No treatment or surgery?

Hi!
I'm sorry you have lupus and are in pain so much! That's sad that your son died. It's so hard when a loved one goes up to Heaven and you have to stay behind until you can be up there also and be reunited!

I think you are smart to have no treatments or surgeries. My husband made the decision not to get anymore care after he almost died from getting Keytruda infusions for lung cancer. He ended up with pancreatitis and was very ill. However, thanks to his primary care doctor my husband got to a specialist and was cured of pancreatitis. He still had lung cancer but decided to have no more treatments. The cancer doctor was not happy about his decision. The Keytruda infusions cost $25,000 per infusion and our insurance had just approved another 6 months of infusions. It was obvious that the cancer doctor cared more about the money than my husband. We changed cancer doctors and found a cancer doctor that cared about my husband's health and not the money! My husband had no more treatments and lived another 10 good years.

God decides who dies and when and no one else. I wish you the best!
I'll say a prayer for you.
PML

Thank you for sharing!!!! This gives me extra confidence in my decision ‼️🥰

Hello
I have a palliative care doctor and he’s so helpful. Don’t think of it as the end. He’s very helpful and always wants to help me be more comfortable giving me Ritalin for energy and Marinol for appetite. I feel really good. I’m so sorry you lost your son. I can’t even imagine the pain. Give yourself a big hug and be gentle on yourself.

Thank you 💜

asutton0144, I was really wanting to skip my Whipple surgery. I am 67 and my health is not good. I am in chronic pain, and it is not managed well. Mostly as I have a sickness reaction to most narcotic pain meds. And that really made Whipple recover difficult. If I could go back, I would not have the surgery. My mother is still alive, and she just thinks the doctors will make everything better. My sister had breast cancer and Chemo, and radiation killed all her cancer cells before surgery. Mom just thinks I should have any available treatment, and I will be cured. She is not the one that suffers though. I most likely will not have any chemo as I have no reason to hurt myself anymore. If my oncologist is not in step with palliative care, I know of at least one close by that advertises he is.

I suffered greatly having the Whipple surgery at the request of my mother and my brother. I feel I have done more than enough for them, and it is time to stop the suffering as much as I can. If the Whipple surgery removed all the cancer cells in me then I will have some years left it would seem. Most likely it did not as my tumor was 5cm. However long I have left I do not intend to fill it with sickness and suffering from Chemo.

This is a choice we make for ourselves. No one should make this for us. You should decide for you one way or the other.

@happyjack, You write a very moving letter. I agree with you that decisions about OUR medical care is up to us. I was faced with a similar decision. I have Duodenal cancer and had to decide between the Whipple or palliative care. The oncologist favored the Whipple and my family, a wife and two sons, were on the fence. After reading descriptions of the Whipple and people's experience before, during and after the operation, *I* decided on palliative care. My wife agreed with me and my sons were not convinced. In time they have accepted my decision. But even today, I have been self-assaulted by second thoughts: "Did I make the wrong decision?" "Could I change my mind?" "Is it too late to switch to the Whipple?" Both of us had to make a tough choice, and based on what we knew at the start, there was no right answer.

The best of luck to you - that's what we are hoping for after making these important decisions. It sounds like you are still at the beginning of a difficult path and there are more surgeries ahead. From what I read here and elsewhere, it is best to have a positive perspective. It MAY affect the outcome. It can't hurt. There are some success stories here and elsewhere that might be a good start. Avoid reading about the failures. Those are out there, too.

happyjack, keep us all in the loop with your story. I'm sure there are others here who are want to follow and hope for your success, too. Best of luck.

Thank you for your kind words and support. I get results from MRI on Friday.
I will definitely post the results and my thoughts.
I’ve worked as CNA for 29 years and seen so many people suffer because they
“ thought “ they had to do what the doctor suggested.
Anyways….. we all have a choice.

rfherald, I had my first visit with an oncologist. And I explained my not wanting to suffer through chemo sickness. He said he would not make me do that as he can place me on chemo that will not make me sick other than a bit of diarrhea. I take meds for constipation so that should not be a problem to stop the meds. I am still worried that he is not telling me the truth to get me on chemo. I read somewhere that chemo is 25k dollars a treatment and would be a money maker for the doctor. And the reason for them pushing it. Doctors do take an oath to preserve life but that can also be to preserve a source of income. After all, as long as we are alive, we are a source of income to health care. The only way we are not, is if we die. The home health nurse did back up the information on very low side effect chemo. I had thought that those cases were for people in good health and on trials and generally younger. I will find out. He has one chance, and I move on to someone else. It will still be a cause for pain for me as a port will need to be surgically placed in my upper right chest.

The oncologist was concerned that 9 of the lymph nodes had cancer cells in them. I was concerned about the tumor being 5 cm's. I guess it is the same concern as a large tumor means it has been around for a while and higher chance it has spread. The cancer cells in the nodes are evidence it has already moved out of the tumor. Blood work was done that day, and I have a PET scan on the 30th. I have read that a member on this site does not like the PET scan but prefers an MRI. The local hospital that found my tumor would not do an MRI on me even though I have had one in the last 10 years. And the reason for not doing the MRI was an injury that happened in 1981. This is going to make it difficult for me to get another MRI. I will do my best to follow the PET instructions and included diet for the best results. It seems that there is a chance that it will not find cancer that is present. On September 4th I see the oncologist again to go over the results.

Another surgery like the Whipple I had is not going to happen. The chemo port surgery is the most I will consider. And if the chemo becomes difficult it will be the last one for me. I really want to get back to feeling as good as I did before the surgery. I do not know if that will happen, but it is my goal.

For whatever treatment you and anyone with cancer decides I wish you all the best.

Well seen doctor today and he’s stating 3-6 months “ possibly “ a year.
Don’t know how I feel now 🤷🏾‍♀️ but I’m still adamant about surgery/ chemo .
NOT going down without a fight! Lots of prayers and Positivity!
Praying for ALL of us with this enemy within

Prayers & positivity do help. Although I am 74 now, I was diagnosed at the end of June 2022 and told I had 2-4 months without maybe 11 months with treatment. I did choose to get chemo & am still here at 26 months. Chemo is not easy, but things could be worse. I am hating the peripheral neuropathy and weight gain. Palliative care is my only option as the cancer metastasized from my pancreas to my lungs. Hopefully my CA19-9 will be back within normal limits & my Sept CT will continue with no new evidence of disease. I admire your choice. Each of us has to make the decision as to what and how we want to fight. I believe you can fight with prayer & positivity! Wishing you the best!