they can go to brain. Make sure future scans check out the brain.

    Many prayers and blessings to you all.

    Mary Ann

    Thank you Mary Ann for
    Thank you Mary Ann for taking the time to respond, truly appreciated. I hope your meeting regarding your treatment has gone well today.

    I now understand why the hormone treatment may be considered a better option. My sister did have numerous scans and a lung biopsy before commencing treatment 4 weeks ago. However she is not due to meet with her doctors for another 8 wks, following another scan in about 4 wks. This confirms another of my fears - effectively no monitoring, or progress checks for 12 weeks - which seems such along time, given the aggressive nature of her illness. I really appreciate your comments as they have clarified some of my concerns. I am attending appointments with her, and feel I am reading what she is not from the pain management specialist, and the psychologist she is now seeing. She is more trusting of the medical profession than me, I understand I think, that she understandably and rightly needs to believe she can trust those involved in her treatment, and I don't want to add to her 'fears' by raising doubts, and pushing her to question that she feels she does not need to. She is also married, and therefore I do not feel I can act as her advocate directly, her husband is totally devastated by the news, and not coping well at present. I do however think I may need to at least, carefully start addressing the delay in any follow up. I also know that she has not had any brain scan.

    Thank you again for taking the time to respond, My thoughts and good wishes to you and your family.
  • aqua12
    aqua12 Member Posts: 3
    #5
    paris11 said:

    Aqua 12
    Hi Aqua,

    " I think I am so scared that we so readily accepted the fact that she did not need chemo after her surgery, and I can't help but feel that perhaps things may have been different had we been more informed then"


    I have the same regret - I was told I did not need chemo after surgery. I was thrilled and ran off to Paris. Eight months later the cancer was back in abdomen and liver.

    I immediately went to a different gyn-onc. I was treated with carbo/taxol. That was five years ago.

    My advice is simple and direct: TIME FOR A SECOND OPINION. Also, forget past mistakes. That's done.

    Connie

    Thank you Connie for taking
    Thank you Connie for taking the time to reply, truly appreciated. I am so sorry to hear that your experience is similar. I worry I am being paranoid due to other family illness in the last 12 mths, but you are right, I think my sis needs a second opinion. She (much to my dismay) has opted to return to her original consultant, the same who treated her initially, and only so recently gave her the all clear. I think a second opinion is absolutely needed, if only to increase confidence. I know I need to forget past mistakes, what is done is done. But mistakes are made to learn from, and I just cannot shake the doubts I have, something just feels wrong.

    I wish you continued good health, and Thank you once again for taking the time to respond.
  • daisy366
    daisy366 Member Posts: 1,458 Member
    #6
    aqua12 said:

    Thank you Connie for taking
    Thank you Connie for taking the time to reply, truly appreciated. I am so sorry to hear that your experience is similar. I worry I am being paranoid due to other family illness in the last 12 mths, but you are right, I think my sis needs a second opinion. She (much to my dismay) has opted to return to her original consultant, the same who treated her initially, and only so recently gave her the all clear. I think a second opinion is absolutely needed, if only to increase confidence. I know I need to forget past mistakes, what is done is done. But mistakes are made to learn from, and I just cannot shake the doubts I have, something just feels wrong.

    I wish you continued good health, and Thank you once again for taking the time to respond.

    aqua
    Hi again. The only monitoring now I am getting is my ca125 monthly which the doc reviews and would call me in if necessary. Is she getting her ca125 checked? For some it is a reliable marker and others not.

    I have a nurse that I can call and she acts as a buffer between me and doc. If your sis doesn't mind if you ask questions, get her written permission to talk to the nurse and set up phone consult and ask all your questions. This is definitely a complicated situation with husband and multiple practitioners.

    One thing that complicates this is the pain mgmt doc - pain is a symptom and if it is masked then some things may not be found without scans. Hopefully docs are talking to each other. Just my thoughts.

    In the end, Aqua, your sis and her husband are the ones that should call the shots. You are well meaning but can only do so much. Take care of yourself and pray the Serenity Prayer - "God give me the serenity to accept the things I cannot change, courage to change the things I can, and the wisdom to know the difference."

    Again. Request copies of records. Maybe when the dust settles some, her husband and maybe even your sis will read them and be able to formulate their own questions.

    God bless. Mary Ann
  • Double Whammy
    Double Whammy Member Posts: 2,832 Member
    #7
    daisy366 said:

    aqua
    Hi again. The only monitoring now I am getting is my ca125 monthly which the doc reviews and would call me in if necessary. Is she getting her ca125 checked? For some it is a reliable marker and others not.

    I have a nurse that I can call and she acts as a buffer between me and doc. If your sis doesn't mind if you ask questions, get her written permission to talk to the nurse and set up phone consult and ask all your questions. This is definitely a complicated situation with husband and multiple practitioners.

    One thing that complicates this is the pain mgmt doc - pain is a symptom and if it is masked then some things may not be found without scans. Hopefully docs are talking to each other. Just my thoughts.

    In the end, Aqua, your sis and her husband are the ones that should call the shots. You are well meaning but can only do so much. Take care of yourself and pray the Serenity Prayer - "God give me the serenity to accept the things I cannot change, courage to change the things I can, and the wisdom to know the difference."

    Again. Request copies of records. Maybe when the dust settles some, her husband and maybe even your sis will read them and be able to formulate their own questions.

    God bless. Mary Ann

    Stupid cancer!
    Aqua, I assume your sister had early stage, low grade endometroid adenocarcinoma (the "good" kind) since she didn't have chemo initially. I hope she's explored her original dx and staging now because that might help everyone understand more about treatment decisions made 5 years ago. The thing is, even early stage low grade cancer can come back. If nodes were clear, and it was confined to the uterus, chances are very very good that it won't and having chemo is not worth the risk. Often it comes back even when chemotherapy is used, especially for more aggressive and later staged cancers. There's just no guarantees.

    I wish there was more written for us in lay terms about gyn cancers. I'm also a breast cancer survivor and I've learned so much about breast cancer because there are so many excellent resources available. Some of this has helped me understand my endometrial cancer as well. But this group and the breast cancer group has been the most educational. Please keep coming back with your questions. Maybe your sister would also join?

    Some people don't want to know the details or be a part of the decision making for their treatments. That's not me and I'd venture to guess that it's not anyone on this board, either. We seek information in addition to support here. It's all so different for each of us, and yet we are all so alike.

    Hugs,
    Suzanne

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