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The struggle has been in vain- it’s spread- update on Bob
I haven’t posted anything in quite awhile (although I have been reading everyday). It seemed like every time I posted, something else happened. Well, even without posting it’s happened. When Bob was 1st diagnosed & it was decided that the bladder must come out, we were told that he would be cancer-free after surgery. They told us that if there was any possibility of cancer anywhere else, they would not do the neo-bladder. They supposedly checked him out thoroughly, he had bone scans, CT scans, X-rays etc & we were assured that the cancer was contained in the bladder, it was not in the muscle blah, blah, blah. So, he had surgery on Oct.2/07. I’m sure you all read our previous postings about infections & re-admissions & diapers ec. It’s been a nightmare & total mis-management. During 1 of his re-admissions they performed another CT scan & lo & behold, found a lung nodule. Someone took another look at the CT scan & found 3 lung nodules (the lack of communication has been another issue- why they would tell a drugged up patient & not the next of kin is beyond my conprehension, but that’s a whole other story). Anyhow, Bob has been home for quite awhile & doing quite well, gaining back some weight etc. When they let him out they said they would schedule another CT scan & let us know when. Just before Xmas the hospital called to say that he missed the appt. We had not been notified as agreed. Anyway, it was re-scheduled for last week & they called on Mon. to make an appt. to review it. As soon as I heard that they had called, I knew something bad was going to happen. There are 2 growths in 1 lung & 1 in the other so far. The Dr. we saw said that given his history, surgery would not be an option. He will refer us to an oncologist but………….. I am so angry!! They butchered my husband for nothing & I mean butchered!! He is still wearing diapers- they cut all the nerves- he has no sensation or urge to pee. He is(was) a very attractive man of only 61 wearing diapers & pads all the time. We were accepting of that when we thought he would survive. Now, we find out that he is going to die. This Dr. we saw the other day said it looks like these nodules have grown about 3mm in a couple of months. That’s it for now- I feel a little better for venting. Regards to you all- Lorrie
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26 Replies
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Hi Lorrie
I’ve been spending a lot of time in the cafe of late – reading many stories and relating to so much (my dad has BC) your story moved me and I had to reply and say I wish Bob yourself and the rest of your family well and you are in my prayers. I hope all that has been put into place goes well, best wishes and take care.
~hugs~
love is the life of the soul….
it is the harmony of the universe
Lorrie, I have been following your journey and it is good that Bob is now being looked after by a major cancer center. I can’t offer you any advice except to say, allow yourself and Bob to develop and establish a relationship with your new Oncologist. She has a good plan in place, and seems to truly be looking after Bob’s physical health, seeking an opinion from the appropriate surgeon and not rushing into anything.
I know it is frustrating having to wait, I had a similar scenario with pre chemo testing, which found a kidney problem which has since been dealt with. Thank goodness it was found before the chemo started.
I just wanted to wish both Bob and you the very best and hope you are able to spend some relaxing time together, its been hard going to date and you both deserve a break!take care
Maria xx
Lorrie, Seeing a thoracic surgeon seems like a positive step. I hope you can meet with one soon. Has anyone scheduled a lung function test? It is now 3 1/2 months since my husband had his lung surgery for the met that showed up in his lung. Prior to his surgery they had him have a lung function test I suppose to see how much he had now and if he was an appropriate candidate for surgery. My husband has COPD among other ailments. They are doing so much more these days with lung surgery because they can use the scope and do what his surgeon called minimally invasive surgery.
We met an 87 year old woman last week at the Cancer Center and she had a lobe removed 3 weeks prior and she looked very good.I don’t know the relative merits of chemo vs surgery but from what I read if you can get rid of the cancer by cutting it out it is better. Julie
Volunteer Coordinator
ABLSC
Lorrie,
With this disease anything that gives options has to be taken as a positive. Give yourselves a much deserved break. Enjoy the fact that this Dr. thinks it is treatable…Even a glimmer of Hope is still Hope!
.·:*¨¨*:·.Karen.·:*¨¨*:·.
Caregiver for my Wonderful Husband Angelo, who has Metastatic Bladder Cancer.Life isn’t about how to survive the storm, but how to dance in the rain.
Lorrie,
Sounds like a plan for Bob, whether or notit is good or bad is hard to determine. She says it is treatable, hang on to that, take care and we are thinking of you and yours, Ginger
We heard back from the Oncologist @ GRCC this afternoon. They did the re-testing & concluded that the cancer in the lung(s) is from the bladder- not a new one. She said “that’s a good thing”, but I’m not so sure. So, the plan is that she is going to refer us to a thorasic(?) surgeon. she will schedule another CT scan at the end of Mar. or early Apr. to compare to & to see if it pops up anywhere else. If there are no new sites (& depending on how fast it’s growing), she feels that surgery would be an option. She is holding off on Chemo for now- said waiting is OK. She doesn’t want to make him sicker if it’s going to be elsewhere. I would appreciate your thoughts. As usual I’m a wreck- Bob’s only reply was ‘good’. Well, back to shovelling out from this latest storm—Regards, Lorrie
Lorrie sad when you have to put on a sad voice to start getting things accomplished. I mean that Path Report are these Dr’s mentally challenge or what it is either negative or positive. What a bunch of whackos these Dr’s have turned out to be. If someone told me my Path Report was clean and it wasn’t cancer or not I wanna knock someones head off and I am usually an ez going guy. Wow to much to handle, Joe
Hi Lorrie
I am glad you and Bob have started to move forward it sounds as if you have been through a nightmare.I really hope the appointments bring some hope and at least a way forward.So sorry I havent responded before I just seem to get sort of slfish and wrapped up in me but I pray for everyone on this sight.
Lisa
My sediments exactly, Lorrie!
Debi
Hi Julieann- I’m sorry about your Mom- I’ve been reading your posts. I remember clearly at our meeting with the surgeon,I specifically asked him if Bob would be cancer-free after surgery & his reply was “I wouldn’t be doing it if I wasn’t sure. This is the ‘cadillac’ of surgeries you know” Well, B……T!! I would take great pleasure in choking him.
Unfortunately this is all starting to sound very familiar. My mom had RC in Aug. Before surgery, they din’t do hardly any tests (on the rest of her body), but we did not know any better. I mean it happened so fast. She was diagnosed the end of July and by Aug. 13th she was in surgery. After surgery, they said she was all clear. Nothing in nodes. October scans…nothing. January scans..3 lymph nodes and maybe more (PET scan Tuesday). I have wondered why you would suggest surgery without knowing if it was somewhere else. Also, after surgery the oncologist, called it “fairly aggressive”. I guess surgery was still our best option, but I just hate this.
Lorrie – We were so sorry to see this news, but very happy to see the update that you now have appts lined up next week. Hopefully you’ll be getting better information and answers. We will keep you, Bob and the the rest of your family in prayer and also pray for the wisdom of the doctor’s and for better communication. Please do keep us posted via the forum. Margot and Harry
Good job Lorrie, whatever it takes to get their attention. Isn’t it a shame it is that way. Good luck tomorrow on the tests.. maybe things will turn out to be not so bad, I am the eternal optomist…oh and from caregiver to caregiver, a glass of wine does wonders. Ginger
Lorrie,
Great! Go get them!!!Great Job!
Caregiver for my Wonderful Husband Angelo, who has Metastatic Bladder Cancer.Life isn’t about how to survive the storm, but how to dance in the rain.
Hello everyone- It’s really all starting to sink in now. I have been on the phone all day it seems getting different appointments set up. Last week when we received the devastating news about the lungs, they left us hanging with no direction. There have been so many Dr.’s involved in Bob’s case but I don’t think they talk to each other or read each others reports. Anyhow, when I got up this morning I decided to play my ‘helpless female’ card. I put on my softest, teariest voice & called the urologist’s office where this all started. Well it worked. before I knew it I was getting calls from practically every Dr. I’ve ever heard of. We now have an appt. for CT scans tomorrow A.M., full bone scan next Mon., an appt. with an oncologist at a Cancer Centre on Tues., & an appt. with the Urologist on Wed. Our kids are going to attend a couple of these appts. with us so maybe between us all we can retain/digest some of what we will be told. I’ll keep you all posted. Wish us luck- Best Regards, Lorrie
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