Newly Diagnosed with MIBC

[Stod]

Hello All,

I am a 35yo male. Healthy, very active, no family history, non-smoker (although high occupational exposure to smoke and carcinogens), with three young children 6 and under. To say the least, this news has shocked our family.

After blood in the urine was detected in May 2023, scans, cystoscopy, etc. a TURBT was performed in September 2023 to remove a 1.5×1.5cm tumour. This surgery was performed successfully and recovery went well.

However, Pathology results have come back indicating that the tumour is a High grade Urothelial carcinoma in situ, MIBC, and states that Lympovascular Invasion is present.

Having not met with my newly referred doctor for further direction, I am curious to know if anyone has had Lymphovascular Invasion? What does this mean?

I now start a journey that many of you have gone through and appreciate the information shared in this forum. As I digest this news, reading and preparing my mind and body for things to come helps.

Kind Regards,

Sheldon

 

 

[Joe]

Lymph vascular invasion means that the pathologist saw cancer cell(s) in  lymphatic vessel.  It is known 80-90% of metastasis of bladder cancer happen via lymphatic vessel and the rest is via blood vessel.  There are many blood vessels and lymphatic vessels in muscle tissue of bladder.  This is the reason why muscle invasive bladder cancer requires systemic treatment such as neoadjuvant chemotherapy even bladder is removed to kill off cancer cells which are possibly floating in blood or lymphatic system or implanted on other organs.   The identification of lymph vascular invasion increases a possibility of cancer cells having escaped into lymphatic vessels.

[marysue]

Hi Sheldon:

Welcome to Bladder Cancer Canada but sorry that you have need of us.  I concur with what Joe has posted.  From what you have said, it sounds like the tumour has gone into the muscle wall of the bladder and potentially involving the lymph nodes.  When you do see your doctor I suggest asking the following:

1) What is the stage and grade of the bladder cancer?  This will helps you understand where you stand on the scale of range of bladder cancer diagnosis.

2) What does lymphatic invasion mean and how will this affect my survival chances and treatment plan? Based on what I read in your post, there could be potential for some metastisis (spreading outside the bladder)

2) What is my prognosis? (Survival chances)  This is the news many of us don’t want to hear and is very difficult to hear but we have to be realistic about our future chances and how to plan going forward.

3) What will my treatment protocol involve?  The gold standard for the majority of patients with muscle invasive bladder cancer is a regime of chemotherapy followed by radical cystectomy surgery (bladder removal).  So most likely since your diagnosis is muscle invasive this is probably the course of action your doctor will discuss with you.

4) What are the risks and benefits of having the chemotherapy treatments? (If this is what your doctor is recommending)

5) What are the risks if I choose not to have chemotherapy?

7) Are there alternatives to chemotherapy?

8) What type of chemo drug(s) will I be given?  There are many options and what is recommended depends on your situation i.e. cancer diagnosis and prognosis, other medical conditions.

9) Will I also be under the care of an oncologist?

10) Will you be recommending that my bladder be removed?  If so, what other parts will be removed? i.e prostate, lymph nodes etc.  What diversion options will I have? (meaning alternatives for outside pouch or internal reservoir called a neobladder)  Some patients can be given a choice, some not.  Again it depends on a patients situation.

Getting a cancer diagnosis of any type is very frightening and all the unanswered unknowns at the beginning of the journey often send us into a mental tailspin.  When I first got my diagnosis I felt like my mind was a hamster on a wheel.  I just couldn’t stop the spinning.  You have a big journey ahead of you and as you have already figured out it will involve a pretty steep learning curve.

I suggest that you reach out to Bladder Cancer Canada via their toll free number and ask to speak to a patient volunteer who has had muscle invasive bladder cancer.  They may be able to give you more information than either Joe or I can.  Best Wishes going forward and don’t hesitate to post questions here as you have them.  No question is a dumb question.  (((HUGS)))

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