Selasa, 12 Jun 2012

trusting God instead of Chemo

trusting God instead of Chemo..

Hi All, My name is Lynn & I am a 51 yr. old lady from central FL. ( I think I may have entered an intro a while back..but boy, have things changed..

I have had bladder cancer since December 2003 and was actually in remission the last four years and if at my December 2010 cystoscopy had been all clear, I would have moved to annual cystos instead of ones every 6 months. But, instead, my urologist spotted a small tumor. He then scheduled my TURB to remove it AND an IVP at the same time as I hadn't had one in a few years.
The IVP showed a blockage in my left ureter at the distal end and my left kidney was enlarged and didn't look right. The only sign that I had something else was going on, was a mostly subtle aching in my left side pretty much between my hip bone and my tummy. Sometimes in the night-time, it would get more than subtle & as I am on pain medicine for reflex sympathetic dystrophy ( that's a whole other health problem) ..I was a bit concerned it could be a back up in my low bowel...and was hoping it would go away..
The pain was actually being caused by the tumor in my ureter that was big enough it was almost completely closing off the flow of urine on the left side and causing hydronephrosis in my left kidney. ( I didn't need this as I already have stage 3 kidney disease/59% kidney function.) ugh!

You could see it in my urologist's eyes when he came in that morning to do my TURB. He had us bring the disk that had the IVP results and films on it. And I had asked him a few minutes before, if he had looked at the IVP films yet. I mentioned that it looked like something might be up. Then he came back with 'that look'.. of 'ohhh noo!".. he said he would take a good look after he did the TURB. He saw the tumor up in the ureter, found it too big to try to remove, and then looked further up in the ureter and saw some other tiny spots up ahead. He then quite looking and came out to tell my husband that the cancer was now in the ureter and I would need to have my kidney and ureter removed, and depending on the grade of the tumors, possibly my bladder, also.
The tumors were low grade at this point and I didn't want my bladder removed if I didn't have to. ( concerns w/ the sluggish bowel & having the bowel cut to use some for the ileus/m?/) and he said he wouldn't mind at all for us to get a 2nd opinion. He also only did the big incision surgery.

We went to a cancer center near us for the 2nd opinion & at first, the dr. thought he could laser the tumors and he wanted to get a look at the right ureter also & be sure what we had going on. Along with checking there was no muscle invasion in the bladder..

After all of that, the tumor was too big and looked like a tumor into the left kidney pelvis he knew I would have to have the kidney & ureter removed. 2 of the 3 bladder biopsies came back with CIS superficial..( not where u could see them w/ scope).. and although the right ureter looked good, the washing came back 'some atypical cells'. He felt we could still keep the bladder, do BCG/Interfuron treatmt's again which worked for 4 yrs the time before, after I recouped from surgery & after the 6 treatmt's he would recheck the right ureter again...hoping if something did show up, it would be early enough to try getting it with BCG/Interfuron treatments also w/ stent.

He did remove the left kidney, ureter, lymph nodes, and my left ovary. The bigger tumor in the ureter had grown through the wall into the fatty layer, and was TCC of the kidney pelvis/ureter .. T3. There was also a small tumor in the kidney pelvis, non invasive. Thank the Lord, the lymph nodes were clean and all the margins were clean.

The cancer center wanted me to have 4 cycles of aggressive chemo, but I have 3 other health problems and am not very strong physically . The odds at best with the chemo added were about 50/50 & that is w/ no mets that we know of now. I have a very strong faith in God & feel that I would rather just leave this in His hands than weaken myself with the chemo..and am fighting this with diet and vitamins, etc.. at least trying to get my body stronger and healthier to fight. I'm not saying chemo is wrong, just feel like for me in this situation, its not the best thing and I know I'm in God's hands.

I have had great support in the bladder cancer support group and have many friends there, and look forward to supporting as well as being supported here, too.
In the fight, Lynn W.

Lynn, None of know when we begin this cancer battle, the path it will take us. We all must make our own decisions as to treatment. And, we learn as we go. We become our own advocates as we weigh the pros and cons. Each of us has our own set of physical circumstances that must be taken into account as we determine our treatment options.

We will continue to support you, as we do for all who choose to forego some recommended treatments. It is your life.

Our experiences do serve to teach one another and we gain much from that. This school is ever evolving in the information we can share.

Finding an experienced doctor to walk with you and help you make these decisions is paramount now. There are others here who are having to make their own decisions too. If we've learned anything about this cancer, it is that there is no set path or treatment from day one.

Stay connected with us, if only to let us provide encouragement and support.
Hope is always present, even when we aren't sure of our path.
Hello Lynn and I saddened by all the trials and tribulations you have been through yet also inspired by your strength and faith. My husband has had colon cancer (8 years ago) and now BC (1.5 years out) and the daily struggles of living a "normal" life with this disease can be very trying and hard. I for one am a very strong advocate of whatever the patience's decision is, so be it BUT only after much research, deligence, and every avenue of exploration have been applied. I'm not a fan of chemo either but I know my husband took the additional chances it provided as even though the numbers may be small, in the cancer world those small percentages are huge. If you have not already done so, may I suggest that you discuss your current circumstances and condition openly with all of your treating physicians and make a list of all the pros and cons. At the end of the day, any decision should be yours but at least you would have all possible reasons as to why you make your decision, whatever it would be, in hand. I also believe that much of it is in God's hands but He has given us the greatest gift we could have and that is the right to choose.

Many people have other health issues when cancer comes along; some go with chemo some not. Again, it's an individual choice. Ask your doctor how much time before he feels chemo should be started. Perhaps it can be extended a litle allowing your body to recover a bit before starting. I honestly don't think that chemo would be a recommendation if the Cancer Center felt your body couldn't handle it. Again, as mentioned above, check with your other doctors for their input and how chemo would affect your other conditions. You may ultimately even want a third opinion, not at all uncommon. Finally, when all is said and done, it is your choice and yours alone whatever your feel comfortable with and feel is right, go with it.

Best of luck and keep on keeping on.
Thank you so much for your caring response. Yes, it was one of those decisions that you really don't ever want to have to make, one way or the other. The interesting thing in this case is that both my urological cancer doctor/surgeon, plus the oncologist both said that if I didn't want to do the chemo, they would understand, and would honor my wishes and continue my care. The surgeon said that he felt like I had a good idea of what was right for me and if I decided not to do chemo and just wanted to go with the treatments for the bladder, that he would back me up on that and do the treatments and continue my care. The oncologist said that if I chose not to do chemo, she would still care for me, see me every 3 months, do blood work and recheck me and do a watchful waiting type protocol with me.

I think the thing that really got to me is that they said even IF I did the treatments, there was still the 50/ 50 chance that the cancer would come back anyway and it wouldn't work in my particular case. THAT got me BIG time! If I am going to risk my one kidney and my heart and overall health in general, I at least want better chances than that! I don't want to look back and think, why did I live those 4 months miserable on Chemo when I could have lived them at least in this much normalcy?

I am not saying that I don't think anyone should do chemo, its just for ME feels wrong from every point of view that I look at it from.
I have enough faith in God to trust that if that's not the way He plans to take me Home one day, then cancer is not going to take me. And if it is.. I can do all the chemo in the world and every other thing to help, but He will still take me Home. The best thing is that my family and closest friends all feel right about this with me.

They also said if it should come back, because this is generally a very slow growing cancer. It would probably be 6 months to 5 years before it happened.
There is also a medical doctor, general practitioner , locally that has had great success with helping people with cancer and heart problems regain their health and 3 of them are people that i know personally and they are 6 years out and doing great...these are people that were told they didn't have even a year to live specially without chemo or radiation. So I am definitely going to look into that option. The really strange thing is that my daughter in law and her family go to this doctor just as a family physician! Definitely think that is something I should do!

Thank you again! and I AM planning on being followed by the cancer doctor also..

AND I will continue to pray about this and read and listen to make sure I am following the RIGHT thing to do for me.
I sure hope that your husband keeps doing well.
Karego, Thank you so much for this sweet post of encouragement and support. I am grateful for that. I would love to be able to use this still for support.. PLUS I am planning on doing the BCG/Interfuron to fight the superficial cancer still in the bladder.
Much hope for success for you and looking forward to being in this group together with you.
Lynn, you need to go with what's right for you and what feels right for you and never look back :o) I think it's wonderful that you have such a supporting and caring system in place and that they all stand behind what your choices are. At the end of the day, it's all about that wonderful gift of choice and how we use it. Come to this board as often as you can for additional support and strength that you may need and God be with you and I'm sure he already is. Hugs.
Every day is filled with choices that change the next and you have some big decisions you are making here. It sounds like you trust your doctors and have a faith in God that will be your strength.
Supporting you in your decision is important and therefore I will pray that your diet and other plans will work for you.
Just remember that you always have a choice and will always have people here for you.

Keep the faith,

May your treatments that you are going to have and your faith in God keep you focused and moving forward. I know these decisions were not easy, but they are your decisions to make and you have to make the decisions that are right for you.

We are here for you, so please accept all the hugs, prayers and love that the Angels on this site are sending your way. This is really a very special place, with a lot of very caring and special people.

May God be with you,

Sending positive thoughts and prayers your way....may your BCG treatments be uneventful and may God give you the wisdom to make the right choices for you....

This is an individual journey, each of us sharing the same diagnosis but traveling different paths and avenues...There is always Hope.

God bless,


Thanks for sharing with all of us. Personally, I do believe in supernatural healing by GOD which doesn't mean I don't think all natural or human remedies can and should be considered as well as GOD also works through human means. It is certainly your choice but in my opinion why not explore other alternative remedies in combination with still staying in touch and checked by your current set of doctors. There is a score of info on the internet which I know we all need to be careful as to how reliable and trustworthy it is but many of them have documented examples where alternative methods and/or supernatural healing brought forth healing when the medical community had pronounced as terminal. Some people don't believe in chemo or radiation but regardless it is your life and body so you are more than entitled to choose your own path. He is the Great Physician and I for one employ prayer, faith, & healing practices all the time which I believe only enhance my chances for recovery. Keep a positive attitude and faith as you sort through all the many options you are considering. As all the others have said, we are here to support you no matter what and will be praying for your complete recovery no matter what path you choose. GOD Bless & keep you & watch over your healing!

Lynn ~

This is indeed a difficult journey, difficult battle.
I have dealt with it a little bit longer than you.
Down by 1 kidney and 1 bladder with this disease.

Thank you for sharing your thoughts.
For some it is difficult to say . . .
"I have decided not to have this treatment.
I have decided that treatment is not for me."
Afraid that you might be put in a position to defend
your decision.
People with well intentioned thoughts just not yours.

They will not understand, they too are afraid in a different way.
Loved ones and friends tend to think that making that
decision is a decision that you are giving up.

I have seen friends here fight the battle, give it their all
and die. I made the decision after Taurus1461 (Diana)
an awesome friend went through the radiation, chemo,
A woman in her 40's, she died way too soon.

Taking the treatments can alter how you feel from day to day.
I too want to be me . . . not be in a facitlity
going through a process that may or may not work.
A process surrounded by strangers.
A process that can rob me of special minutes.

I too believe that if God wants me to stay here, I will.
He may have other plans but until then, easy does it.

I will keep you in my prayers.
I thank you for sharing your thoughts.
Each person in this journey has the right to decide what
it best for them, for their situation.
It is difficult for those loved ones around us to understand
but Lynn, I do. God Bless.

always, B J
Matt went through 3 different chemos over the last year and a half, and his BC went to the bones. He will have another CT in May. The chemos did not touch the mets. If the Ct shows, what we expect that the cancer is growing they want to do the last chemo they can do, which sounds horrible. He had a rough time with all the chemo regimans. He is feeling pretty good, still working and not wanting any more chemo. I will respect his decision, and hopefully his faith will have here for many years to come. This is just for sharing and you have received some valuable support and info from others and we support you as well, Take care and good thoughts, Teri@Matt

HI Lynn, I understand your dilemma and your approach. I think it is positive that the diseased kidney is removed. and the bladder was not muscle invasive. It is logical to me given your concern about kidney function and concern about chemo dragging you down. It is logical and understandable, and I think you will do well. Best wishes to you.
Vgau-thank you so much for your encouraging reply. It's so nice to feel supported. I have already been blessed by some great people supporting my decision and just being there for me.. Looks like the Lord has led me to a whole new group of 'friends' and supporters/encouragers! thanks again
Easy_aka Ken..Your note was a blessing to me! THANK YOU!!! Looking forward to getting to know everyone here even better..and supporting YA'LL as well! Thanks again!

katmac/ Kathy.. THANK YOU! All the prayers are needed and appreciated and most of all..WORKING!

KennyH - Wow..what a great reply you've sent me. And yes, I actually AM looking into some alternative treatments/food plans. etc..interestingly daughter-in-love's family doctor has treated people w/ a special diet and some vitamin shots, etc..( all natural stuff) that has helped some that were told they didn't have long & it has now been 6 yrs with some of them! These are also people that I KNOW! So I really feel like that is something to check does my hubby! I am very blessed in that my family, closest friends and church family are all supporting me. Most of all, God is helping me! I couldn't do anything w/o Him..if some would think I am using my Christianity as a crutch.. well, I know I need the Lord for any strength I find and He says in our weakness, He will give strength.. He sure is leading in many ways and i am so thankful to Him for caring about lil ol me! Thank you for your prayers! I will add ya'll to MINE!

BJ!!!!! THank you for writing from your heart to me! I could just feel it! Sounds like we are in this same fight together! Are there any special things you are doing besides trusting God?which is the biggest thing of all..but I certainly have felt Him moving me as far as changing my diet radically etc..I just wish I had changed it years a go instead of waiting til i was in crisis..but at least I'm doing it now! Looks like He may even be leading me to a doctor that has been right at my back door the whole time! I have several other pretty bad physical problems and am praying and hoping that God will help me in that area as well.

Teri and Matt..thank you for writing me. I will be praying for you both. Isn't it so good to have God there? Looking forward to getting to know you better..
nursenancy.. your support means a lot to me. Thanks so much.
John 10-10.. :) what an encouragement! Thank you very much! It truly helps!


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