Tips, Advice & Insights for Stage IV Patients & Caregivers

My mother has had breast cancer since 2003. She was cancer-free from 2003 till 2014. She has had bone & liver metastasis from 2014 till she sadly passed away on October 26, 2017. In all probability she did not die of the cancer, but of liver cirrhosis. Our speculation is that she has had fatty liver, which over time started progressing into cirrhosis, and was further aggravated by the chemotherapy and the multitude of medications we gave her on daily basis. We did not know of her cirrhosis till after she passed away.

Throughout the past 3 years, I frequently visited this site because I always found first-hand insights about everything related to cancer and its treatments. I thank you all for the inspiration and indirect advice you provided throughout my mother's heroic battle. Now that my mother is sadly gone, it's time to give something back to this community of heroes. I've compiled a list of advice highlighting the most important lessons we've learnt from this challenging journey. Whether you're a patient or a caregiver, I hope this advice can benefit you in any way:

1. After you have undergone the initial chemotherapy & radiation, you might be given hormone therapy (pills) to take for years after that. Do NOT stop these pills. Again, do NOT stop these pills. Some oncologists advice the patient to stop the hormone pills when there's no recurrence after a number of years. If this happens, take a second opinion, or discuss the risks with the doctor. If you must stop these pills, do a regular short-period check-up after stopping the pills to make sure that there's no cancer recurrence. This is especially important to cancer patients whose cancer is hormone receptor positive, and whose original cancer has spread to the surrounding lymph nodes. My mother was cancer-free for 11 years after the initial surgery chemotherapy and radiotherapy. She then had a recurrence after she stopped the hormone pills as per the oncologist's advice. She coincidentally discovered metastasis to her liver and bones in her yearly routine check-up.
2. If metastasis has occurred in any other organs, always involve another doctor, besides the oncologist, specialised in the suffering organ e.g. if the cancer has spread to the liver, involve a hepatologist, etc. Do this even if the oncologist says that a specialised doctor isn't needed. I've discovered - the hard way - that most oncologists lack enough in-depth medical knowledge outside the domain of cancer. This limited knowledge is never enough to cover all the risks associated with metastatic cancer and its treatments.
3. Upon the appearance of metastasis you have 3 goals: a. Minimize the cancer spread and activity in the suffering organ(s). b. Stop the cancer from spreading to additional organs. c. maintain an acceptable quality of life for the patient, and avoid causing unnecessary damage to her as a result of the aggressive treatment(s).
4. If breast cancer spreads, it usually goes to 1 or more of these 4 organs: bones, liver, lungs and brain. Bone metastasis are the easiest of all. Brain metastasis aren't as terrifying as they sound, especially if they're discovered in the very beginning. They're usually treated with non-chemotherapeutic means; the most common of which is radiation. What I know is that they have a relatively low rate of recurrence after treatment. The priority are liver and lung metastasis. They're the ones that should be closely monitored and treated if they occur. This doesn't mean that you should panic at all. I know many patients that have been living with them for a great many years.
5. Keep asking your oncologist about the possibility of immunotherapy. It's the latest wave in cancer treatments, but it's still in the early stages of development. It's available as a treatment option for some breast cancer subtypes. Soon, it'll be available for all cancer patients. The good thing about it is that, unlike chemotherapy, it works by boosting the immune system to kill cancer cells, so it doesn't harm the body like chemotherapy does. Ask the oncologist frequently about updates regarding its availability.
6. Always question the oncologist's decisions and get involved as much as possible with the treatment process. To the oncologist, the patient is just another case. To you, the patient can mean the whole World.
7. Read the scans & lab tests thoroughly & if there's anything you don't understand, google it. You never know what the oncologist might overlook, or take lightly. Again, I've discovered this the hard way.
8. Always listen to the patient's feedback, complaints and symptoms; even if the scans, lab tests, and the doctors' opinion point otherwise.
9. Don't get too fixated on the cancer that you forget to pay attention to the rest of the body and its functions. My mother did not die of the cancer, she ended up dying from liver cirrhosis that her oncologist did not take seriously, and consequently failed to take address, or take any precautions regarding it (by switching to another chemotherapy that doesn't affect the liver & by decreasing her general medications), or even refer her to a hepatologist for a second opinion. I was too preoccupied with the cancer itself that I failed to notice the word "cirrhosis" in her scans, neither did I know what a cirrhosis was at the time. I only learned about it after re-visiting her scans after she passed away.
10. In the case of recurrence/metastasis, opt for alternatives to chemotherapy if this is possible e.g. hormonal therapy, targeted therapy and immunotherapy. Chemotherapy is the least preferred type of therapy, so avoid it if ever possible, especially in the early stages of recurrence/spread. However, if there's no other alternative, go for it. In the case of localised cancer (cancer that hasn't spread) the initial chemotherapy and radiotherapy are highly recommended to minimise the chances of cancer spreading.
11. If you have symptoms that might suggest something wrong with the liver, the doctor will ask you to do a liver functions blood test. Even if the liver functions turn out normal or close to normal, and you have persistent symptoms, I would advice doing an ammonia test in addition (which isn't a part of the typical liver functions test). Just to be on the safe side. Again, I learned this the hard way.
12. Try as much as possible to let the patient pursue a near-normal life. Try not to remind her of her illness as much possible. Convince her that cancer is nothing but a group of cells that have gone stupid.
13. Pray a lot, but don't get fixated on a certain outcome. Pray for healing & be certain that God will answer your prayers, but at the same time open up your acceptance to all possible outcomes. Surrender the entire matter to His will.
14. Read the following books: Radical Remission by Kelly Turner & Anti-Cancer by David Servan-Schrieber. Both books available in paper back, iBooks & audiobooks. Also, watch the documentary Heal - available on iTunes.
15. The patient's psychological well-being is equally-important as her physical well-being.
16. Don't worry too much, nor be at ease too much. Find a fine balance between the two extremes.
17. Administer anti-cancer supplements, and anti-cancer foods whenever possible. This is especially important when the cancer's activity is low.
18. If there's anything specific you want to ask, reply below and I'll be glad to help. I have a LOT of cancer insights that might come in handy.
19. Finally, despite everything that has happened, I still think that cancer is definitely not an automatic death sentence. Again, most probably my mother didn't die of cancer. God is above all; if He wants to heal someone, nothing can stop Him from healing them. So never lose hope, and stay strong. Each & every single one reading these words - patient or caregiver - is the very definition of a hero. God be with you all.