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Homepage – Forum Forums Muscle Invasive Bladder Cancer …if you have a rare type of Bladder Cancer, post your information here. New category created to help those with a rare from of Bladder Cancer.

Viewing 15 posts - 1 through 15 (of 24 total)
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  • #42122
    Nightingale
    Keymaster

    Below are the common rare bladder cancers:

    Squamous cell carcinoma: Squamous cells develop in the lining of the bladder as a result of irritation or inflammation. These cells may eventually become cancerous. Although squamous cell carcinoma is uncommon, making up around 4% of all bladder cancers,2 it has a high likelihood of progression.
    Adenocarcinoma: This type of bladder cancer consists of glandular-type cells and is usually invasive. Overall, around 2% of bladder cancers are adenocarcinomas.2
    Small cell carcinoma: Small cell carcinomas of the bladder start in nerve-like cells. This bladder cancer type is rare, accounting for less than 1% of bladder cancers,4 but can grow rapidly and spread to other parts of the body.

    There are few others that actually originate outside the bladder but less than .05 %

    Several less common types of bladder cancer make up the remaining approximately 8 – 10% of bladder cancers.

    #42891
    Chust32
    Participant

    I would be interested in sharing with others diagnosed with small cell bladder cancer.

    chuck

    #42899
    Nightingale
    Keymaster

    Hi Chuck

    Thank you for your offer.  Please feel free to post your story in here as a reply to my post.  Put as much detail as possible that you feel will help others who are looking for information from someone who has direct knowledge.  If you have any questions, you can post that in your reply for all to see, or you can private message me by clicking on the link directly under my alias ‘Nightingale’.

    My best,

    #42946
    raincity
    Participant

    Anyone has nested, large nested and plasmacytoid?

    #43423
    Debra2021
    Participant

    Hi. I’ve had Plasmacytoid bladder cancer, diagnosed May 2020 (yes, with start of Covid, fun times), chemo July-Oct, and then radical cystectomy Nov 2020 (with a urostomy). My treatments were with Princess Margaret Hospital and Toronto General Hospital (very few Urologists have experience with Plasmacytoid).

    Plasmacytoid, as you know, is extremely rare and aggressive, so my position (and also my Urologist’s) was also to be aggressive in response. If I have anything to offer in this post, it would be to be informed (even read medical studies specifically about Plasmacytoid), AND to advocate for yourself assertively! You may need to push the health care system to deal with you quickly and effectively (other BC patients have the luxury of more time to figure things out). I can’t stress this enough!

    Good news: I’m still cancer-free, as of my last CT July 5th! I’m extremely grateful!

    I’m happy to answer any questions you have, where I have something helpful to add from my own  experience. I felt fairly alone and isolated going through this, (though family supported me), due to a few factors: Covid environment,  a rare diagnosis so only a few studies to learn from, being a female patient in a very male centred disease, and 55yrs old which is younger than most patients (I was told the average patient, per statistics, is a 70 yr old male, but there are younger patients as well).

    Wishing you the very best…Debra.

    • This reply was modified 1 year, 10 months ago by Debra2021.
    #43425
    Nightingale
    Keymaster

    Thank you Debra2021 for posting your reply to Raincity, it is very much appreciated.

    My best,

    #43436
    Joe
    Participant

    Hi,  Debra,

    Were yo diagnosed as T1HG at the initial diagnosis?   Did you have just cystectomy or radical cystectomy?

    FYI, below is the treatment flow for non muscle invasive bladder cancer with variants by MD Andersons Cancer Center in Texas.   They recommend  cystectomy for Plasmacytold. Micropapillary and Sarcpmatoid  variant, but different route to other variants.

     

     

    #43454
    Debra2021
    Participant

    Hi,  Yes it was T1HG, and a radical cystectomy. I’ve seen the recommendations you provided from MD Andersons. I did research into the studies from the best cancer centers worldwide, though they are few on Plasmacytoid as the cases don’t provide a huge study per Center. Then I assessed my options, discussed with my family and my Urologist (top surgeon), weighing the potential outcomes and risks,  and then decided I wanted to make a radical decision and fight big. I wanted to eliminate the possibility, as much as I felt was possible, of having a recurrence (Plasmacytoid is very aggressive). I wanted no regrets, believing that I did everything I could, including chemo and didn’t give it a chance to win or comeback. These were very personal decisions, as I believe that every patient needs to make. It’s different, for each person.

    #43533
    Tanya187
    Participant

    Hi all, I a 53yr old Canadian living overseas and have been diagnosed with squamous cell carcinoma of the bladder. To add to this, I have a kidney transplant that I have had for 30 years. I am  looking to connect with anyone who may be in a similar situation or been through something similar. I am due for radical cystectomy and urostomy, but the transplant is a complication and I would love to correspond with anyone who understands this situation. Thank you.

    #43564
    syldaughter
    Participant

    Hi Everyone,

    My father has the micropapillary variant.  We did not know this until after his radical cystectomy in June of 2017 (age 75).  He was staged as PT3B N1 after surgery and that’s when we found out that he had the aggressive micropapillary variant.  We asked for a 2nd opinion and we had his tumour slides sent to Johns Hopkins for confirmation (which we promptly received).  He was enrolled in the Tecentriq adjuvant trial at Sunnybrook.  My father is not eligible for Cisplatin because of his hearing loss and therefore did not receive any neoadjuvant treatment.  He progressed in 2018 (soft tissue mass in his pelvis as well as some inguinal nodes) and was given Carboplatin/Gemcitibine.  He tolerated and responded well to four treatments.  In 2019 he received radiation for the pelvic mass as well as an inguinal node that had started to grow again.  He had another 4 rounds of chemotherapy in 2021 as well as Avelumab immediately after for mediastinal and peritoneal lymph nodes.  While on Avelumab, his lymph nodes started to grow again (after they had shrunk from the chemotherapy).

    In April, he began Padcev treatment (compassionate program).  His first cycle was very difficult on him.  His amazing oncologist at Sunnybrook reduced his dose and he’s tolerating the treatments quite well.  He turned 80 in June.  His recent scans showed that the lymph nodes shrank.  I remember reading about the Micropapillary variant and being terrified for my dad.  He is a trooper and just keeps moving forward.  We feel blessed to have met the amazing team at Sunnybrook. We didn’t know that he had a variant, but we did move quickly with a radical cystectomy once he was diagnosed.  Not sure if this is helpful to anyone.  Just thought I would share.

    Feeling blessed everyday

    Sylvia

     

    #43565
    syldaughter
    Participant

    My apologies.  I referred to mediastinal lymph nodes for my dad.  I meant mesenteric lymph nodes.

     

    #43569
    Nightingale
    Keymaster

    Hi Syldaughter,

    Thank you for sharing your dad’s Bladder Cancer story it will most definitely be helpful for anyone who might be in a similar situation.  A big congratulations to your Father for fighting the fight.

    My best,

     

    #43774
    raincity
    Participant

    Hi Debra, thanks for replying, sorry that I missed your reply until now. I had RC in May 2021, T3a, nested, large nested, plasmacytoid, CIS. I have not meet my surgeon in person, no follow up plan ( Radiology department calls me when there is an order for me, usually just IVP,  I don’t have scan every 3 month, thought) or prognosis, no chemo or other treatments at all. There was something on my last scan in Sep but I am still waiting for someone to explain to me.

    #43786
    Debra2021
    Participant

    Hi Raincity,

    Good to hear you had a successful RC in May 2021. I am concerned that you aren’t receiving regular scans (every 3months) and that you don’t have a regular follow up with surgeon or oncologist. If there was something on your Sep scan, there should have been someone in the loop to follow up with you. I have been told that we (patients) should NEVER count on healthcare professionals (surgeons, etc) to follow up with us – even when there is a possibly cancerous scan – because the state of health care is in a somewhat dire state and they may be extremely busy, overwhelmed, distracted, etc. The responsibility is always on us to contact them! I would strongly recommend that you follow up on your last scan and get a very clear response as to what the situation is, and what should happen next (depending on whether it requires another scan, or is it clear…). This process is difficult, and taking charge of your health care isn’t easy in a system that is struggling. Let us know how everything goes.

    #43789
    Nightingale
    Keymaster

    Hi Raincity,

    Debra2021 makes a very valid point.  I am surprised to hear that you have not met your surgeon (urologist) to arrange for regular checkups.  I had a visit with my Urologist every three months for the first three years, and mine was a low-grade non-muscle invasive cancer.  Have you tried to contact your family doctor to discuss your situation?

    I hope you’re able to get in to see your Urologist and have a discussion about the follow ups.  Please keep us posted.

    Thank you Debra2021 for catching this.

    Raincity – I am a ‘keymaster’ and moderator of this Forum.  I also host a monthly Support Group for the Greater Hamilton Area.  Please feel free to reach out to me by clicking on the SEND A MESSAGE under my name Nightingale.  This way you can send me a private message with your location and I can see if we the good folks at Bladder Cancer Canada can help.

    My best,

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