Ask HN: What good sources of information on ovarian cancer treatments?

[cebert]

I don’t have a great deal of medical knowledge. My mother was diagnosed with ovarian cancer, and I would like to see if anyone here knows of good sources of information.

My mother had a full hysterectomy this week and the medical team believes they were able to remove all visible signs of cancer. Following recovery, she’ll likely start chemotherapy to help kill off any remaining cancer.

[fabiancook]

Publications like pubmed are generally a good source to read from, check the citations on the article & check its review status.

If you have an article that you found with a helpful summary but it doesn't have the full source, take the "doi" link to sci-hub to get the full source.

Try to stay away from any article on any site that doesn't have a research article referenced that has a doi number.

Do checkout discussion around the endocannabinoid system in relation to recovery & chemotherapy support.

When you get the details on the specific chemotherapy being done, you'll have a specific couple of chemicals to be able to search through... for example Gemcitabine and Carboplatin. Different kinds of cancers have a different sets of chemotherapy chemicals related.

I'll mention that I have a close family member with terminal lung cancer. Following the above we've been successfully treating his symptoms and have also reduced the size of the primary tumour along the way (It was non operable & no radiation could be done)

[nceasy]

Hey OP, in case you have a hardtime trying to download these articles from Pubmed, feel free to reach me nothingcomeseasy [at] protonmail [dot] com and I see if I can help. Wishing all the best to your mom!

[toomuchtodo]

Early diagnosis is key with ovarian cancer, so it sound like your mother was lucky to have had it caught in time.

You might consider asking her oncologist if they intend to use PARP inhibitors post chemo to help keep the cancer in remission. There are currently several promising clinical trials ongoing for immunotherapy protocols for ovarian cancer, so the goal would be to keep the cancer in remission until those are generally available.

Wishing the best, take care.

(Not a medical practitioner, bring questions and information to your mother’s doctors, and do not feel intimidated to ask questions based on your research)

[mjewkes]

This seems credible: https://ascopubs.org/doi/full/10.1200/EDBK_288015

[cebert]

Thanks! I’ll have to read up more on PARP inhibitors.

[omarhaneef]

Firstly, I am sorry to read that.

Secondly, if they removed all visible signs, that is great and very hopeful.

If my loved one had a serious medical condition, and there wasn’t a known cure — for instance if it comes back — I would look at the government database that lists current trials in the U.S. (assuming you live in the U.S) and then I would research each potential treatment in turn.

[youainti]

Clinicaltrials.gov is where those are recorded.

[mjewkes]

As fabiancook mentions, credible sources all end up on pubmed within a year or two of publication, so it's an excellent resource.

That said, Pubmed is an aggregator, not a curator. So you'll find a fair amount of crap there too. Also, there are ~600 results per year related to ovarian cancer, which is likely too much to meaningfully sift through.

The things that come to mind for me are:

- Try to get second, third, fourth opinions from well regarded oncologists at well regarded hospitals, ideally who specialize in ovarian cancer. There is a pretty big gap, especially in cancer treatment, between those who keep up with the latest recommendations, and those who use "still ok" recommendations from 5-10-20-30 years ago

- ASCO is the major scientific conference for oncologists. In terms of understanding what is cutting edge, looking through their material is useful. I would suggest reading what has been presented at ASCO and then taking that to your doctors / second opinions.

- If there are specific biomarkers associated with her cancer, understand those, and make sure you understand if there are latest recommendations specific to those biomarkers. These are the types of specific case information that a generalist oncologist might miss (e.g. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7998656/)

- Another place you might be able to complement / compensate your oncologist's care is understanding options for "cancer support" (chemotherapy support as fabian says). Basically, the faster you can recover between treatment sessions, the more drug you can be given faster, and the more cancer gets killed. Oncologists are often (but not always) more up to date with the latest chemo/immuno/surgery/radiological interventions than with the options for chemo support.

[godsfshrmn]

Gold standard we use in oncology are the National comprehensive Cancer Network - https://nccn.org There are guidelines for almost all malignancies and their standard methods of treatment. They are very detailed. They outline (many flowcharts) what to do on the second, third and sometimes 4th recurrence of malignancy.

You need to register for an account to view them, but it is still free I believe. You'll find out more than you would want to know there

[refurb]

I worked in the biotech space and this - NCCN (US) or ESMO (EU) guidelines are the place to start. Unless you're a very unique case, most doctors won't even consider cutting edge therapies until you've failed at least one of the more common treatments.

Sign up for a free account and download the guidelines. They are evidence driven and give you a sense of what the current standard of treatment is and how strong the evidence is. Not sure about ESMO, but NCCN even publishes a patient-friendly version now.

If guidelines treatments fail (which would likely take a while as there are multiple lines of therapy) then you're getting into the clinical trial space and you'd likely need to get input from someone in academics who is close to the space and does research. But major hospitals usually have "tumor boards" where the oncologists get together and go through challenging patient cases and make recommendations on next steps. But sounds like OP is nowhere close to that.

[jgoodknight]

Consider trying to get an online second opinion from a hyper-specialist doctor at a fancy research hospital. For my own recent medical foibles, I have found it extremely easy to get second opinions at any hospital because now consultations for illnesses that don't necessarily require a physical examination can happen online. Furthermore, records transfer has gotten pretty painless. So perhaps once you've found an interesting paper or find a specialist at a prestigious research hospital, try to get your mom an online consultation with them. It doesn't even have to be nearby you!

I wish you and your mother the best. Over 20 years ago my mother succumbed to Ovarian cancer but there have been so many advances in cancer treatment since then it's a much better time.

[amluto]

Merck Manuals (https://www.merckmanuals.com/) is a good starting point for most medical topics. You can tell it you’re a professional or a patient.

Uptodate can also be a good resource, but it’s not free.

[nextos]

* Look into recent academic reviews and the literature they cite as a good entry point: https://scholar.google.com/scholar?as_ylo=2019&q=ovarian+can...

* If you have sufficient funds, consider measuring circulating tumor DNA to ensure she has low numbers of cancer cells.

* If she gets into remission, sequence the tissue they extracted in the hysterectomy (DNA & RNA) and hopefully preserved in FFPE. Use to see the type of tumor.

[credit_guy]

My mother had some type of stomach cancer and got her stomach removed, and then she had chemo. She received a fairly modern drug (Rituximab), and I think this is probably what saved her life. This was 10 years ago, and she is doing fine right now, without any signs of remission.

In your case, the doctors will prescribe the best course of action. The chemo drugs are different, but you can expect 2 things: chemo will be rough, and her immune system will be weak.

One thing you should consider to prepare for the weakened immune system is vaccination. I for one am very pro-vaxx, but you should do your research. If I were in this position, I'd advise my Mom to get the latest Covid booster, and the flu shot. I'd look into pneumonia and shingles vaccines too.

My Mom got a herpes infection when she was doing chemo. That's not fun. Later on, she got shingles. This was years after the chemo, but it took maybe half a year to clear out. Things that are easy on a healthy person can become major nuisances for someone with chemo.

[cebert]

Great suggestion on getting an additional COVID booster. I’ll bring it up with her medical providers.

[pfisherman]

Maybe check out MD Anderson Cancer Center? I don’t have any specific knowledge of their educational materials, but they are one of the leaders in oncology in the US.

[sgent]

All good information listed here. Also know that most hospitals, especially larger ones, have a medical library / librarian who can help you and provide access to paywalled journals, books, and resources.