bone lesion treatment plan distress

Hi Holly
Can't offer you any explanations on how your doc is responding to you. Just wanted to let you know I am thinking of you during these challenging times. I hope you can find some positive answers soon.

Maria xx

Holly -- I, too, have had supposed (or presumed) "mets" seen with scans, but I, too, have found no rush to follow up, even with a biopsy. The plan for me seems to be to let a "met" "act up" before treating it. I am working up steam to push for
tests confirming these are actually malignant and metastatic. I can see myself getting a new team, too, to treat as best we can whatever I actually have. My bladder cancer is TCC with sarcomatoid features. They call it stage 4, but I have no patholgical confirmation of any presumed "met" only statements such as "consistent with metastasis" on my mri report.

In solidarity and in a sisterhood of hope -- Susan (mssmr)

Hi Karen,

The other cancer found in RC pathology was urachal...it is rare, chemo resistant and has poorer prognosis than TCC.
I have never been happy with the waiting involved when it comes to patholy or test results, but I have not before heard "to wait to treat cancer until it hurts" . After my oncologist explained this to me, I was stunned. Even several hours now I think what he used alot of words to say is, "palliative care". My hubby who heard the entire conversation took it that way too. Needless to say, I am researching not only further treatments, but even a new team if need be. This chick is not done yet.
Thank you for the update on the trial. I hope it works You are in my prayers.
I did get on the mailing list!!!! It can be done lol
God Bless, Holly

Holly,

I am sorry that you are feeling, and experiencing all of the emotions that come with this disease...mainly frustration at the waiting time that is expected.

If I remember correctly, don't you have 2 different types of Cancer? If that is in fact the case, please remember that other metastatic cancers can be put into remission easier than bladder cancer ( and it is possible to get a remission with bladder cancer too). Maybe the leison they found could possibly have spread from the other site?

I just posted about a Clinical Trial we just had an appointment about.

You are in my Thoughts,
Karen

Hi mighty warrior woman...Athenia....it was Athenia, right? See, I'm having to check my ole brain cells again. I'm hoping it is a B-12 shortage that I have.
Anyway, dear Holly, am keeping you in my thoughts and prayers and have friends praying for you as well, that this latest challenge will soon be under control It
sounds like you are doing all that is possible to take control of the situation and as always, I applaud you for your strength and valor. I know any of us in your situation would be anxious and fearful...I pray that God surrounds you with all the love, support, comfort, kindness, medical expertise, that you need and most especially peace of mind. Take care, dear friend. Melodie

Dear Holly,

Firstly I just want to say that I am thinking of you during this time.

I wish I could give you some answers to your questions unfortunately I am unable to do so. I am sure however that help is on the way from our Forum friends whom have experience in this area.

Decisions made by oncology professionals puzzle and frustrate me sometimes. It is as though they are forced to follow protocol on standard treatments.

It would make sense to me to start a treatment now to blast that lesion in your hip to smithereens and banish it forever. Waiting for the lesion to be symptomatic sounds like madness to me although I am no doctor.

The fear and frustration you are feeling right now I cannot take away, but I am certain from your previous posts and advise for others, you have the strength and courage to find the answers and treatment you deserve.

Take care Holly.

Leigh