Please Help: Mom is Now Stage IV - what next?

runwithloki

Hi all,

My family got very bad news today and I'm so incredibly frustrated by the doctors, I'm hoping that you all can help direct me with some possible next steps. My mom was diagnosed with Stage IIIC (Grade 3) uterine cancer one year ago. We knew this was bad but she is relatively young (a very fit 67), in great shape and had a fantastic, positive attitude. She had a full hysterectomy (3 out of 19 lymph nodes were cancerous), completed 6 rounds of chemo last summer (and sailed through with very few side effects), followed by 28 rounds of external radiation (much harder on her system than the chemo, from day 1). Before the radiation, they did a scan and found another cancerous lymph node, which they surgically removed prior to beginning radiation. It's been a tough year but she's been quite a trooper and has been determined to fight it with all she's got.

Since completing radiation (around Thanksgiving), she's been dealing with an on-and-off pain in her lower right side. She's gone to several doctors over the past month, including her internist, a colon specialist and her radiologist, and all have said, "hmm... don't know... just keep taking your probiotics." The radiologist actually commented, "I'm not sure what it is but I do know cancer and this is definitely not cancer."

Two days ago her pain worsened so she went to the ER. A CT scan revealed something around her appendix and she was initially diagnosed with appendicitis, before an on call surgeon decided to wait and consult with my mom's other doctors the next day. Long story short, they attempted an exploratory surgery today to figure out what it was, and it appears to be a cancerous mass around her appendix. They also noticed a few spots on her liver. They took biopsies but didn't remove the mass because the cancer surgeon wasn't there.

Now what?!! I'm so frustrated by the doctors and by the fact that they went ahead and did what turned into a major surgery today without a cancer surgeon there who might've been able to try to remove what they found. Because it's a holiday weekend, we're in a 4-day limbo before getting a chance to consult with the oncologists and so now I'm trying to figure out what we should even ask once we do have that chance. Is it likely that they'd go back in soon to surgically remove the mass on her appendix, or will they have to wait a certain amount of time before they risk that?

What kind of treatment options does she have to help control these metastases to her liver (and possibly elsewhere)? I've heard hormone therapies mentioned on this forum but don't know much about them- are there certain hormone therapies that we should ask about? Or other chemotherapies that she should try? (She did 6 rounds of carboplatin/paclitaxel). I don't want to bombard her body with destructive therapies (she's already down to 98 lbs from the radiation) but I know that she wants to do what she can to fight this thing.

Any suggestions of what I should look into and/or ask the doctors about would be much appreciated.

Many thanks,

Stacey

HellieC

There are still treatment options

I am so sorry to her about your Mum's recurrence.  But please take heart - there are still treatment options out there.  If your Mum is still fragile after the radiotherapy, then they may well suggest hormone therapy, but they will decide that based on the type of cancer she has.

If it receptive to oestrogen or progesterone (meaning it uses these hormones to feed itself and grow), then there are a few different hormone therapies that they can try and if one doesn't work, then they can try another.  Some are designed to stop the body producing oestrogen or progesterone, so in effect they starve the tumour.  Others are designed to block the receptors on the surface of the tumour so that they can't feed on the hormones.  The most commonly used anti oestrogen hormone therapies seem to be Femara (letrozole) Arimidex (anastrozole), Aromasin (exemestane), which are all a class of drug called aromatase inhibitors.  There is also Nolvadex (tamoxifen), which works in a different way.  Common progesterone based hormone therapy seems to be predominantly Megace.

There are also chemo options.  If it is at least 6 months since your Mum had the carbo/taxol combo then they could potentially try it again but they are more likely to move onto something else with an easier regimen if you Mum's body has taken a bit of a hit.  There are chemos which can be given weekly, but in smaller doses, so the immediate effect on the body is less but the overall dose over time can be higher.  One of the other chemo drugs that they might suggest is called Doxil.  But there are also others and I am sure that the other ladies on this board can tell you of there experiences.

But, overall, please take heart and don't give up - there should still be options for your Mum.

Helen

Clouth

My mom too

My mom is 77 and was diagnosed with stage 3c last summer. She finished carbo taxol in January, then had her scan which showed mets to three areas, one of which is her spine. They assured me that the mets are inoperable, although some could easily be taken out not the spine one. So they put her on doxil, which she started Thursday.

runwithloki

HellieC said:

There are still treatment options

I am so sorry to her about your Mum's recurrence.  But please take heart - there are still treatment options out there.  If your Mum is still fragile after the radiotherapy, then they may well suggest hormone therapy, but they will decide that based on the type of cancer she has.

If it receptive to oestrogen or progesterone (meaning it uses these hormones to feed itself and grow), then there are a few different hormone therapies that they can try and if one doesn't work, then they can try another.  Some are designed to stop the body producing oestrogen or progesterone, so in effect they starve the tumour.  Others are designed to block the receptors on the surface of the tumour so that they can't feed on the hormones.  The most commonly used anti oestrogen hormone therapies seem to be Femara (letrozole) Arimidex (anastrozole), Aromasin (exemestane), which are all a class of drug called aromatase inhibitors.  There is also Nolvadex (tamoxifen), which works in a different way.  Common progesterone based hormone therapy seems to be predominantly Megace.

There are also chemo options.  If it is at least 6 months since your Mum had the carbo/taxol combo then they could potentially try it again but they are more likely to move onto something else with an easier regimen if you Mum's body has taken a bit of a hit.  There are chemos which can be given weekly, but in smaller doses, so the immediate effect on the body is less but the overall dose over time can be higher.  One of the other chemo drugs that they might suggest is called Doxil.  But there are also others and I am sure that the other ladies on this board can tell you of there experiences.

But, overall, please take heart and don't give up - there should still be options for your Mum.

Helen

Thanks, Helen

Thank you, Helen, for offering some words of hope. Right now the situation seems pretty dark, although we are still waiting to meet with my mom's oncologist after some additional test results have come back. I'm trying to do some research and give my dad some specific things to ask the docs about, so this is very helpful. I'll look up the drugs you suggest and have my dad ask the doctors. I'm so frustrated that they went in and did a pointless surgery - they didn't attempt to resolve the issue (mass on her appendix) and now she has to recover from surgery on top of everything else that she is dealing with! I'm also not sure how soon they'll be able to start any kind of chemo, because I know she needs to heal a bit from her surgery first.

Thanks again. I appreciate you responding to my post.

Stacey

runwithloki

Clouth said:

My mom too

My mom is 77 and was diagnosed with stage 3c last summer. She finished carbo taxol in January, then had her scan which showed mets to three areas, one of which is her spine. They assured me that the mets are inoperable, although some could easily be taken out not the spine one. So they put her on doxil, which she started Thursday.

Sorry to hear this

Thanks for responding. I'm sorry to hear that your mom is in this situation, too. It's so frustrating to go through the recommended chemo regimen, only to find that the cancer has still managed to spread. Where else did it metastasize to? Did they give you different treatment options or was doxil the clear choice? What kind of side effects does it have, do you know? I am trying to research different treatment options so that my dad can ask some specific questions when he meets with her oncologist (hopefully tomorrow or soon thereafter).

Best wishes for you and your mom-

Stacey

Clouth

runwithloki said:

Sorry to hear this

Thanks for responding. I'm sorry to hear that your mom is in this situation, too. It's so frustrating to go through the recommended chemo regimen, only to find that the cancer has still managed to spread. Where else did it metastasize to? Did they give you different treatment options or was doxil the clear choice? What kind of side effects does it have, do you know? I am trying to research different treatment options so that my dad can ask some specific questions when he meets with her oncologist (hopefully tomorrow or soon thereafter).

Best wishes for you and your mom-

Stacey

Thanks

It metasized to a few locations in her abdomen and to her thoracic spine. I think because it got to her spine, that's why it is inoperable. I do ask questions but in this last meeting I didn't want to ask anything that would upset her. Doxil was the only option givin to her. Maybe some palliative radiation as things progress.  She has another issue which may play into that. Her kidneys have been up and down in terms of there function. They monitor that with blood tests during chemo. Her first chemo was cancelled because her kidney function was so bad. They chalked it up to all the antibiotics she got during a post op infection. But then the kidney function de-stabilized again, so they took her off of her blood pressure medications (changed them, really).

 

Side effects, not too bad. No aches and pains, no flush face, no neuropathy, things that she experienced with carbo-taxol. It will make her tired, and it could cause a rash on the palms of her hands, the bottom of her feet and in her mouth. It doesn't always happen, we're praying it doesn't for her.

I am wondering if I should get a second opinion, or talk to one of the doctors on the phone to get a better idea of why there aren't more options. I don't know....

 

runwithloki

Clouth said:

Thanks

It metasized to a few locations in her abdomen and to her thoracic spine. I think because it got to her spine, that's why it is inoperable. I do ask questions but in this last meeting I didn't want to ask anything that would upset her. Doxil was the only option givin to her. Maybe some palliative radiation as things progress.  She has another issue which may play into that. Her kidneys have been up and down in terms of there function. They monitor that with blood tests during chemo. Her first chemo was cancelled because her kidney function was so bad. They chalked it up to all the antibiotics she got during a post op infection. But then the kidney function de-stabilized again, so they took her off of her blood pressure medications (changed them, really).

 

Side effects, not too bad. No aches and pains, no flush face, no neuropathy, things that she experienced with carbo-taxol. It will make her tired, and it could cause a rash on the palms of her hands, the bottom of her feet and in her mouth. It doesn't always happen, we're praying it doesn't for her.

I am wondering if I should get a second opinion, or talk to one of the doctors on the phone to get a better idea of why there aren't more options. I don't know....

 

Doxil

Clouth,

Doxil has been recommended to my mom as well. Yesterday she started her new combo of Carbo + Doxil, to be given once every four weeks. I really hope this combo does something to shrink her current tumors, as the main one (on her appendix) is already causing her pain.

How is the Doxil working for your mom? Is she also getting it once every four weeks? Does she have any pain from her metastases and if so, has the Doxil had any noticeable effect on that?

 

Thanks-