Another Cancer: I had a CT scan due to my CLL... - CLL Support

CLL Support

17,399 members28,392 posts

Another Cancer

MyCLLJourney profile image
MyCLLJourney

I had a CT scan due to my CLL. The doctor wanted to see whether my internals were impacted by my high WBC (123.5K). It showed I had a nodule on my bladder. The biopsy said I have sarcomatoid carcinoma of the urinary bladder. It's rare, aggressive, and has a poor prognosis. I'm waiting for the referral so they can start looking at staging and treatment. I have no symptoms, so I'm hoping they found this very early. I could use many prayers right now!

83 Replies

Praying it is internal and caught early. Often the more aggressive the better they response to treatment. Your CT for CLL has providential caught an unknown early, praying it dies and early death with the tuberculosis treatment or whatever is the latest means of attack.

Im praying for you....:)

Leahncam profile image
Leahncam in reply to Pacificview

God bless and provide complete healing in Jesus name

Wishing the best for you🙏

Prayers for a complete healing to our God Almighty in Jesus’s Name. Amen.Sandra🙏

Praying for you.

🙏🏾 Praying for a speedy recovery.

Sending best wishes for a positive outcome.

It certainly never stops, this miserable thing called cancer. I pray for you and your family and that your doctor is on top of this and gets it out. Jeff

I`m sorry you`ve been hit with this. The husband of a friend of mine was diagnosed with bladder cancer approx 12 years or so ago. He was caught in time, treated and still with us now.

You can beat this.....take care. Sending positive healing vibes your way.

I have CLL and have come down with kidney cancer as well. It is so hard to have yet one more thing to worry about. But confident your good doctors will stay on top of it and do what is necessary to rid you of it. God bless and make you whole.

MyCLLJourney profile image
MyCLLJourney in reply to MV29

I don't know where you are at with treatment for the kidney cancer, but I wish you the best outcome!

Cookie341 profile image
Cookie341 in reply to MV29

My Dad had kidney cancer 8 years ago and is well. Prayers and healing sent your way!

Jm954 profile image
Jm954Administrator

Sorry to hear this but what a fortunate find and hopefully caught soon enough for you to be cured.

Sending you best wishes.

Jackie

Praying for your healing.

Wishing you the best.

MyCLLJourney,

Often we get concerned about the number of CT scans needed to track internal nodes. Your case shows the advantage of having regular CT scans.

Praying this has been caught early and you can get it kicked out of your body quickly.

Praying for peace and calm as you wait for answers and for complete healing.

God Bless,

Hal

I know what you mean about CT scans. I was reluctant to have it done, but now I'm glad I did even though it's not something I wanted to hear.

Zia2 profile image
Zia2 in reply to MyCLLJourney

My doc still orders them annually. My latest showed a cyst on my right kidney that wasn’t there 9 months ago so they’ll watch it. I’m glad you had one done since docs found it and can treat it ! Saying a prayer for you 🙏. Hang in there.

🙏🙏🙏🙏🙏

Sending prayers to you! 🙏💕

Sending my prayers for you

Wishing you a quick and easy recovery from this new nightmare!!Know that so many of us care !

Be well!!

Our prayers are certainly with you. The unknown and waiting are so difficult. We have you covered with prayers.

Sorry you have this in your bladder, but glad that you KNOW you have it and can deal with it. Love and prayers Liz P

All the very best to you hope they can get you sorted quickly xx

I’m so sorry to o hear this... my husband has just been diagnosed with prostate cancer to go with his CLL... about to be treated for both in the next few months.I am certainly sending prayers for you.

Stay safe !

Fran 😉 🙏

MyCLLJourney profile image
MyCLLJourney in reply to Fran57

Praying and hoping all goes well for your husband too!

Sending positive thoughts. You can beat this!

Wishing you the best. and sending positive thoughts.jenny uk

Praying for you.

Praying for you, hon... for strength, courage, peace and total healing. 🙏

Sending you prayers, healing and positive thoughts. Shelley, UK

Soory to hear that .I had a BMB some days ago ,

I have CLL ( 32 months on Ibrutinib) doing very well.

Unfortunatly it seems i didn´t reach uMRD ( 0.01% ,that´s 10 cells every 10.000)

But in the last 6 months HTC, Hb and plateleles have raised ,althought the first two have dicreased to 48 /16.8 , but no my platelels ( 600K from 500 K in 2 months ) .

Negative for the two Jak3 mutation tests , low EPO but in normal limits.And waiting for CALR test result .

I am being too patiente ...till my busy Dr tells me what´s going on as she got all the results.

I only got the Flow Cytometry results but not the pathology of the BM ..

I suspect ET hope i am wrong

MyCLLJourney profile image
MyCLLJourney in reply to antonb

Praying you get good results. I have been fortunate with CLL. diagnosed in 2011, chemo in 2012. It started coming back in 2017. All good except IGG is slightly low and WBC is 132.5

antonb profile image
antonb in reply to antonb

I have been finally diagnosed PV ( Polycitemia Vera ) they will change to Acalabrutinib + aspirin . Anyone there with CLL & PV . Please contact me and share experience

I'm so sorry to read this. Stay strong, stay positive! I pray that all your prayers may be realised and more. Blessings to you and your loved ones. 💪💫🙏🏻

Thinking of you and praying for you . Up date as with any further news.

You’re in my prayers.

I’m so sorry - prayers coming your way! Xx

You have my prayers. Such a difficult time for you x x

I'm so sorry to hear that. I do hope that they have caught it early and can treat it successfully. Sending love and hugs. X

What a shock this must have been for you. Wishing you speedy treatment and a good outcome. With love and good wishesChrisx

Sending good luck vibes and 🙏🙏🙏 💕

Lifting you in prayer for healing.

Praying for successful treatment and complete healing🙏🏼

Skins are always so scary but please God this was found early. I pray for your strength and for God to work through your doctors for a complete recovery. X🙏

I am sure this was a shock! Knowing is better than not. You are a warrior and you are fighting this war with courage. Hang in and hang on, tie a knot in the rope when you want to let go and hang on a little longer!!! Prayer for you!

Hello MyCLLJourney

Prayers to you for good recovery and strength to endure your trials ahead. Blessings.

prayers!!!

Praying for you brother 🙏🏼

There's just so much coming at us these days! Isn't one cancer and a pandemic enough? Stay strong, keep pushing through these tough times. Wishing you the best. 🤞❤️🙏

Prayers and good thoughts being sent to you!

Praying for successful treatment and complete healing.

My prayers for your recovery are now sent for you. I'm sure this has you anxious; especially, because we always hear that CLL normally doesn't spread. I guess it is possible that this new cancer actually didnt come from the CLL cells; who knows.

Take it one day at a time. Its one of the ways I know to get through very traumatic situations. Don't let the new situation consume you, stay strong and believe that everything will work out well.

Carl

Sending prayers and peace your way...

Prayers coming your way.

So sorry that you have to deal with this added stress. You will be in my thoughts and prayers.

Sending prayers that they caught it early enough! 🙏

sending you positive energy- healing vibes and strength for your body and spirit!

Prayers for a good outcome. I have spent the last three months with reoccurring skin cancer that has been very painful. Thankfully I am responding well to O and V so far after a rocky start. Best of luck and strength to fight this challenge of CLL and what comes with it.

Thank you! Good luck to you and prayers you can beat this.

Thoughts and prayers are with you 🙏.

Lots of prayers are coming to you....this community is behind you big time!!! Thank goodness for that CT scan!

Hang in there!!!

Panz 🙂💕🙏☘️

So very sorry to hear this - sending hugs and prayers your way ♥️🙏♥️🙏My husband has been battling CLL since 2009 currently on Zanuibruitnib and now has been diagnosed with stomach cancer it was found while doing a scope for his Crohn's disease he begins chemo this week for the gastric cancer than will have surgery than more chemo all while trying to continue to treat his CLL

It just sucks to have to deal with 2 cancers, Crohn's, kidney disease....the list goes on...

My heart breaks for him and all those fighting cancer and all diseases 😢😢

I'm so sorry to hear and I'm sending prayers.. I hope he has success in managing both cancers. I hope he stays positive and does everything he can to fight it.

Praying for the best for you. The CLL scans may seem too much but are so good when they find something that we can address early. Steady the helm, and stay the treatment course.

I will add my prayers to the others. God knows your name and hears you.

Sending positive healing thoughts for a full and speedy recovery. 🙏 🙏🙏

Praying for you 🙏

My husband was also diagnosed with aggressive bladder cancer after a scan for his CLL in July. He had one cycle of BCG treatments and has now started venetoclax and obinutuzumab for his CLL. He has been told he will have to have regular bladder checks from now on. I hope things work OK for you both!! It all seems so unfair somehow.

MyCLLJourney profile image
MyCLLJourney in reply to Jyw2

Curious what type of bladder cancer he had. Mine is extremely rare and there is no specific treatment plan for it. It is called sarcomatoid carcinoma of the bladder. Only something like 274 cases between 1974 and 2004.

Jyw2 profile image
Jyw2 in reply to MyCLLJourney

I am not aware that we were told a type as such, just that it was a high grade/ aggressive type of cancer with a high risk of return, but that it hadn’t spread beyond the lining. We had a dreadful Consultant who delivered the news in an unsympathetic way over the phone (due to COVID) and he just bizarrely said that my husband could not have his bladder removed because of my husband’s CLL, as if we had asked if this was possible. My husband has had very good care for his CLL but less so for the bladder issues. There has been little opportunity because of COVID to discuss the situation with a specialist, I have so many questions! Things are hopefully better for you in the US?

MyCLLJourney profile image
MyCLLJourney in reply to Jyw2

Your husband's cancer sounds like the same as mine. Mine was only 1 cm and only in the lining. What treatments did your husband get for the cancer in the bladder? Good to know bladder shouldn't be removed when you have CLL. I have not heard that before. But then being so rare, it's hard to find anything. What are your husbands cll indicators? I'm 13q mutated. Did your husband's ever have FCR or CVP?

MyCLLJourney profile image
MyCLLJourney in reply to Jyw2

One more thing ..... I hope and pray for success for your husband's health!

Jyw2 profile image
Jyw2 in reply to MyCLLJourney

My husband had a course of BCG treatment, I had understood that this would be repeated, however, they just gave him the one, which doesn’t quite agree with the suggested treatment reflected on most things I have read on the internet. They have said he will have regular Cystoscopy checks. He has just started treatment for his CLL with venetoclax and obinutuzumab, which has just been approved as treatment in the Uk. My husband doesn’t have any mutations, but if I understand things correctly is suitable for people with the mutation. I was concerned if his bladder issues would be an added risk for Tumour Lysis Syndrome, which is a risk with V & O, but he’s ok, and they said it wasn’t an added issue. He has another Cystoscopy on 11 May, so we’ll see how that goes! I wouldn’t necessarily trust what the Specialist said with regard to not removing the bladder, as I didn’t trust him. If I get the opportunity to go with my husband I am going to ask lots of questions, but whenever he goes on his own he doesn’t ask the questions I would (think he would rather not know). Thank you for your good wishes, it goes without saying that I wish the same for you!

Prayers sent your way.

Sending prayers for healing and peace..

so sorry to hear this news from you. With God's guidance, i hope your experienced doctors will be on top of your treatment. i wish you all the best and speedy recovery and complete healing from both CLL and the newly diagnosed bladder cancer. Fortunately, you are in safe hands in EUROPE, AMERICA, AND AUSTRALIA but here in Ethiopia because of bad governance, greedy and incompetent politicians and negligent health professionals, time is not on our side but we will not give in to hardships in our fight against CLL and other emerging caners. my prayers and hugs to you MyCLLJourney.

My thoughts and prayers are with you.

🙏 I hope all turns out that it’s at a very early stage and you’ll be just fine . you’ve got a big support group here to walk this path with you.

Best wishes

John

Thinking of you. Best wishes.

Soon I will climb a very high Colorado mountain, to be closer to the almighty, and 🙏 for good things for you.

You may also like...