Reoccurrence despite mitomycin - Fight Bladder Cancer

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Reoccurrence despite mitomycin

PaMul
PaMul

Hi everyone

I’m sorry to say my recent cystoscopy revealed two tiny tumours. It would have been two years clear so I was devastated. I know this tends to come back but we all hope it’s not going to. Next turbt (#5) is in two weeks. Anyone have something similar happen? I’d been on mitomycin monthly for two years after 8X mitomycin kick off. Previous tumours all non- invasive and low grade 2 or 1. Obviously i have to wait for the pathology to know next steps but I’m curious about what others have had. Does the reoccurrence mean BCG or a higher dose of mitomycin?

Look after yourselves best wishes

Paula

42 Replies
oldestnewest

Very sorry to hear that, Paula, but don't give up...so many new treatments etc now. See what doctors recommend next. Keep us posted and make the most of every day. Pray that you will receive the best treatment.

PaMul
PaMul
in reply to Allyp69

Thanks Allyp69 no worries i won’t give up just downheartened. I’m very grateful they’ve found it and can remove it. I have faith that I’ll be well just need longer ...

stay well

Hi Paula, this happened to me and like you I was devastated. However, they started BCG treatment with me which I was told was the next course of treatment and 18 months later it seems to be working. I wasn’t told that bladder cancer re-occurred so that wasn’t helpful, and my next check is 20th July so I always get nervous, but so far so good, and I hope they try this with you. All the best and keep in touch!

PaMul
PaMul
in reply to Letterhead

Hi hope all goes well on 20 July for you. How long is the treatment for BCG you are on?

Letterhead
Letterhead
in reply to PaMul

Hi Paula, thank you. I like this website as everyone is so supportive of each other. I’m struggling to find another lady who has experienced bladder cancer, as every time I go for a check, I’m the only lady there. I was signed up for three years of BCG, so I’ve one more to go. If they decide to give you BCG and I can answer any questions for you, then please don’t hesitate to get in touch.

PaMul
PaMul
in reply to Letterhead

Thanks so much! It’s indeed the case that ladies are the minority though I understand the numbers are growing ( not really good news). Well done you on getting through all those BCG sessions- do the symptoms really get worse. Stay well and all the best for the last one

Letterhead
Letterhead
in reply to PaMul

Hi Paula, no problem, I’m more than happy to support yourself, or anyone else going through what can be a lonely process, even though I am surrounded by people who love me. Ive found People ‘expect’ ladies to get breast cancer not bladder cancer!

When you start BCG you have an introductory 6 weeks which I didnt find too bad, then maintenance of every three months. By the time youve had so many, the treatment is every 6 months providing checks are clear. I did find it bit more uncomfortable as I went along but nothing I couldn’t handle. Take care of yourself, and let me know when your op is.

PaMul
PaMul
in reply to Letterhead

Hi

My op is 23 July 🤞

Letterhead
Letterhead
in reply to PaMul

Hi Paula, thank you for letting me know I will be thinking of you and hope all goes well.

PaMul
PaMul
in reply to Letterhead

Thanks 😊

Letterhead
Letterhead
in reply to PaMul

Hi Paula, thinking of you, all the best for tomorrow, keep in touch.

PaMul
PaMul
in reply to Letterhead

Thanks 😀

ReneS
ReneS
in reply to Letterhead

ncbi.nlm.nih.gov/pmc/articl... This is some research I found when I was looking for something else, and was wondering if St Johns wort oil can help bowel cancer could it help bladder cancer, its just one spoonful morning and night on an empty stomach. Might be worth a try, I think you have to have the liquid form.

PaMul
PaMul
in reply to ReneS

Thanks :)

Hola Paula, lo principal es que te mantengas bien de pensamiento, hasta ahora gracias a Dios no ha sido muy malo, más bien de los menos malos, esa es una ventaja, y piensa que si con 6 dosis de Bcg se van a ir bendito sea Dios, hay que dar gracias al Cielo, es como pasar unos días mal y si tomas pastillas para el dolor el día pasa rápido, descansa lo que puedas.Hoy es mi primer lunes sin bcg, no ha sido tan malo, no pienses que todos los casos son iguales, tú eres única y tú puedes llevarlo bien, pero para eso tienes que ir con buena disposición, si vas tranquila y con buen ánimo todo irá bien. Mucha suerte ya verás como pasa todo y en 6 semanas estás bien. Un abrazo

PaMul
PaMul
in reply to Charom

Thanks

mitomycin was given to me immediately after my surgeries. I was soon on a course of BCG- been almost 6 yrs and have not had a recurrence but i know it is possible. Final BCG infusions due soon....last bladder inspection was ok.

PaMul
PaMul
in reply to westseajoe

Thanks for the reply. I couldn’t have it directly after surgery as the surgery perforated my bladder 😟good luck and keep up the positive results

Hi Paul the same happened to me I had a grade 3 tumour cut out of my Bladder Followed with 6 weeks Radiotherapy after 5 yrs they spotted two small tumours in my Bladder wanted to take my Bladder out I said no I will attack it myself I took B17 Baking Soda various other protocols its been over 2 yrs I still do some of my Protocols feel fine Best regards God Bless

PaMul
PaMul
in reply to sparky70

Hi Sparky

Congratulations that your protocols kept the tumours away. Do you still go for check ups? What protocols do you follow?

Thanks and keep up the good work

sparky70
sparky70
in reply to PaMul

Hi PaMul

Hi there the main thing is I haven't left everything to the Hospital I take B17 apricot seeds every day, Every three months I go on aluminium free Baking Soda for 12 days through out this time I check my PH by means of paper strips in a sample of urine to give my PH reading as today it is 8.5 I like it at 8 and a bit under, I juice organic veg and fruit, I make my own Vitamin C encapsulated its two years or more since these growths appeared I am feeling good The hospital not happy that I have decided to treat myself so the consultant said best of luck I research constantly I talk to people all over the world that are fighting cancer I remember a friend of mine in the USA and he said to me ask the Oncologist If I have this treatment will it cure me the answer you will get I can't say it will cure but lets hope so he did not convince me So here I am doing my own thing I have spook with a cancer consultant when I had it in my heck even though you are clear it does not mean it wont appear elsewhere that was twenty seven years ago if you decide to take any alternatives along with the hospital treatment keep it to yourself because most Doctors don't agree with alternative treatment they could wash their hands with you, If you need any sites to go on let me know I know many people that have cured themselves with B17. Best regards God Bless if you prefer you can email me.

PaMul
PaMul
in reply to sparky70

Hi Sparky

Good for you. I juice veggies daily and am vegan. Books I’ve found helpful (among others) have been Radical Remission” by Dr Kelly Turner everything by Kris Carr “anti cancer “ by Dr David Servan - Schreiber . Keep well and thanks for your insights

No estés devastado, dentro de lo malo es lo menos malo, para saber qué tratamiento te tienen que poner primero tienen que analizar el tumor, depende de si es de bajo o alto grado.

Suerte es que te lo han detectado muy pronto, y cuando te pongan el tratamiento en unas semanas estarás curada del todo. Alegraré unas semanas algo molesta y luego a vivir tu vida a tope, dentro de lo malo son las mejores noticias

Hi everyone

Well I’m still in hospital but have results and they took the catheter out today so it’s a good day. Grade is as before ( thank goodness) but there was another pre- cancerous patch. 🙃Another turbt in 6-8 weeks then BCG. No nasty surprises which I’m grateful for. Any tips on handling BCG?

Wishing everyone well

Paula

Dragonslayer
Dragonslayer
in reply to PaMul

You will do fine with the BCG . I had no problem with it. Stay strong !

Hi Paula, pleased to hear that there were no nasty surprises and hope you recover well. My check last week revealed a lot of redness and some changes on the bladder wall. They aren’t sure what it is so I’m going into hospital when they can fit me in probably 6-8 weeks (thats urgent here in Bournemouth) and take biopsies.

There aren’t really any tips for handling BCG apart from drinking lots of water!

All the very best

PaMul
PaMul
in reply to Letterhead

Hi Letterhead

Sorry to hear you’re being called in for another op for biopsies fingers crossed it’s NED for you and all goes well. Thanks for your good wishes and support. My parents live in Milford on sea not that far from Bournemouth - very pretty part of the country there. Hope you can enjoy some sea breeze.

All the best to you

Thank you for your reply. I don’t know how I got to be called Letterhead, must have pressed the wrong button when I went on this forum! My names Chris. Milford on Sea is lovely too. It’s unbeleivably hot which doesn’t help much, what’s it like where you are?

Thank you for your support.

Best wishes

Hi i am a 54 year old lady who as bladder cancer , i have had two tumors removed and a course of BCG , I am due my next scope next Thursday being the 2nd to see if the cancer as returned .

Like yourselves i too am very anxious and aware that there are not many ladies on this site with the same issues. I know in clinic each week whilst i was awaiting my treatment i was the only lady there.

It is very difficult to talk about , as no one appears to understand ... so being on a forum like this really helps to know i am not alone.

Prayers and blessings to all those enduring this horrible disease , and Hope and wishes for a speedy recovery x

PaMul
PaMul
in reply to Anniemouse

Hi Anniemouse

Fingers crossed for you on Thursday really hoping all is clear. Thanks for your reply how did you get on with BCG are you still having treatment?

Al the best

Paula

Hi Anniemouse, sorry to hear you are suffering too. Like you I have sat in ‘segregated’ waiting area and been the only woman. You aren’t alone, we all support each other which is brilliant. All the best for your next check, let us know how you get on.

Thanks for the support .

The BCG was fine , no problems .

I had a scope six months ago which was all clear, so due another one on Thursday this week.

I just feel as though it is always in the background waiting to raise its ugly head , i try not to let it dominate my life but it is hard to ..... I know there are many going through even worse things and my heart and prayers go out to them . I just find it hard when i have no one who understands how i feel and people say well you had the all clear last time, i have been here before i had the all clear then it came back .... sorry to moan xxxx

Hi, please be assured that you are not moaning, this is a forum where I believe we can express how we feel. You describe exactly how I feel. When I was first diagnosed about 8 years ago, it was not explained to me that it could keep coming back I would just need the original tumour removed. It obviously did and, like you, it has been an emotional roller coaster. I have had 2 years of BCG, annual scan which was clear, so everyone told me (sometimes in patiently!) why was I worried about the next check? Well the last check 10 days ago did reveal some superficial changes which will need to be removed soon. Comparing ourselves worse off is natural but its tough in a different way for us too. Keep chatting - it always help to share with those who understand x

Hi well i had my scope today as planned and great news no sign off any tumors .

they plan to look again in six months . so for now all ok xx

prayers for all out there who need some good news .

xxx

That’s brilliant news, so pleased for you x

PaMul
PaMul
in reply to Anniemouse

Anniemouse that’s excellent news. I’m so pleased that you’re all clear. Bet you’re relieved and happy 😊

Best wishes

Paula

Sorry that was meant for Anniemouse!

Paula, so much more is being offered for bladder cancer. It is one of the most treatable cancers. People have lived with bladder cancer for years. Of course, continually being monitored. BCG treatment can be given again even after 3 or more years after initial treatment if the need arises. I said before stay away from food or drinks that irritate the bladder, no smoking. BCG treatment for some women can be hard on the outer area of the genitalia sometimes developing into what is called Vulvitis (Inflammation of the vulva. It's a symptom that can result from an array of diseases. This can include infections, injuries, allergies, or irritants). This is something that is rarely mentioned if at all.

Letterhead
Letterhead
in reply to Belfour

Ive had bladder cancer on and off for 8 years now and every check makes me feel so anxious! I had a check 6 weeks ago and they told me there were ‘superficial changes’ and I have to go in tomorrow to have it removed and sent for biopsies. Ive had two years of BCG with another year to go. At my hospital I was told they couldn’t do BCG again if I’d had three years worth, its all so confusing!

PaMul
PaMul
in reply to Letterhead

Hi fingers crossed that all is well. Best wishes

Paula

2 Yrs clean so far for me. So sorry you have to go through this again. I pray for a quick recovery and it never coming back again. Thank goodness you found it early again.

My surgeon said that BCG was the gold standard treatment. Have been treated with it for past 6 yrs- massive amounts of cancer in my bladder 6 yrs back.- after surgery BCG began- going in for last 3 treatments in a month

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