A friend called today and asked for advice. I said this one’s over my head, and we should ask the wider community. Here you go.
Our family has a very new and serious situation, and are reaching out to the e-patient community for advice. Here is the situation:
- For several weeks, a morbidly obese woman (5’9″, ~250 lbs.) in her mid-70’s has been in a great deal of pain, centralized in her abdomen, leading to an impaired ability to think clearly or make decisions.
- Late Friday 5/27 she was taken to the ER of a large research hospital, where they discovered that she has ascites (fluid in the abdomen), and they tapped 2 liters of fluid from there, estimating that there were an additional 2 liters remaining.
- Blood work shows non-hematopoietic cells circulating in her blood, indicative of metastatic cancer. Analysis has yet to come back from the lab (so we don’t know if cancer cells are GI or GYN in origin).
- CT scans and trans-vaginal ultrasound reveal multiple tumors in the peritoneal cavity and on the omentum. The tumors vary in size, with the largest being 5 cm in diameter. Largest tumor is on or near small bowel.
As we say, definitive results have yet to come in to help determine the type of cancer, the extent of it, or even the location of the origin of the cancer — although it is suspected to have originated in the reproductive system, specifically in the endometrium or ovaries. Right now, however, this is just speculation. So we’re in the dark as to the nature of the cancer, and thus how best to treat it.
And that leads to our questions.
Doctors at the research hospital where she was admitted are recommending surgery in a few days — currently scheduled for Friday 6/3/11 — to remove tumors. Doctors also expect some form of chemotherapy to follow once removed tumors have been fully analyzed and staged.
Surgery is anticipated to be tricky due to a large ventral (belly) hernia repair in the past with reinforcement of the abdomenal wall with a large piece of mesh. It seems the surgery to remove tumor tissue would be done through the mesh, and then the mesh repaired.
We would dearly appreciate knowing if others have been in similar situations — and if so, where they were able to receive successful care (in particular for metastasizing cancer that is gynecological in origin, and/or discovered due to something like ascites), as well as institutions where they (or loved ones) felt they were well cared for.
The woman lives roughly between New York City and New Haven, CT, but has family in the greater Boston area. We are also looking for recommendations for best approaches, best practitioners as well as places to have such cancer treated. Brigham & Womens? Dana Farber? Yale New Haven? Elsewhere?
Our family has dealt with life-foreshortening disease before, but we would also welcome and appreciate any other relevant advice that others who have been in similar situations might offer. The ascites is rebuilding quickly, so time is (of course) of the essence.
e-Patient Dave says
Trisha Torrey of Every Patient’s Advocate tweeted in reply:
“She needs a private patient advocate who understands the ropes: http://www.AdvoConnection.com Search is free, zipcode based.”
(That’s one of Trisha’s enterprises, all of which I heartily approve.)
Laura Newman says
There are a few ways that I would approach this:
1) look on http://www.pubmed.com for leading researchers in this type of cancer. Often, they operate on the most cases, which can be important when things are complicated.
2) consider support groups. For gyn, if you are in NY, I’ve heard many women like Gilda’s Club. Maybe ACOR is fine, but I have not had direct patient experience.
3)She sounds like she is really in between New Haven and NY. I would go for convenience because she’ll need a lot of appointments, plus definitely a teaching hospital. It doesn’t sound like this is so esoteric that you have to go to any one of those cities.
e-Patient Dave says
Hi Laura – thanks – as I said, I know nothing about this area, nor does the family – what’s the basis for saying “doesn’t sound like this is esoteric”?
Re Pubmed, I don’t think they can look yet, because the type of cancer hasn’t been identified, but I imagine you mean once it is.
have they done any kind of imaging for liver and other lesions? surgery is usually to determin origin of cancer, ovarian type can be treated very well in some case. By determining where it originates (biopsy) the right chemo treatment can be decided.
The complication comes with the difficulty of the surgery. could this surgery be done by laparoscopy (camera) first? Is the patient sure she wants chemo ? the proposed treatments are only options. the other option is palliative (treating pain and other symptoms)
This discussion needs to be done between the patient and the doctor. Good luck and so sorry about the bad news
Ovarian Cancer Survivor says
If the already scheduled surgery determines that the cancer is Ovarian, I can tell you from my own experience that Beth Israel Deaconess in Boston has an excellent program in gynecological cancers. The doctors and nurses are excellent clinicians, are very compassionate, and I never felt that I was treated as a ‘disease’ rather than a person.
My surgical onocologist was Dr. Christopher Awtrey, and the medical oncologist that supervised my chemo was Dr. Stephen Cannistra, and as far as I can tell they’re both still there.
Which is not to say that you couldn’t find excellent care closer to home. Staff at a research hospital will tend me more more aware of current treatment options than those at a community hospital, so if you’re pleased with the care she receives during surgery, then it makes sense to investigate continuing care there. In my experience, the key is to find a doctor that you she/you can partner with and trust.
The Ovarian National Cancer Alliance also has a good website where you can learn more about ovarian cancer and and treatment options.
Best of luck.
Patient's Daughter says
Thanks everyone, and of course Dave!, for your thoughts. Good suggestion Trish, although I’m not sure we need an official advocate as I have a medical background as a hospital physical therapist. Oncology is not my forte but I am a quick study with research and communicate easily with physicians.
Milo, they have not specifically imaged the liver other than what would show on an abdominal CT scan. However, blood work liver function tests are normal. So that is a good sign.
The source of the ascites (which causes nausea, a great deal of pain, bloating, and appetite suppression because of all the collecting fluid) is thought to be the tumors irritating the peritoneum (lining of the abdomen). So the tumors need to be removed or the problem will be ongoing; it will also give her the best chance of beating the cancer. She is otherwise basically healthy and so is thought to be a pretty good surgical candidate despite the mesh issue.
Sounds like the best way to find the right chemo is by removing all of the tumor material and then sending off sections for analysis. Didn’t get the sense that this was possible with the scope – – plan is to remove ovaries, likely uterus, omentum (the fat pad that covers the organs), and also possibility small bowel resection depending on whether the largest tumor is attached to the bowel or not. I think that’s just an awful lot through a scope; I did ask and was told that was not recommended for the situation. My mom, who as I said, is surprising healthy – – no meds, no blood pressure or cardiac issues – – does indeed want the best care, surgery, chemo, whatever can be done to try to beat this.
Thank you Ovarian Cancer Survivor for sharing your experience of excellent care at Beth Israel. I hope you are feeling well these days. One thing that concerns me about Yale New Haven is that the surgeon operates at an affiliated hospital 2 days of the week, which leaves one communicating with his 2 fellows on those days. I guess that is the downside of the cutting edge teaching hospital set up. I have concerns about continuity of care with 3 people involved though. What was your experience at Beth Israel? Did Dr Awtrey round on you each day that you were in the hospital there? If fellows rounded in his stead, did that work out well for you? Also, I am interested to know that a separate medical oncologist supervised the chemo. I guess that must be common – -but I hadn’t considered that. So thanks. I will ask about the set up at Yale.
Thanks everyone for the links to resources. I’ll have some reading to do.
“..multiple tumors in the peritoneal cavity and on the omentum..”
what is the doctors’ approach to remove all? That would be a really major surgery and given the condition of the patient belly sounds difficult and would add risky. Moreover, patient in mid 70s +obese this spells about circulatory problems, respiratory problems. (other co-morbities??)
An older person with major surgery if she stays in bed for more than 3-4 days risks to develop serious lung problems. Have they offered any other options? e.g. treat ascites, chemo to reduce tumors, etc.
Interestingly, in all but a few decision problem setups the option to do nothing doesn’t come up. Again I see this pattern arise. Everyone is so eager to get in there and cut up the woman and poison her afterwards.
Also, the discussion is rationalized and objectified. I haven’t heard if she has any wishes herself about the situation (she is supposed to be not thinking clearly because of the pain, but I am almost beginning to think her environment doesn’t like what she is saying).
My first view would be to start palliative treatment in such a way that she is able to come to grips with the fact that there is a very real possibility of having weeks or months left, and decide how to go about it. A family running around for solutions instead of caring would be the last thing I want to see around my bed.
e-Patient Dave says
Hi Eduard – I don’t think we’ve met before. What’s your experience been in this area?
Re the option of doing nothing – I’m not sure I understand where you’re coming from. This is a fairly empowered family, and I’m pretty sure they’re well aware of that option. (That is, on that option they don’t need advice.) In fact, all we know is what the family did ask.
I imagine when your time comes your family will indeed know your wishes. That’s good.
I do know this family is well aware of the possible gravity of the situation, so I don’t think it’s fair, informed, or appropriate of you to suggest the family isn’t caring (“family running around … instead of caring”). In fact I’m pretty sure you don’t know what you’re talking about on that scale, unless you know them, in which case a public blog is hardly the place to discuss it.
I don’t mean to dismiss the family’s concern or sincerity. I certainly haven’t implied nor intended to imply that the family isn’t caring. She is in the care of a research hospital, and yet the family is looking around for more and better options. I rather think of the family of being overly concerned. In such cases there is a risk of tunnel vision. Having worked in a research hospital (Netherlands, Amsterdam area) for over ten years I have seen the pattern.
I was ticked off by the fact that the message starts with “our family” and further on only mentions “a woman”. Is she a (grand)mother, an aunt, a sister, a neighbor, (former) personal servant, family friend?
The message continues in serious medical lingo, and doesn’t mention the person’s situation, life history, outlook on life, religious affiliation, social environment, and the person’s wishes with regard to DNR, terminal care etc. But they do find room to say she has “an impaired ability to think clearly”. To me this is a telltale warning sign of communication problems between the patient and the family. Of course, the reason for that may be entirely on the patient’s side. But do I need to be informed of the fact?
Simply getting the best medical care possible may not be what a person wants, and it isn’t what I would want. I am not just a body. And personally I certainly don’t want my family to decide about my treatment. I am not a fan of families. Being a battered and abused child, I always get annoyed at any signal of a family overriding a family member’s wishes.
Again, I may read too much into it, but it is my way of reacting to the problem presented, especially the format of the presentation, and I think that feedback could be useful as well. If “the family” has already considered it well and thorough, so much for the better.
Oh and by the way, when my deeply demented aunt was diagnosed with metastatized breast cancer at age 79, no treatment was initiated other than palliative measures. She died three weeks later in her sleep.
Bev M.D. says
Reading kgapo’s comment prompts me to try again. I am a retired pathologist. The situation you describe appears most likely to be either ovarian cancer spread to the peritoneum, or something called primary peritoneal carcinoma, which essentially behaves the same as ovarian cancer which has spread to the peritoneum. It is my understanding ( I am not a surgeon) that the first surgery in such cases is critical as it is paramount that all visible tumor be carefully dissected and removed. This procedure best enhances the chances of longer survival, when combined of course with adjuvant therapy.
If the tumor is found to be coming from elsewhere, such as the colon, then this careful dissection won’t help the patient and will not be undertaken. Most likely the surgeon will inspect all the abdominal and pelvic organs to find the primary site and he/she may send a frozen section to the pathologist during surgery, to help confirm the primary site and guide the course of the surgery.
This situation calls for an experienced gynecological oncologist (surgeon). It appears you already know this. As far as the mesh goes, the gyn onc may choose to have a general surgeon in on the surgery to help if the mesh is going to be a problem
I hope this helps. Good luck in your ordeal. This tumor is treatable.
Patient's Daughter says
Thanks for your thoughts, everyone. Eduard, as I stated in my prior post, “My mom does indeed want the best care, surgery, chemo, whatever can be done to try to beat this.” She has reasons for wanting to fight it and made them clear to me. I am also her health care agent and POA; she has seen me in action helping to usher both her husband and her father out of this life with as much grace and dignity as possible. So she trusts my style and judgement. I have to believe that it is a great comfort to her to know that she will be looked after similarly if she can no longer make decisions for herself.
Bev, you are right on target! It is StageIIIC primary peritoneal cancer (final cytology pending). As much tumor as possible was resected, the omentum removed, also resection of large intestine with anastamosis. Big surgery. Some tumor adhered to small bowel had to be left behind for fear of perforating the bowel but carbo/taxol chemo has been recommended to try to address what cancer remains. Think the surgeon would like to have removed ovaries/uterus too but it was not too bad there and the trauma would have been greater. We are just praying that the small bowel is not obstructed. Clear liquids yesterday went pretty well but no gas bubbles moving through the system– so no food allowed yet (8 days post op).
The biggest upset so far has been inadequate pain control. I have fought like a mama bear to try to get a plan that makes sense and have found the hospital staff initially unable to grasp the extent of my mom’s pain issues (severe hip arthritis, surgical, neuropathy), then unable to put together a plan that made sense, then unwilling to grant my request for a pain management consult. Guess they thought they should be able to figure it out themselves on the hospital floor. They finally worked out a plan that made sense – – only to have the night nurse ignore the order to wake my mom to medicate through the night because the nurse on duty thought it would be better to let her sleep!!! Took my mom until noon the next day to get the pain back under control. I networked with some other families on the floor and got the number of a good pain management MD in palliative care and called him myself yesterday. The hospital floor physicians asst finally agreed it was an idea that made sense given likely long term pain control needs and said she would put in a consult when I spoke to her later that day.
The cancer center at the hospital is new and I think they just don’t have the protocols and systems worked out properly yet and maybe not fully staffed up and experienced. There have been other issues besides pain management as well.
For myself (and my mom too), I would like to be able to just BE with my mom instead of directing her care because of poor coordination at the hospital. Inadequate pain control is inexcusable in my opinion. My mom didn’t have too much choice about facility given the emergent nature of her problem but I wish she were at Brigham & Womens or Beth Israel. The cancer does sound treatable. 80% get remission as I understand it, though the cure rate is only 10%. Please pray for relief from pain and competent, kind staff for the time we have left.
e-Patient Dave says
What a powerful message. You clearly are on top of this situation, fully engaged in the case.
I hope you’ll find the energy and the time to speak clearly with the hospital’s management about these issues, to help the next families in line. I understand that time was of the essence, but out of curiosity I wonder where this hospital sits in the government’s Hospital Compare ratings.
Now that you know the type of cancer, are you interested in finding a patient community? I looked at the communities I know, including ACOR, and didn’t find one yet for peritoneal cancer.
Keep the faith, and get rest as much as you can…