Stage IVb cervical cancer; told nothing can be done- no chemo, surgery, radiation...Please help.

Dilemma
Dilemma Member Posts: 4
in Gynecological Cancers (other than ovarian and uterine) #1

Hi all,

I was hoping some of you might be able to give me some advice as I'm feeling pretty frustrated and overwhelmed right now.

My mum was diagnosed in late December 2011 with stage III cervical cancer after she had a severe hemorrhage.

She was sent to Peter Mac, a cancer specialist hospital, and was told that because of the size of the tumor (5cm+), the location and the fact that it had spread to the nearby lymph nodes that surgery was not an option and instead she was scheduled to have 6 weeks external radiation, a course of brachytherapy and then 6 weeks of half dose chemo. The doctors said that it was going to be a challenge but that it was treatable.

Unfortunately my mum is heavily into the New Age lifestyle and doesn't really trust in conventional medicine, so she only had the external ratiation and then opted to persue so called "alternative treatment".

She found a doctor who was into complimentary medicine and was given massive doses of IV Vitamin C, she did reiki, reflexology, meditated, saw a woman who claimed to use ancient Amazonian herbs and "faith healing" to rid the body of cancer... in other words she wasted valuable time searching for the mythical magical cure.

The radiation had stopped the bleeding and mum was feeling really good and, thanks in part to her denial and the lies of an ~alternative healer~ she was convinced that the tumor was gone and that she was completely cancer free.

Fast forward to this Xmas and it was obvious mum was really, really sick. I hadn't seen her in months and I couldn't believe how unwell she looked- it was shocking, she looked like an 80 year old woman, she was so thin and frail.

2 days after Xmas my sister took mum to hospital where they discovered she had septicemia, an ulcerated, infected colon and a perforated bowel. In addition to all that the cervical tumor was bleeding again.

She was admitted to the colorectal cancer ward and was pumped full of antibiotics to get the infection under control so they could operate. A week later she went into surgery where they fixed her bowel and created a stoma so her colon could recover. They also inserted a stent into one of her kidneys and, unfortunately, discovered the other kidney was no longer funtioning. Over the next few days she had several MRI's, a CT scan and at least one PET scan to determine where the cancer was and what the options were.

Then last Wednesday mum and my sister met with the treatment team and were told that the cancer was inoperable. Not only that but chemotherapy would not be effective, nor would radiation (because she had already had a course) and that there were simply no viable treatment options left. They admitted my mum into the palliative care unit overnight and told my sister that we are looking at months.

Mum is currently staying with a friend and is due to meet up with the palliative care team over the next week or so if she remains stable, but my sister thinks she may have to go into a hospice or back into hospital soon. Apparently just walking from one room to another is enough to leave mum exhausted and while she's eating again it's not enough and she is not gaining weight.

I am heading down in a few days to spend some time with mum and my sister has warned me that she looks considerably worse than she did at Xmas- she doesn't want me to get upset and cause my mum any distress with my reaction.

Now I understand that mum lost her chance of full remission when she refused to complete her treatment last year, but I don't understand why chemo can't be used to at least slow down the progression of the cancer, or why they can't do a full pelvic exenteration or god only knows what else.

I have read through the posts here from women with stage IVb cancer and they almost all mention having chemo to slow the progression of the tumors. So why would someone not be suitable for chemo? I don't understand.

I just feel like surely there's something that can be done, even if it just means extending her life for another 6 months.

Can anyone please shed some light on this? Is there a point where there really is no point in pursuing any treatment?

I just can't stand the idea of giving up, of not even trying no matter how slim the chances.

I don't want to lose my mum, please tell me there's some hope, somehow.

Emma Cry

 

 

 

 

Comments

  • ccfighter
    ccfighter Member Posts: 476
    #2
    Get a second opinion.  Stage

    Get a second opinion.  Stage 4b means the disease has spread outside the pelvis and so a pelvic exenteration would not be performed because it would not be curative.  Chemo may slow the rate of growth, but it may not.  Perhaps they have not suggested chemo because your mom is too sick to handle it right now.  Perhaps if she gets a little stronger?  Prayers for you and your mother.  Let me know if you have any other questions.

  • Dilemma
    Dilemma Member Posts: 4
    #3
    ccfighter said:

    Get a second opinion.  Stage

    Get a second opinion.  Stage 4b means the disease has spread outside the pelvis and so a pelvic exenteration would not be performed because it would not be curative.  Chemo may slow the rate of growth, but it may not.  Perhaps they have not suggested chemo because your mom is too sick to handle it right now.  Perhaps if she gets a little stronger?  Prayers for you and your mother.  Let me know if you have any other questions.

    Thanks for your reply.
    Yes, I

    Thanks for your reply.

    Yes, I understand that the cancer has mesastatized and is now in other areas- I guess I was thinking she could have the exenteration and have other bits cut out too- I know people here have had parts of their livers and lungs removed, so I thought it could be an option to basically excise the areas with obvious tumors and then have chemo to tackle any micrometastates.

    I have also read up about the ideo of metastatic disease vs oligometastatic disease where the metastatis is not yet systemic and is considered to be in a transitory state. SBRT (stereotactic body radio therapy) is apparently quite effective in these situations.

    I also read a paper about a study of recurrant stage IV cancers involving the pelvis here;http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3141526/

    The study deals specifically with recurrent cancer involving the pelvis that were deemed inoperable. Their conclusion was as follows;

    "We report a series of 16 patients treated for lateral pelvic recurrences in the proximity of iliac vessels. The one-year local control rate was 51.4% according to RECIST criteria with a median follow-up of 10.6 months. The overall median survival after CyberKnife treatment was 11.5 months and 25.7 months after diagnosis of the pelvic recurrence. It seemed that the treatment delayed local disease progression in all cases considering the rapid rate of progression commonly observed with these lesions. In addition, it provided quality of life benefits by improving pain control in four patients based on self-reports. Tolerance of the technique was excellent. No grade 3 or 4 toxicity was observed. The toxicities described were essentially of digestive nature with one anorexia, some nausea and vomiting. There were no persistent urinary or gastrointestinal toxicities observed. Overall the feasibility of this technique was good."

    Mind you, we're in Melbourne, Australia and I'm not sure if SBRT is available here.

    I've also read about biological, targeted and hormonal therapies that are used in treating metastatic disease, usually used in conjunction with chemo, surgery and/or radiation therapy but, of course, it's all dependent on things like the size, location and number of metastatic tumors. And there's ablation too.

    I guess I'm just struggling with the idea that there comes a point where nothing can be done. The oncologist has said that they may be able to use radiation in a palliative setting to treat pain if it occurs but that's it.

    Unfortunately I don't know where the cancer has spread to because mum didn't want to know, but she's had to have a stoma created as her colon was ulcerated and her bowel perforated, plus one kidney is shot, so I assume it's involving some major organs. My sister also mentioned that the lungs might also be involved.

    Are there limits to how many organs can be involved in terms of treatment? I mean, if it is right through her can't they target each area and then move on to the next? Or is that too much stress for the body?

    And yes, mum is very weak at the moment. She only had her surgery a week or so ago and she was extremely sick before that. She is exhausted just walking from one room to another. And she is extremely underweight so we think she may need to go into a hospice, at least until she gains some weight and gets a bit stronger.

    So maybe the chemo would be too much. But then again, she's dying anyway, so what has she got to lose? It either helps or she just keeps dying...

    I think I am just finding it hard to believe that there comes a point where there are no more options, no matter how drastic or invasive they may be. Surely there's always something that they can do, even if we only get a few more months? Or is there really a stage where too much damage is done or the tumors are too numerous or...?

    Thanks again for your help.

    Emma

     

     

  • ccfighter
    ccfighter Member Posts: 476
    #4
    Dilemma said:

    Thanks for your reply.
    Yes, I

    Thanks for your reply.

    Yes, I understand that the cancer has mesastatized and is now in other areas- I guess I was thinking she could have the exenteration and have other bits cut out too- I know people here have had parts of their livers and lungs removed, so I thought it could be an option to basically excise the areas with obvious tumors and then have chemo to tackle any micrometastates.

    I have also read up about the ideo of metastatic disease vs oligometastatic disease where the metastatis is not yet systemic and is considered to be in a transitory state. SBRT (stereotactic body radio therapy) is apparently quite effective in these situations.

    I also read a paper about a study of recurrant stage IV cancers involving the pelvis here;http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3141526/

    The study deals specifically with recurrent cancer involving the pelvis that were deemed inoperable. Their conclusion was as follows;

    "We report a series of 16 patients treated for lateral pelvic recurrences in the proximity of iliac vessels. The one-year local control rate was 51.4% according to RECIST criteria with a median follow-up of 10.6 months. The overall median survival after CyberKnife treatment was 11.5 months and 25.7 months after diagnosis of the pelvic recurrence. It seemed that the treatment delayed local disease progression in all cases considering the rapid rate of progression commonly observed with these lesions. In addition, it provided quality of life benefits by improving pain control in four patients based on self-reports. Tolerance of the technique was excellent. No grade 3 or 4 toxicity was observed. The toxicities described were essentially of digestive nature with one anorexia, some nausea and vomiting. There were no persistent urinary or gastrointestinal toxicities observed. Overall the feasibility of this technique was good."

    Mind you, we're in Melbourne, Australia and I'm not sure if SBRT is available here.

    I've also read about biological, targeted and hormonal therapies that are used in treating metastatic disease, usually used in conjunction with chemo, surgery and/or radiation therapy but, of course, it's all dependent on things like the size, location and number of metastatic tumors. And there's ablation too.

    I guess I'm just struggling with the idea that there comes a point where nothing can be done. The oncologist has said that they may be able to use radiation in a palliative setting to treat pain if it occurs but that's it.

    Unfortunately I don't know where the cancer has spread to because mum didn't want to know, but she's had to have a stoma created as her colon was ulcerated and her bowel perforated, plus one kidney is shot, so I assume it's involving some major organs. My sister also mentioned that the lungs might also be involved.

    Are there limits to how many organs can be involved in terms of treatment? I mean, if it is right through her can't they target each area and then move on to the next? Or is that too much stress for the body?

    And yes, mum is very weak at the moment. She only had her surgery a week or so ago and she was extremely sick before that. She is exhausted just walking from one room to another. And she is extremely underweight so we think she may need to go into a hospice, at least until she gains some weight and gets a bit stronger.

    So maybe the chemo would be too much. But then again, she's dying anyway, so what has she got to lose? It either helps or she just keeps dying...

    I think I am just finding it hard to believe that there comes a point where there are no more options, no matter how drastic or invasive they may be. Surely there's always something that they can do, even if we only get a few more months? Or is there really a stage where too much damage is done or the tumors are too numerous or...?

    Thanks again for your help.

    Emma

     

     

    It is extremely frustrating

    It is extremely frustrating to not be able to direct ones own care.  I run into this myself.  I am a recurrent cervical cancer patient that had a lung tumor and an abdominal wall tumor that popped up about 6 months after treatment.  Both of these were able to be surgically removed and am waiting to start more chemo and radiation.  

    I understand how frustrating this disease is and the incurrable and untreatable scenario not making sense.  My only suggestion is to do what feels right to you and your mom.  If she wants to fight this than find a doctor who is willing to try.  Clinical trials may be an option and there are a few out there that are using immune therapy and vaccine therapy to try and slow down the cancer. And though it may seem like if they cut it all out she would be ok, or at least ok for a little while, most doctors think the recovery rom these major surgeries diminishes the quality of life of the patient and the disease progresses anyway.  Cancer is awful.  I hope that your mom gets stronger and is able to fight this.  (((hugs))))

  • Dilemma
    Dilemma Member Posts: 4
    #5
    ccfighter said:

    It is extremely frustrating

    It is extremely frustrating to not be able to direct ones own care.  I run into this myself.  I am a recurrent cervical cancer patient that had a lung tumor and an abdominal wall tumor that popped up about 6 months after treatment.  Both of these were able to be surgically removed and am waiting to start more chemo and radiation.  

    I understand how frustrating this disease is and the incurrable and untreatable scenario not making sense.  My only suggestion is to do what feels right to you and your mom.  If she wants to fight this than find a doctor who is willing to try.  Clinical trials may be an option and there are a few out there that are using immune therapy and vaccine therapy to try and slow down the cancer. And though it may seem like if they cut it all out she would be ok, or at least ok for a little while, most doctors think the recovery rom these major surgeries diminishes the quality of life of the patient and the disease progresses anyway.  Cancer is awful.  I hope that your mom gets stronger and is able to fight this.  (((hugs))))

    I'm so sorry that you are

    I'm so sorry that you are also having to go through such a difficult situation- I can't even begin to understand how frightening it must be :(

    Unfortunately I don't think mum wants to do whatever it takes... She didn't treat it properly in the first place and now she doesn't want to know where it's spread to. I know it's ultimately her body and her choice but it also affects those around her immensely. I want her to fight- I've sent her links to this site so she can read stories from others with similar diagnoses and how they are managing, but she's still against the idea of chemo, which I just can't get my head around.

    What's worse, one of the "alternative therapists" did a so called "psychic healing" on mum and told her she was cured and told mum NOT to go for her 6 month check up...what sort of person does that?! So there's a lot of anger in me about all of this because she had a chance a year ago to have the treatment and she didn't and now they're saying there's nothing else they can do.

    I hope you do brilliantly with your treatment and that it's not too taxing on your mental and physcial wellbeing- fighting so hard for so long must be exhausting.

    Emma

  • ccfighter
    ccfighter Member Posts: 476
    #6
    Dilemma said:

    I'm so sorry that you are

    I'm so sorry that you are also having to go through such a difficult situation- I can't even begin to understand how frightening it must be :(

    Unfortunately I don't think mum wants to do whatever it takes... She didn't treat it properly in the first place and now she doesn't want to know where it's spread to. I know it's ultimately her body and her choice but it also affects those around her immensely. I want her to fight- I've sent her links to this site so she can read stories from others with similar diagnoses and how they are managing, but she's still against the idea of chemo, which I just can't get my head around.

    What's worse, one of the "alternative therapists" did a so called "psychic healing" on mum and told her she was cured and told mum NOT to go for her 6 month check up...what sort of person does that?! So there's a lot of anger in me about all of this because she had a chance a year ago to have the treatment and she didn't and now they're saying there's nothing else they can do.

    I hope you do brilliantly with your treatment and that it's not too taxing on your mental and physcial wellbeing- fighting so hard for so long must be exhausting.

    Emma

    Than you Emma.  And good luck

    Than you Emma.  And good luck to you and your mother.  I truly hope you both find peace in what ever decision she makes.  

  • tresew
    tresew Member Posts: 2
    #7
    Update on you mum

    Hi Emma, can you tell me (us) how is your Mom. I'm in a similar dilemma and could use your opinion or advice

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,359 Member
    edited August 2017 #8
    tresew said:

    Update on you mum

    Hi Emma, can you tell me (us) how is your Mom. I'm in a similar dilemma and could use your opinion or advice

    Dear tresew, Emma (Dilemma)

    Dear tresew, Emma (Dilemma) has not be logged in to CSN since January 25, 2013 so she may not reply.  I don't know what happened but I just want you to realize why you may not hear from her. 

    I would like to add I think have changed since 2013 so please find a gynecologic oncologist and see what they can come up with.  In the meantime, maybe one of the other lovely women will come along and add something to help.

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