Malignant ascites

BoyMom1 · August 2019

My mother has had bone Mets for 4 yrs. Scans in late June showed no progression. She started feeling more fatigued and had abdominal swelling. Dx in July with malignant ascites. She was to immediately start iv navelbine. After one tx She had to skip two weeks due to low blood counts. Counts returned to normal but ascites was getting worse. She was having it drained weekly. Her mo has delayed her chemo for a month now for various reasons. Several of which I disagree with. I feel this is only making the ascites worse. Mo finally has agreed to have catheter put in next week so she can drain it at home. Last week she went for chemo and mo delayed it again due to ascites and scheduling difficulties?!?!? I became very frustrated that she has now been without tx for a month. Mo told us that he sees no urgency in getting her tx because in his experience they will not help her. He said he would be willing to attempt chemo one more time next week (if my mother insisted), but basically feels he has done all he can for her. He believes she should go home and enjoy what qol she has left. I am in shock! I have read several threads where people have bounced back from this dx. Why is he telling her this? I have looked over her paper work and it's seems good to me. No organ involvement. All bloodwork is normal range with exception of sodium which is a little low(128). Mo said once sodium level drops he sees it as the end. Mom and dad have accepted what mo says. Mom doesn't want to attempt chemo now. She has given up. I want to respect her wishes, but this just seems so wrong. She is only 59! She has only had 3 lines of tx in 4 years! Maybe I'm in denial. Does anyone have any experience with this?

exbrnxgrl · August 2019

Hi BoyMom1,

I have no personal experience with ascites and only basic knowledge of them, however, a second opinion seems appropriate rather than just being written off. Would your mom agree to go for a second opinion?

BoyMom1 · August 2019

I have suggested it many times over the past month. She sees this as the end and has no interest in it. I feel so helpless.

Anotherone · August 2019

can you do the research about what are other possible options, find appropriate place to go , arrange all you can so that there is minimum legwork for parents to do ?

exbrnxgrl · August 2019

BoyMom,

Again, I have no great knowledge of ascites, but I am Stage IV and have been for 8 years. The dx was quite devastating, but I am still here. My QOL is good as I still work full time and lead a fairly normal life . I know we are all different and medicine has a long way to go for us stage IV folk, but there is a lot more hope now than even when I was first dx’ ed. A second opinion may not change things but it may offer your mom a broader perspective. Of course, as much as you love her, in the end, treatment decisions are hers. Take care

Anotherone · August 2019

PS. 4 years is a long way to go with it. Sooner or later people get tired from all the treatments and second/third/fifth opinions etc. Let alone tired from being illl and tired and sick and so on.

pajim · August 2019

BoyMom1, this is a contrary opinion in a way. I realize you love your Mom a lot. And you want her to live as long as possible. If you can convince her than a second opinion is the way to go. They may have other ideas. I don't know enough about what treatments your Mom has had to comment. Were all three lines chemo? Does she have triple negative cancer?

BUT. You are not the Stage 4 cancer patient. Your Mom is. She gets to make the decisions. You get to support whatever decision she makes. If she decides she doesn't want any more treatment, you get to say "Mom, I love you, how do we make you comfortable?"

There are two common scenarios with end-stage cancer. One is that the patient wants to stop treatment but the family doesn't. Oh my, the guilt! The second is where the patient wants to do everything possible and the family thinks its time to stop. That one can be easier but not by a whole lot. The happy medium is where everyone is listening to eachother.

I wish your Mom the best of luck and I wish you peace. I totally understand your frustration. I'm just not sure you can do anything about it.

BoyMom1 · August 2019

Thank you pajim for your response. I agree with you 100%. As much as I want her here with me forever, I know that’s not possible and it is not my decision. I’m not the one physically suffering and I would never try to make her feel guilty about her choice. I actually haven’t discussed the second opinion matter with her at all. I have in conversations with my father. Part of me believes that she has made her decision to stop tx due to being tired of fighting and sees no benefit of prolonging the suffering. But a part of me is scared that she has lost hope all because of this one mo’s opinion. And maybe some well understandable depression about the whole issue. I will support her choices 100%. I am only seeking advice because if there is realistic hope for her I could offer her some encouragement in her battle.

SHe has not had any iv chemo in the past 4 years. She has used femara, afinitor, and most recent verzenio with faslodex. She does not have triple negative bc.

Again, I appreciate your comments.

Cure-ious · August 2019

Boymom, From how you describe this, she has ascites but nothing showing up on a scan other than bone mets from a month or so ago?, she normally should be seeking another opinion and find out exactly what is going on. Perhaps the cancer has mutated to a different subtype, and a new biopsy would be in order, but the cancer should show itself on a scan. I would at least offer to go with her for a second opinion, and surely she is just feeling shocked and overwhelmed. Perhaps her personal physician can help you try to convince her?

grrifff · August 2019

BoyMom1,

I’ve had ascites since January. Paracentesis twice. During second drain a liver biopsy was done, this malignancy was cause of ascites. Had Pleurx catheter placed that day. Unfortunately got peritonitis was hospitalized for 3 days. Smooth sailing until mid-July got SBP-spontaneous bacterial peritonitis. Treatment 3 days again in hospital. On a prophylactic antibiotic now, no issues. I drain myself 2X day and have visiting nurse 2X week come to check site. I’m only 46 and definitely not ready to give up. Low sodium thing is scary as mine is slightly low. Never have I been told it’s the beginning of the end. Please let me know if you have any questions.

Jill.

BoyMom1 · August 2019

Thank you both! I just feel that something is just not right. Surely the mo has other test results and /or reasons for his statements. I am just so confused and this has all happened so quickly. I am sure I must not have all the facts. I don’t believe that my parents have hidden any test/scanresults or recent dx with me. They have been very open and up front about the mo’s grim prognosis. I will try to discuss things in more detail with my father tomorrow. They must be leaving out some important detail. I just don’t understand how she can go from active and normal in June to being so down and weak now. I am afraid that her tx has not been appropriate and that things are spiraling out of control quickly.

But of course I want to respect her wishes if she is truly choosing to quit tx. I would never try to guilt her into it. I just wonder if it has to be this way.

pajim · August 2019

Hmmm. So she's never had a chemotherapy for her mets. Has she expressed that she doesn't want chemotherapy? Or do her doctors think she's too weak for chemo? Because if one of the chemotherapies will knock down her mets, the ascites might recede also. I've never had them so I can't say. But there are stories from women who either live with them a long time, or have the right chemotherapy knock everything back to normal. I will say that chemo comes with it's own side-effects. And they can be nasty. I like to tell people that just because you've agreed to one dose of a medicine does not mean you've agreed to a second dose.

What about. . .having this conversation with your Mom? Tell her exactly what you told us. That you love her and will support her but are worried that she's stopping all treatment on one person's opinion. If you're talking only with your Dad, maybe something is not getting through in translation.

Malignant ascites

Comments

Categories