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A community of cancer survivors supporting each other.

I love my family

I love my family and I am so grateful for their love and support.  One issue has come up which Is causing me additional stress.  I have made the decision to move from Watchful Waiting to Retuxin and Bendamustine on the advice of the Oncologist who gave me my second opinion.  This decision was made because  I have Follicular Lymphoma but I also have a  contradiction because twhile the molecular structure is typical of Follicular, there are other cells which are not typical. I don't claim to understand it, but did anyone here have the CD 5?  This seems to be the reason the doctor feels it could be more prone to returning and that I should treat it now.

 The issue with my family is that they are questioning why I would take this advice over the first doctor who also recommended Retuxin only treatment.  How do I know this doctor "knows what he is talking about"? I am scheduled to have a port placed this Friday and to start treatment next week.  .  Now I am upset by this reaction of my family and this has made me start to doubt the decision I have made.  I feel good about this doctor, I put my trust in God that this is the right thing. I wish people understood that right now decision making about anything is excruciating.  It is not helpful to cause such turmoil when I am so vulnerable.

April threw a punch at your cancer.
Stefanie, Neal sent you a prayer.
4 people sent you a hug.
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Yes, this is where it gets difficult... Are you going to be treated at a major cancer center that specializes in Follicular Lymphoma? I found that my local hematologist oncologist disagreed and questioned what my team of doctors at IU Health were doing with my care. He thought that they were treating it too aggressively. I trust my IU Health doctors because this is their specialty. There is a team of doctors that works together to treat blood cancers. They meet on regular basis to discuss cases and propose the best possible treatment for each case. Even though I like my local oncologist as a person, I trust the team of doctors with more experience.

It's a hard decision for you to make which doctor to go with. You can ask each doctor how many people with your particular lymphoma they have treated and what worked best.

Your family is probably struggling with the diagnosis and they want you to get well. That being said, it is your decision which treatment and doctor you are going to choose. I have a sister who doesn't believe in conventional medicine, and it upset her to see me go through chemo and then stem cell transplant. She prefers using diet and exercise to treat ailments. She was trying to suggest all kinds of natural remedies to treat my leukemia. I had to tell her that I trusted my doctors and would only follow their recommendations. It was hard. She was hurt. In the end, I am still alive and in remission 14 months post transplant.
Cleo likes this comment
It is a tough call for you to make and as loving as your family is, they don't want to see you go through a lot of discomfort. We were in a similar spot, we were being treated by a local oncologist who suggested things but let us choose. We chose based upon what she said was the strongest chemo available to treat my husband's pancreatic cancer. We live in Maine and decided on a second opinion from Dana Farber Cancer Center in Boston. They have a whole department dedicated to treatment and research of pc. Their opinion was different, they convinced us that the strongest chemo should be reserved, and used only if there was a re-occurance. We chose to follow the advice of the Boston doctor because they were specialists in this form of cancer. Your situation is different. The experts recommend more aggressive treatment. We decided to error on the side of the experts. Interestingly, our local oncologist recommended radiation after chemo but in Boston they said in our situation, radiation has shown not to be of benefit. Additionally, some with radiation don't do as well. Again, we are going with the experts and will bypass the radiation. He can have it at a later date if necessary.

These decisions are yours and I hope your family comes around. In the end, if there is an end, you need to feel you have done everything you can to make your treatment successful. I am sending prayers your way.
Cleo likes this comment
Follicular lymphoma is a tricky beast and it sounds like you have a little something extra to make it more complicated. If you have done your research about the doctors and feel comfortable, do what you think is right. My mother in law has breast cancer for the second time, and when it came time to make a decision about treatment, I asked her to get a second opinion with an oncologist that specializes in breast cancer, and not just a general oncologist like the first one she saw. However, she chose not to do that, she felt comfortable with the first doctor, and I have to respect her decision.

I can certainly understand the struggle when dealing with your family. They may need a gentle reminder that this is your journey and while you appreciate their advice and support, they need to respect your decisions. Good luck to you. I did B-R for six months in 2015, it is certainly one of the easier treatments from what I've heard. You've got this!
Thank you for the encouragement Stefanie. I get so overwhelmed by all of the decisions I need to make. Tomorrow I have a port placement and just reading about it makes me cringe, but I do believe my veins will be better for it. I am hoping to only need one round of six months but my doctor says that the type of cancer I have, tends to return. Did you have a port?
I do not have a port, but I wish I had gotten one because the veins in both arms are trashed now from the bendamustine. After my first B-R treatment I even got thrombophlebitis because I didn’t have a port. Hopefully your port placement goes well and you start rocking and rolling through this treatment!
If you have trust in your doctor follow your instincts and go with them. I am sure that your family is thinking about what is best for you although others do not know how you feel and must let you go with your own decisions as painful as they can be to make.
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Vital Info

Posts

October 8, 2017

Portland, Oregon 97206

Cancer Fighter

Cancer Info

Non-Hodgkin Lymphoma

Follicular

September 11

Stage 2

Grade 1

Yes

Uncertainty

Anticipation is the hardest

Support me with prayer, positivity when mine is sometimes non-existent, and FaceTime visits when I feel up to it.

Support me, but let me have fun times with you without a barrage of cancer and treatment questions. You are my light in this dark place.

Providence Cancer Center Portland, OR

Enlarged lymph nodes in my neck and weight loss.

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