I need intelligent information about an advanced recurrent cancer.
July 30, 2014 5:53 PM   Subscribe

My mother has another recurrence of the triple-negative breast cancer she's been dealing with for the last 5 years. In looking at the PET scans from the latest rounds of biopsying and testing, I have questions and I am not sure where to turn.

I do have permission to speak with her doctor, and I will be asking her as many of these as I can next week, but I am the type of person who just needs to take in a lot of information and see the whole picture. I need to find a knowledgeable resource besides the doctor because there is no way I can interrogate her as much as I want to.

Here is an example of the type of information I am looking for:
The PET scans mention bone lesions more than a year ago that have increased in hypermetabolic activity in the last 5 months. One of them was biopsied and no cancer was found in that sample. What could make a bone lesion - initially without any hypermetabolic activity - develop an FDG level of 2.6, then 3.7, but not be cancerous? (She's got a bunch of these in her spine, hip and jaw, all following the same trajectory.)

One of the frustrations I have in investigating her treatment options - as they were outlined by her doctor while awaiting biopsy results - is the unwillingness of doctors to discuss how "treatment" is not the same as "cure". By the time a patient has an advanced, recurrent, triple negative breast cancer, there is no wiping it out. There's just staving off the next round of malignancies. I don't know how to get information about what her realistic options are so I can help her evaluate what to do.
I looked at one study of triple neg breast cancer patients that evaluated 2 different chemo cocktails: one that had 2 drugs, and one that had 3 drugs. The patients who had the 2-drug cocktail had an average survival rate of 13 months, and the patients who had the 3-drug cocktail had an average survival rate of 19 months.
Like, I can see how no doctor seems to want to come right out and say, "You likely won't live two years and you'll be vomiting for a good part of it," but how do I get real information?

What I do NOT want: support groups, treacly sentiment about how She's a Fighter and Will Beat This, ((((((hugs)))))))), and any post written by someone who refers to their family members as DH, DD, DS, etc. I need actual information - high level, non-WebMD information - about how metastases develop, how different treatments affect them, and realistic outcomes.

Does anyone have any idea where I should look?
posted by 8dot3 to Health & Fitness (9 answers total) 4 users marked this as a favorite
I am going to point you to what I consider the best resources for some of the info that you are asking. I am not going to type out the actual numbers, etc., just because (I know this sounds odd), I have read enough askmeta and the average person doesn't want this in my opinion and I don't think it should be here. But since you do, I will point to the places to find it.

One of the questions that you are getting at is survival.The best resource to date for the US is published by surveillance, epidemiology, and end results program (SEER). You search by tumor type, here is breast cancer. The section that you look at is survival by stage. You use the word advanced, I am assuming stage III or stage IV. IF it is stage IV, it is mesastatic, and for the purposes fo that chart, distant. This is epdemiological data and it is data from 1975-2011 (I am saying this because depending on the tumor type, things can change every few years).

To make a decision about treatments, my assumption would be that the oncologists will be making their decisions according to the best evidence out there. There are published guidelines for this. I would take a look at the National Comprehensive Cancer Network (NCCN) guidelines. These are the most up to date, evidence based, and a panel of experts reviews the evidence. It is free to get the guidelines, although you might have to register your email or something. If you want what the clinician uses, then at the NCCN website, go to NCCN guidelines on the left and on the pulldowm menu pull guidelines by treatment site. I actually think it would be better for you to start with guidelines for patients, which is also within the guidelines panel. AS a footnote here, category 1 is usually what the entire panel recommended as having the best evidence at this time.

Once you know the likely medications, there are usually published prescribing information that you can find for each drug. IT should list things like the incidence of adverse events and the severity (if it doesn't, these are all published in medical journals). The research for this can be massive, so I would start with: What is the recommended treatment for someone with stage X?

If I were in your shoes, I would periodically ask a clinician, "What would you do if this were you or your loved one?" because .... there are studies indicating that a clinician will just give medications, therapies, while they themselves might not chose the same -but that question can pull people out of it.

I probably already have references saved that describe metastasis, etc, from journals such as the New England Journal of Medicine. If you would like, memail me. I am not going to do tons of research(because this can take hours/days/weeks, especially for breast cancer), but if you find an article or two that you would like access to, I can probably grab a copy for you. Over the years, I have saved info (and have links for basic continuing medical education) websites that will go into the most recent data in great detail - so if you want places to look, I can send you that info, too.

But I would start with the NCCN guidelines before going down the rabbit hole.
posted by Wolfster at 6:44 PM on July 30, 2014 [7 favorites]

To be frank, I'm sorry to say I think you're going to have a hard time finding information quite as specific as what benign conditions increase metabolic activity multifocally in the spine. (I am guessing, here, but maybe rapid osteoporotic changes secondary to postmenopausal cancer treatment might cause such lesions?)

That said - on the whole, I find most UK and Australian health information sites more specific than their US equivalents. (If you use NCI, go to the health professional version for specifics, e.g. this) Breast Cancer Care UK on secondary breast cancer (the factsheets are still less specific than what you want but give you an overview of the options). Cancer Australia. Cancer Research UK. Macmillan Cancer Support. The Komen Foundation's pretty terrible but their website's not bad and is reasonably straightforward and untreacly about metastatic disease.

The question about how to handle doctors who are oriented around curative treatment when the goal is prolongation of life while maintaining quality of life is a tricky one. It will help if you clarify to the docs (maybe out of your mother's earshot, depending on how she's handling her diagnosis) that you have accepted that treatment isn't curative (even if maybe you haven't, entirely) so that they don't think they have to talk around it? Mind you, it's habitual for a lot of doctors to be as delicate and positive and curative-oriented as possible, and even when it's in the best interest of the patient and family to be bluntly focused on slowing disease progression and on palliation, the docs may not be able to overcome habit without a lot of reminders. It sucks, but there it is.

I get that you want to be free to focus on the necessities here, and don't want to spend your time on sentimentality with strangers, but I hope you will accept my sympathies and well-wishes. This sounds pretty rough, and, as an epidemiologist having lost a parent to a very aggressive cancer, I really feel for you.
posted by gingerest at 7:02 PM on July 30, 2014 [2 favorites]

Interestingly, I did a quick PubMed search and found this paper entitled "Increased 18F-Fluorodeoxyglucose Uptake in Benign, Nonphysiologic Lesions Found on Whole-Body Positron Emission Tomography/Computed Tomography (PET/CT)". It goes through all the different systems, including musculoskeletal, and elucidates several different kinds of lesions, including a few that are common in complex oncology patients. For those who don't feel like reading a dense scientific paper on the subject: inflammatory processes also cause increased FDG uptake, and some cancer treatments increase the likelihood of inflammatory lesions on the skeleton.
posted by KathrynT at 7:09 PM on July 30, 2014

Response by poster: Okay so already mefites have provided me with more solid leads that I've been able to dredge up on my own. I've got some reading to do and will check back in later on.
You guys seriously are the best.
posted by 8dot3 at 9:01 PM on July 30, 2014 [6 favorites]

Advancedbc.org is another good resource.
posted by Johnny Wallflower at 9:43 PM on July 30, 2014

IANYD (or your mother's)... All biopsies depend on the ability to actually take the right tissue. It's not a perfect process (although the radiologists usually do pretty well). Sample size can be an issue, as well as ease of access to the coops site. We had a patient a few weeks ago that we sent for brain biopsy because of an infection and the cultures came back normal because the physician taking the biopsy could only get right next to the site. What I mean to say is that she may need repeat biopsy, either at that site or another, to really find out whether there is metastatic activity in the bone lesions showing up on the PET.

It may not be worth taking another biopsy - that will depend on your mother and what her oncologist thinks. What I will recommend is establishing with a palliative care clinic now if one is available. Not hospice - palliative care. These are doctors who work to make sure that symptoms are manageable and that comfort is maintained throughout her treatment. They can also help make the right referrals when it is appropriate.
posted by honeybee413 at 8:08 AM on July 31, 2014 [2 favorites]

I am the kind of person who would obsessively comb PubMed for this kind of information and quiz the doctors about it--and this is exactly how my colleague whose husband has metastatic melanoma is reacting--but you may find that you don't have time for that kind of searching and deep reading.

One option that you might want to look into is to see whether the hospital or clinic where your mother is being treated has a medical library. If so, a lot of times the medical librarians have someone assigned to work with patients (a consumer focused librarian rather than a doctor/AHP focused one) and let me tell you, medical librarians are *fabulous* at finding out this kind of information for or with you. If she happens to be receiving care in Houston, please let me know and I can put you in touch.
posted by librarylis at 6:53 PM on July 31, 2014 [1 favorite]

Um ... how does your Mom feel about this bold quest you're on? Does she really, truly share your aggressive pursuit for information or does she look at it in a different way?

I understand your need to dig down deep into the medical side of it all - that's the way I'm made, too - but from previous experience with my own dear friend I urge you to be sure that's what your Mom wants, too. My friend finally worked up the courage to tell me, in so many words, to knock it off and leave it to the doctors - she was resigned to leave it to fate/the gods/the doctors, even though I wasn't at all - and what mattered is what SHE needed, not what I needed.

I wish you both the best.
posted by aryma at 1:06 AM on August 2, 2014

Response by poster: I wanted to provide feedback and respond to some of the questions and responses.

My parents are both completely on board with any research I want to do - they asked me to come with them to her oncologist appointment this week armed with questions. They like having someone else there to make sure all of the right questions get asked, to make sure we get copies of all of the tests and to take good notes. Neither of them comes from the 'trust the doctor' mentality at all. When my dad wanted me to go to her oncologist appointment last fall, he wanted me to be familiar with the mechanics of a PET scan. While a normal person would have just trusted me to just google it and read about it on Wikipedia, he sent me a paper called "PET/CT Standardized Uptake Values in Clinical Practice and Assessing Response to Therapy," and quizzed me on it in the waiting room. (He's an engineer.) (And yes, I do know that I am my father's daughter.)

The NCCN website - hell, just even the "NCCN Clinical Practice Guidelines in Oncology" for breast cancer is just a stunning amount of info. Holy god. And exactly what I was looking for, as was KathrynT's paper on FDG uptake values. I've barely begun to crack gingerest's list of links and have never even heard of The Cochrane Collaboration so I'm still reading, downloading, taking notes and composing questions, but already I feel less adrift in my ignorance.

I also appreciate the suggestions - both on the post and in memail - I've gotten on getting the doctor to provide less couched, more realistic information. I think gingerest's pretty on the money about doctors trying to be curative-focused. I got a suggestion to ask the doctor the average life expectancy of potential treatments versus life expectancy of not treating it. I just could not figure out how to word that one without coming off all, "So how long does she have, doc?"

I wanted to apologize for coming off grar-y in the last paragraph of my post. I swear I am not normally all EMOTIONS BAD DATA GOOD. I just needed info and everything I was googling was giving me forums of cancer stories and it was just gutting me. (In general, cancer makes for depressing evening reading and stirs up some horrific fucking dreams.)

I'll be posting some more links, etc, that I dredge up in my research later on after I collate a good list for anyone who comes upon this question later. Thank you all again for the links and leads, and for the offers of help.
posted by 8dot3 at 6:33 PM on August 2, 2014 [1 favorite]

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