Trying to understand

malbin0259 · May 2016

Hello everyone;

I guess I statrted off in the wrong group, I hope someone can help my confusion. My wife had a small orange size mass removed from her colon a month ago, the pathology came back saying the tumor was cancer (20 of the 24 lymph nodes came back cancerous as well). The Oncologist stated she has stage 4 cancer and once she heals from her surgery we would start chemo. His plan was to approach the cancer with very aggressive chemo treatment, which consists of Leucovorin, Fluorouracil and Oxaliplatin and 4 th drug but not sure what it is, sorry. At the time he stated the cancer most likely has spread to other organs but we will have a better clue once a PET scan is done.

Before I get to the PET Scan I need to go back to her surgery, the surgeon advised us when she removed the tumor which was located where the Large Intestine meets the small intestine at the caecum, she noticed the following. One my wife had numerous cysts on her liver but felt they were benign; she had a white lining on her stomach, not sure if it was cancerous and she removed 24 lymph nodes to be tested. One last thing she felt she got the entire tumor around the intestine.

Now we have moved up to the Pet Scan, when the results came back the oncologist said it was very positive, it appears her cancer was localized and it did not spread, the liver had 21 cysts and they were all benign, she had to unknown masses one in the upper chest the other in her intestine, the results came back could be cancer or nothing, the PET Scan could determine what they are, the doctor stated most likely nothing. He stated she still had some cancer in the lining of her intestine and small cancer around her aorta, but felt chemo will handle what she has. I asked since she received such a great PET Scan, why are you still saying she has stage 4 cancer, He said because the size of her tumor and there is a small patch in her intestine lining. He said she will still have the same chemo treatment. Her treatment is every other week for 6 months. She has had one treatment. It last about 3 and half hours with 3 different types of drugs, but one of them was more of a steroid. She also had to wear a fanny pack with a pump which pumped more chemo in her for 48 extra hours.

Just went to doctor today for follow up and blood work. My wife had her first treatment last Monday and she has had very little side effects, only minor fatigue. Her blood today came back with WBC at 15.2, which the DR said not to bad, Neut% was 67.4 and Neut# was 10.3, lymph% was 14.3, mono% was 14.8 and mono# was 2.26. Now I only listed what came back outside the normal limits. I do not know what these mean, except the doctor says they are fine and nothing to worry about. I just wish I knew what these mean and if I should be alarmed. He said she is doing very well and after 6 months she will beat this and will be 100% cancer free. One, I love his enthusiasm but I do not think any of us know yet, but I hope he is right. Two what I have read and talking to many people who have been diagnosed with stage 4 colon cancer it is not as rosy as the oncologist is making this sound.

Please don't take this wrong I love my wife and I want her around another 30 years ( I forgot to say she is 66 years old) but I just want to make sure we are being told the truth and if there is anything else I need to be looking out for. Please help me understand what I am looking at and maybe I am not asking the right questions to the Oncologist. I hate my feelings and I want to get them under control. I need to work but I do not want to leave her side but I know I will have to. But some days I am sad and cry, somedays I am mad, others I am depressed, and others I am just worn out. I think if I had a better understanding I may eliminate some of these feelings. I hope someone has an answer to help me…

Noellesmom · May 2016

First of all

It is important to trust the oncologist.

Get a second opinion if you do trust this doctor. If you are at a larger cancer treatment center, treatment was probably determined by a group of doctors.

Ask the doctor all the questions you need answered: my husband's oncologists had excellent nurses who were great to talk with.

As for your feelings and their control: you have dealt with a lot in a relatively brief time. Be gentle with yourself.

malbin0259 · May 2016

Thank you for your input. To be honest I really like my wife’s Oncologist but the main factor here is she trusts and loves him and it does not matter what I think and feel. I know he is doing what is best for my wife and everyone I talk to says he is one of the best but he is always 100% positive, he is never negative. He said being positive is the best medicine for my wife, which is probably true.

As for the size of the practice, if not the largest practice in Arizona, it definitely is the second largest. You are right he did mention the team chose what the best chemo approach was for my wife. As for the nurses they are always very supportive and will answer 95% of your questions, but there are some they say we must ask the doctor.

Overall I know they are looking out what is best for my wife, but what is so confusing to me and no one will answer or address is the initial results of the pathology report after her surgery when they told us she had stage 4 and it has spread. Then after the PET Scan they came back and said her cancer was localized but I am not getting a straight answer or in my opinion a new path or recovery for her recovery. To me if approach “A” treatment was for when they thought cancer was elsewhere, but found out it was actually different, then treatment “B” should be altered to fit the less aggressive cancer. Also he stated he was waiting for one more result to see about the aggression of the cancer, when that came back he said the cancer was not the aggressive type, but would not go over the report and never posted it to her online chart. I bring these things up to my wife but she gets upset at me and says he is her doctor and he knows what is right and all I am looking for is the negative or bad information of her cancer. She asked me to keep this to myself unless I am positive. So now I do this and try not to be negative about anything pertaining to her cancer.

As I said she is having little to no side effects, a little fatigued and now she is getting the face and body acne, which the doctor said is a sign the chemo is working. In the beginning he and the nurses said the full effect of the chemo most likely will not kick in until after her 3rd or 4th chemo treatment, now they said since she did not have many side effects after the first treatment she can expect the same side effects for the remaining 6 months. This is what my wife wanted to hear which is good for her. I want her to be positive but I am reading first chemo treatments is not a good baseline to use for how a chemo patient will be health wise through the process, it could take between 2-4 treatments to know exactly how you will be effected. I hope she has little to no side effects this would be great for her.

As for me I have a great employer and they very understanding on what I am going through. However, I need to be home to take care of my wife and my 96 year old mother in law but I also need to get back to work. When I am home I work out of the house, but my job I need to be on the road. My wife understands this and wants me to get back to work, but she also wants me here to take her to her appointments and I need to be here to take my mother in law to her appointments as well, which she averages at least one a week. Like this week, she has an appointment today, two more tomorrow and one Thursday, my wife needs me to handle these for her which means I need to be home. We have four boys, all grown, one here in Phoenix, one in Burbank, and two in Seattle but they all have lives and families and do not have time to help me. I have reached out to many organizations to help drive her and or my mother in law to appointments but I need to call 72 hours in advance to reserve. Not as smooth as we were told this would be.

I hate to appear to be negative here, I do not want to, but many things run through my mind, and cancer runs in her family. Yes they died from this but they were in their 80's and 90's when they attracted cancer so most likely not a good comparison. I saw both of my parents and 4 aunts and uncles die from cancer as well as my old boss and 3 clients. Cancer does not leave a pretty vision in my mind. I guess what I am saying to me cancer has only meant death and it is hard for me to get this out of mind and it scares me every day that I can lose my wife who is so full of life and is my glue.

Again thank you for writing to me and I am most likely overly cautious or maybe downright ridiculous on how I feel but I do not know how to relax and say everything will be fine...

Ladylacy · May 2016

It is hard

First off I'm sorry to hear about your wife. My husband never questioned his doctor about anything. He believed in them and that was what was important to him. Needless to say I had my own opinions about some of his doctors. He fought the battle for 5 years and then lost it. After his first cancer was considered NED a second primary cancer occurred and spread to his right lung, he declined all further treatment. My husband's first cancer had not spread but he was still a Stage 3 due to the size of the tumor. It was a year after surgery that a second primary occurred and that is what couldn't be stopped. This was his choice and neither I nor our sons tried to talk him out of it, although we wanted to. In fact, his doctors didn't either. His specialist, who we both had great confidence it, I guess felt that there was nothing else they could do. Chemo was offered but we were told up front it would only prolong and could possibly hasten his time. He lived almost 2 years from the time he made his choice and only the last month was the hardest.

Being a caregiver is hard there is no doubt about that and one thing I learned was that the decisions are not ours to make or to try and talk our loved ones out of their decision. We were one month shy of our 53rd wedding anniversary when he passed so it has been hard but the one thing I can fall back on, is that he made his decision as to what was best for him. He went thru a lot 70 plus rounds of radiation, 10 rounds of chemo and surgery. I also had an aunt who had esophageal cancer and she fought it hard, but in the end due to spread and all that she was going thru, she said enough was enough and stopped all further treatment and passed.

We as caregivers think we know better, but in the end it is still the patient's decision and if your wife is satisfied with her doctors that is all that counts. Just remember to take care of yourself because you are important to. You will have feelings that are different than your wife's and others will tell you you should do this or that, but remember your wife's choice is her choice.

Wishing you peace and comfort

Trying to understand

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