Worried Again

[Marymac4441]

Hi Everyone

My 4 stage non small lung cancer is progressing. I go to my oncologist this Friday to find out if Keytruda will buy me some time. I'm having more trouble breathing due to past radiation treatment having caused thickness with scar tissue in lung and I cough so much. I can't taste anything but sweet food but I still make myself eat. The cancer went to brain with two tumors...one shrunk, the first one..we don't know if it is scar tissue or if tumor is growing..have another MRI end of December to see about it. Now found out my oncologist is retiring end of December. I'm not asking for pity. I'm just stating facts. I am just wondering what to do. I keep asking GOD for a sign. I have been told without treatment, I have maybe a year left...maybe less if I get pneumonia or an infection. My husband won't talk about it. He just wants me to keep fighting. Anyone got any suggestions? I keep praying. Have no one to talk to who understands. Thanks.

[PegD]

Hi Marymac,

Do you have Palliative Care available at the hospital or cancer care center you are being treated at? They have amazing people you can talk to who can help with the feelings and questions you are dealing with. I have taken advantage of them a couple of times. I have also found a lung cancer support group co-led by a Palliative Care therapist and pulmonary care coordinator. We have a large group of survivors that have become very close. It can be difficult for families to be there for us in the way we need them to be and reaching out as you are doing is a very good thing. FreetoBreathe.org has good resources and might be able to point you in the right direction. Lungevity and Bonnie J Adarrio Foundation are good resources as well. You are not alone.

[Lisamk55]

Hi Marymac,

I know this is a very stressful time for you and your family. One thing I have learned is that doctors do not play God. While a prognosis is something they tell you, ultimately God makes these decisions. Keep fighting and praying. Chemo affects your taste buds, so I am sure things are not tasting as good as they normally do. Keep eating.. that is so important. You need the nutrients. All of this wondering and worrying surely gets in your head, but keep asking your doctor for options or trials and never EVER give up. You can do this. Praying for you.

Lisa

[FtB_Peggy]

Mary,

Thank you for sharing with us. As you can see, this community understands. Please get support as Peg suggested, you do not need to do this alone and you do need to process it and talk about it all. You deserve the support and Palliative Care is a great place to start. If you want to email me at [e-mail] I will be happy to send you some resources too. Please keep talking to us, and be gentle with yourself. Hugs.

[JeanE41]

You have certainly been through the mill with this nasty disease we all share. That is the secret to this community, someone here has been through the same or a similar experience and understands. There's a lot of love, understanding and wisdom here. No one who has not heard those horrible words "you have cancer" can truly understand.

My little bit of advice is this, find out from your retiring oncologist who he recommends that you see for continued care. Then look at it as an opportunity for a fresh look at your situation by someone who may have something new to offer. As the others here have suggested, do seek support.

Please update us on what is happening and how you are doing. We're here for you.

Jean

[FtB_Peggy in reply to JeanE41]

Jean - exactly!!!

[Marymac4441 in reply to JeanE41]

Thanks Jean. They left it up to me to get doctor. I selected one in same office but who I had gone to years ago. My doctor was going to suggest a different partner who I saw when my own doctor had to go on three months sabbatical. That doctor had basically told me if my cancer came back, he had no options left for me. Thus I picked a different doctor who hopefully is a more forward thinking one. Thanks for your words of wisdom.

Mary

[anrean in reply to Marymac4441]

Marymac, don't ever be afraid to get a 2nd or even 3rd opinion. I went for a 2nd opinion and everything changed because the new doctor knew a lot more. Search for one who is an oncologist - I keep hearing that hematology oncologists are pretty good at helping. Fortunately for me I live very close to Roswell Park Cancer Institute, so a specialist is right there. You are not obligated to any doctor or practice, you are obligated to get the best treatment you can find for you.

[Marymac4441 in reply to anrean]

Thanks.

[woonsin in reply to anrean]

2nd or even 3 rd opinions are needed for critical decisions.

[Pandora8205]

Mary ,

I have 4 stage nscl spread to bones and brain very traumatic some in liver and adrenal. That was 2 years ago. Needed brain surgery that was successful. 2nd scan showed. Good 3rd scan 16 new babies whole head radiation 4th scan showed no tumors tried carboplatin and alimta worked for a while shrunk cleared liver and adrenal. Tried optivo. Didnt work for me. On taxtere and ram something else.shrunk. tumor first round. 2nd round all stable. Each person is different you need genetic biopsy i have 11 mutations 9. They have not seen. Doctor very pleased its still working. Stay positive ask lots of questions i always ask to see scans tell them show me and explain. Sorry so long but so much more to talk about. Please let me know if you have questions. Stay positve. I am in north carolina.

[Marymac4441]

Thanks Pandora. I appreciate your comments very much. Keep fighting too.