Has your oncologist or cancer team member ever downplayed side effect

@jwkelly72 Oncologists have the tough job of trying to do everything they can in order to save our lives. Unfortunately because cancer is a formidable force the disease requires an equally aggressive treatment. Most cancer chemo is designed to kill or inhibit fast growing cancer cells and it can’t always be selected. Many cells in our bodies are also fast growing cells so there can be some unintended collateral damage. But it is all that’s available to us now if targeted biologics aren’t a good fit.
I don’t really feel that oncologists downplay the side effects. They are pragmatic and let us know what to expect with immediate issues. But no one can predict who may or may not be susceptible to a secondary disease many years later. Most of us with cancer, without treatment, will pass on prematurely. So in some cases it becomes a risk/reward scenario. Live to fight another day…

If you’re in the position to require chemo, you’re already facing a life threatening or life changing condition. That’s a given… So the chemo may change your life for the better. I don’t think anyone is fond of chemo treatments but they can be absolutely necessary for some of us in an effort to rid our bodies of cancer cells and to buy us precious time. In my case, had I not gone through the rigorous chemo treatments and a bone marrow transplant I wouldn’t be here. The side effects, though unpleasant, were short lived. And those I did have were a very small price to pay for now being able to live a full and happy life. I’ve been alive 4 more years than I would have been. I’m now 69 and counting on at least 20 more years!

Keep in mind, one of the greatest side effects of chemo is the possibility that the chemo will keep us in a durable remission and give us many more happy years with friends and family…and hair grows back. ☺️

What options are in front of you if you don’t choose to receive the chemo treatments?

I believe these days doctors and nurses do not want to say anything they don't have to either because of indifference or making sure they cover their backsides. To leave out possible serious side effects is so wrong. If anything nasty happens then they go " go to the emergency room ." And would you risk death , permanent pain, paralysis for a treatment because I wouldn't and I m already half paralyzed. As for other options they always exist with proper research and your own experiments. The patient, victim , survivor should always be in charge of possible. And better to die if it happens bon your terms rather than others.

i have had NO hair loss after 28 radiation and 6 chemo treatments

I had chemo from December 1 last year-late this June and the only hair I lost is what I shaved. Not that I cared when you can clearly see I have cancer ( I weighed 95 pounds-105 for several months with a dying mummy face. ) Even now I'm barely 130,no real fat on me, port in my chest, feeding tube in my gut.

It sounds like you’ve had a rough road physically already. I am so sorry for that. But as an RN of 36 years, my husband has esophageal cancer and has just finished his chemo and concurrent radiation. The last week of it and the two weeks of recovery have been really very difficult. But I think we’re finally on the upswing. We were well informed of the side effects of chemo. My husband did lose his hair for the most part. But hair can grow back and although it turned white, we are looking forward to whatever color might come in. He’s 57 years old. He had brown hair with a little salt and pepper come into it before hand. He has lost 40 pounds but has recently gained five back. The doctors told us all about this. Some of the side effects that were weird like he doesn’t like the taste in his mouth, was remedied at best buy breath minutes. If my husband was nauseated, or throwing up, which only happened in the last week and the recovery week, we were given a couple different medicines for nausea, which helped.
It sounds like you’ve had a frustrating life physically already going into this. I am so sorry. I could feel your anger and frustration. It’s kind of normal. I’m sorry about your experience in the rehab hospital. As a rehab nurse, our frustration is that we are getting more medically ill patients now and it’s not about just getting patients moving and exercising so they can go home stronger. Hospitals are sending patients to us that need a lot of medical attention for multiple reasons. More than ever before. Many times we send patients back to the hospital because their bodies are not able to be challenged physically yet. Some patients are DNR and need to be respected for their choices if they do die whether that’s in our facility or an acute hospital. If they pass away in a rehab facility, we take it very hard. We don’t have the emergency equipment or doctors in house to care for a very critical patient. We try to revive them per standard basic life-support and get them sent to the hospital. If they are a DNR, we care for them with dignity and if their family is not there, then we notify them to come. Our facility waited for a family member to fly to California from New York in order to say goodbye to their loved one. If no family comes, we wait for the mortuary. We all care very much and are very saddened by it. We mean no disrespect. There are times when patients are waiting from the hospital to come to our facility and are slated to come, but we don’t have the staff to accept another patient unless another patient has gone home or is waiting to be picked up by mortuary( usually a rare reason) . We take everything into consideration. The patient in the hospital could be frustrated having to wait not knowing we have a situation in our facility that is very sad, but is delaying that new patient. We can’t explain this to the new frustrated patient because it is confidential.
I hope that the side effects that you’re experiencing will be resolved soon, and that with each one you find a solution. I am keeping a journal of nearly daily experiences that my husband is going through. Whether it’s doctor calls, doctor visits, his symptoms, each day or especially his victories each day. I titled it Our Cancer journey. It is so that we can see how far he has come, and taking note of very little victory. As someone else wrote to you in another response, we have to get through the Bad effects of chemo and radiation to kill off all the destructive cancer cells to come through the other side with survival. We try to keep our glass half full, and we do trust the Lord to get us through every moment. You can do this!

I'm sorry your husband has this cancer, been dealing with it for 2 years myself. The cancer doesn't bother me,the dysphagia doesn't,the vomiting, spitting up don't either the unknown side effects that I could get do. Hair issues don't matter , possible strokes, nerve issues, life threatening infections, breathing issues do and that's why complete info is a must for me and me making all the decisions (it is my cancer after all). As far as 33 years being wheelchair bound it saved my life just as God and Jesus save me. When I was on my 4th feeding tube surgery in a week I went DNR, held my cross in my hand under anesthesia and put my faith in God. Woke up and a wonderful priest was the first in my room. God is always in control and gives us all we need when we need it, takes us when it's time.

My surgeon is very vague answering my questions or won't provide any additional information unless I press him for it. I understand why but it's very frustrating. I get my information online and my family doctor.

Same here or my cancer team dismisses the risks. My last chemo was end of June with an allergic reaction that sent me to the emergency room. 3 weeks later I'm told the cancer maybe spreading and was told to go on Daxiltaxol. I was given a " your hair will fall out" as the big concern and given the drug information paperwork. I discovered online all the common dangerous side effects. Only deadly infections, permanent nerve numbing, damage and pain or for only weeks, months, years. I checked comments on users of it and found death or more suffering as common. I decided not to take the risk and and opting for herbals, spices as teas plus coffees and juices. So far so good. Will get my cat scan paperwork soon and see what that states. Not worried, have gained weight (no real fat) at 125 plus and feel decent despite having untreated stage 3 Esophageal cancer for a month. Best to you and blessings in your fight.

I have UTUC and was told from the very beginning that it's very aggressive and even after they removed my kidney and ureter that the cancer will return. I have had no chemo, radiation, or immunotherapy and I am fine with that. Why do any treatment when I am cancer free and doing fine for now. I have to be checked every 3 months for the next 2 years for sure. I am not going to worry about when or where the cancer is going to return. My oncologist/surgeon told me that it will more than likely return in my bladder. He is very open and direct with me and I love it! I wish that you could have the same with your doctor. My doctor goes into great detail about anything that is going on to make sure that I know what what to expect. That made me much more comfortable when he did my tumor removal and kidney and ureter removal surgery. I hope that you can get things worked out with your doctor so that you can feel more confident about your treatment options. I also hope that you get great results from your treatments! God bless! 🙏🤗☺️

Now that's a proper doctor, but I'm sorry that you have been carved up like that and more on the way. Blessings and peace to you.