Just diagnosed, mother of two small kids

I am so glad I found this site. I was diagnosed on May 1st with Stage T2b invasive urothelial carcinoma. I am otherwise in good health, have good insurance and a wonderful family and support network. I know how blessed I am to have all these things-- there were definitely times in my life when this diagnosis would have shattered me emotionally, financially, or both!

The irony is that what gives me strength is also my biggest worry. My daughters are seven and two. Is there anyone here who can share with me what it was like do undergo chemotherapy and radical cystectomy with small children in your life? I have so many questions about *everything*.

I'm so grateful to have access to this resource. Thanks so much, in advance, to those of you who respond with advice, and to those who keep this site up and running. Best of health and healing to all!

Betsy

Report post

13 replies. Join the discussion

Betsy,
I can imagine what a state of shock you must be in having just been diagnosed with bladder cancer at such a young age. I welcome you to Inspire! You have found the best support group on the web for bladder cancer. At this point in my bladder cancer journey, which began in November 2010, I have not had to have my bladder removed. However there are many members on here who have faced what you are now facing, have had a radical cystectomy and are now going about their normal lives. Many will soon be responding to your discussion and will offer you support and share their experiences and offer you the best advice you could receive anywhere about this disease, firsthand.

You will be in my thoughts and prayers!

Kathleen

Report post

Betsy,

I see you are from Duluth - my husband and I are from Morrow - so not too far from you!

Although my husband has gone through both rc and is now presently going through chemo, our two children are grown and married, and we have 1 grandchild. He is 54, and I am 53.

I CAN, however strongly suggest that you make sure you have someone to take care of both you AND your children while you are undergoing chemo. Chemo, at the very least, makes you extremely fatigued, taking care of a 2 and 7 year old is just going to be too much for you to handle. You will also need someone to take care of your children during your surgery, which will be at least a week in the hospital, and I would say at the very least 4 to 6 weeks after surgery while you recuperate. You will be unable to lift either one of your children, and will also be trying to adjust to the "new normal" of your rc. The emotional challenge of adjusting to your rc will be just as exhausting as the physical aspect, so you will definitely need someone to take over for the caring of your children during this time.

You stated that you have a wonderful family and support network - I would definitely take advantage of that, you will definitely need it. You are still young, and seem to have a good attitude, and that will go a long way toward recuperating from chemo and rc. It is not an easy road, but with support (both emotionally and physically) you will get through it.

There are many here who have been through rc and chemo, and are living full lives with their "new normal". I'm sure others will chime in soon and give you alot of support and good advice.

If you have other questions, don't hesitate to post - we are here to help you in your journey, and will do our best to help guide you through.

Gayle

Report post

Betsy,
I am sorry to hear of your diagnosis. There are, however, many things you can do to help prepare for your surgery and to lay the foundation for beating bc. My dad was diagnosed in May 2010 and he continues to lead an active, happy life, albeit a different life. I will share with you his experiences in the hope that you will derive some good information from what he has experienced in order for you to choose the best path for you. Dad's story is a long one, so I will lay it out in bullet point form.

- late May 2010 bc diagnosis
- surgery June 15 at a general hospital facility - not a cancer center to remove the cancerous bladder and create a neo bladder from part of his colon
- post op the surgeon advised dad he was cancer free, and the cancerous bladder had been removed intact, and the cancer had not spread outside of the bladder
- 4 episodes of unnamed "infections" each involving hospital readmission; months of trauma with the neo bladder (mucous, blockages, etc etc)
- on last admission for an "infection" PET scans ordered and the oncologist tells dad the results show cancer in 9 spots throughout his abdomen (recall the original statement post-op that the cancer had not broken through the bladder wall and the bladder was removed intact)
- oncologist suggests dad return home (he was an international patient) to his country and put his affairs in order - UNACCEPTABLE
- we start dad on a regimen of turmeric and vitamin D, eliminate gluten, dairy, wheat, sugar, processed foods, additives, preservatives from his diet and significantly reduce the amount of meat he consumes 
- dad sees new doctors ( oncologist, urologist, urologic surgeon) in a different State who tell him he shouldn't  give up (which he practically had done)
- one round of chemo 
- surgery performed to remove the troublesome neo bladder - doctor reports that there is NO SIGN of cancer in the abdomen any longer. A MIRACLE.
- chemo and radiation treatments are given prophylactically to address any stray cancerous cells that are not identified bynthe PET scan
- May 2012 dad is active and doing well, albeit he does have daily difficulties resulting from 2 feet of his colon being used by the surgeon at the first general hospital to fashion what other doctors refer to as a "very large neo bladder" ( hence the commercial grade production of mucous)

The reason I have shared dad's experience with you is to help you to decide the path to recovery that you will choose for yourself. Given what I have learned from dad's experience, if I were diagnosed with this I would do the following:

1.  Hire a babysitter / nanny / housekeeper for my young children and to keep my home in order and help my husband. Rely on family support for all the little extras you will need as you go through this process. Hiring someone will put your mind at ease and give your family time to be there just for you.

2. Get an appointment at a cancer center to see one  of the top surgeons / oncologists practicing in then specialty of bladder cancer. See US News and World Reports for info. on top ranked hospitals by specialty. MD Anderson in Texas and Sloane Ketterng in New York are consistently top ranked Cancer Centers. Based on dad's experience I would opt for the removal of the bladder as my first step, and I would not choose a neo bladder.

3. start taking turmeric and vitamin D. 

4. Prepare physically for your surgery: Dietary interventions - Eliminate gluten, dairy, wheat, sugar, processed foods, additives, preservatives. Reduce or eliminate meat. Eat as many green leafy vegetables as possible. Start juicing. Read The China Study by T. Colin Campbell for the science on this. 

5. Prepare mentally for surgery: yoga, meditation, quiet time for me.  Be positive.

6. Spend quality time relaxing with my children. 

I wish you well in your journey. You can do this.

TM

Report post

My school daughter would come and sit with me during chemo>> she would sleep in the hospital room at night with me> She had her own life and she needed to continue that>> but we let her decide how much she wanted to particpate>>every kid is different>> she and my other college daughter would do my posting on my caringbridge.org site. Take pictures and so on..

NEO

Report post

I was 59 when I had my bladder removed so no young children. I am doing very well 3 1/2 years later. There is life after RC.
Vtom, from Atlanta, and KimberlySC from South Carolina are 2 ladies who had children though not quite as young as yours during their surgery. (Their children were around 8 - 10 I think) I would friend them and I am sure they would be helpful to you even though they don't post here much anymore. Vtom (Veronica) I know visited Kimberly before her surgery to encourage her. Meeting others who have been there and done that can mean everything for confidence and attitude. Even phone calls are helpful.
Hugs,
Nancy

Report post

Just a side note -

Someone had suggested to start taking turmeric and VitaminD - which is definitely a good thing to do - BUT - make sure that before you start chemo you ask your oncologist about taking any meds/supplements. Many oncologists do not suggest taking ANYTHING during chemo - due to the fact that most supplements have not been tested to see how they may interact with chemo - some supplements make actually counteract the effects of the chemo - therefore preventing the chemo from doing the job which is intended - and that is to get rid of the cancer/tumor/cells.

You can always start back on your supplements after the chemo.

Gayle

Report post

See some links for more on turmeric and some studies conducted. Note that many conventional doctors will not encourage the use of supplements, in fact most will tell you there is no proof that they work for x type of cancer. if you have cancer today, don't wait for the studies. You have nothing to lose by starting with turmeric today.

http://newsroom.ucla.edu/portal/ucla/primary-component-of-turmeric-215286.a spx

http://cancerhelp.cancerresearchuk.org/about-cancer/cancer-questions/can-tu rmeric-prevent-bowel-cancer

http://naturalsociety.com/turmeric-curcumin-naturally-block-cancer-cells/

http://www.cancer.org/Treatment/TreatmentsandSideEffects/ComplementaryandAl ternativeMedicine/HerbsVitaminsandMinerals/turmeric

http://www.livestrong.com/article/393513-curcumin-or-turmeric-for-cancer/

Report post

Betsy, So sorry you had to find this site, but it is the best resource for anyone dealing with bladder cancer. You are pretty unique, to be young with children, and having to experience this disease. I am currently caregiver to my 42 year old daughter, who was diagnosed with T2 high grade muscle invasive bladder cancer, and had a radical cystectomy on April 18th. Unlike you, my daughter is single, lives alone and does not have any children, but I can give you our experience with chemo and surgery. First of all, we learned through this site to seek out the best medical care you can find, at a comprehensive cancer center that has a high reputation for treating bladder cancer. Others on this site can guide you in the right direction. My daughter began neoadjuvant MVAC chemotherapy on January 4th, had 3 treatment cycles and finished on March 21st. MVAC is given to young and healthy patients only due to its high level of toxicity. My daughter experienced severe fatigue, hair loss, weight loss, some nausea and loss of appetite. Unfortunately this is all cumulative as treatment continues, and by the end of the last chemo treatment, she was in bed for 22 of 24 hours. I was able to move in and stay with her during these last few months to get her to her treatments, cook and monitor her symptoms. I am sure you will need a larger support system to assist you with your children's daily activities. We lived for small blessings, which always appeared when we least expected them! A big help to us was obtaining free housecleaning! Please register at www.cleaningforareason.org, which assists women going through chemotherapy. They will match you up with a local cleaning company and provide four free cleanings! Surgery was scheduled a month after her last treatment, and it took all that time to build her up and get her stronger for surgery. Her surgery lasted 6 1/2 hours, and she remained in the hospital 6 days. One week after returning home, she was readmitted for 3 days due to running a fever. We are almost 3 weeks post surgery, and overall she is doing well, but still experiencing low grade fever off and on. He appetite is still low, but she is making good progress, and is slowly getting out and about. She chose to have an ileal conduit, and has been doing well with maintaining her ostomy. As with any surgery, you will have the usual restrictions, so having someone to help you with your kids will make it much easier and your recovery much quicker. Through her urologist at the University of Michigan, she has been put in touch with other women who have been there, done that, and this has been a great help to her. Also, keep reading this blog, you will find a wealth of information, and whatever questions you have will be answered. People on this site are truly amazing and extremely helpful! This will not be an easy road for you, but with the help and support of your family and friends, and this website, you will get back to your (new) normal, it just may take awhile! Be strong!

Report post

Hi BrendaMI,

Thanks for sharing the information for your daughter-- especially the fact that she did MVAC instead of gemzar or cisplatin. My urologist here in Atlanta suggested I'd probably be on gemzar or cisplatin because of the milder side effects. I would have been thrown for a loop if the doctor had suggested MVAC-- but I don't care-- if I have to be sick as a dog for a few months to get rid of the cancer, so be it.

I am hoping to have the CCP, but we'll cross that bridge when we come to it.

Thank you!

Betsy

Report post

I am so sorry you have to deal with BC at so young an age. I am nearly three years post-op now and doing well. I had RC with a neo-bladder in June of 2009 and follow-up chemo after that. I was 56 at the time and tolerated both well ... there are some wonderful drugs to counteract the nausea we have all come to expect with chemo and I experienced very little during the four months of treatment. I was fatigued and just about everything tasted like "crap" (apparently cisplatin "does a number" on the taste buds!) but was able to keep working, only missing days for treatment. The key is to get yourself to a major treatment center ... this is not a cancer for "rookies"!

There is someone who sometimes "pops up" on the boards occasionally who was quite a bit younger when she had her diagnosis and if I recall she had (has) younger children as well. Annasvenska ... are you out there?

Stay tuned to the boards here as there are many out there with lots of experience and wisdom to share. You are not alone.

Report post

Hello Betsy,
Sorry to hear about your diagnosis. I was diagnosed last September 2011 and had no insurance until I found the new plan for pre-existing conditions and got on it in Nov. after having to pay for my CT scan. I had the first test done by my urologist and it showed that I had tumors in the bladder. I had my RC this past January 2012, a week after my 54th birthday.
While I don't have little children, I do have a special needs son, now aged 16 but still developmentally delayed to age 14 or so. He is somewhat capable and has been helpful. However, I did find a church friend to go be with him throughout my hospital stay. I was a week at Stanford Univ here in Calif. We live 350 north of there. My hubby is also not a well man and he is not very capable of certain things, doesn't drive anymore but he was with me in the hospital the whole week. I also had another church friend, a male, drive us back and forth and he helped with my son, too. He's like an uncle. I have no family left.
I would suggest finding some folks to be with your kids during, and after.
As of now, I am doing fine. I am back to all chores, except lifting. I had no need for chemo and chose an outside bag. I am due for my 6 month CT scan in June.
I am very spiritual and have many church friends and internet people who have been praying for me. The Lord hears you and them.
Keep positive, too.

Laurie

Report post

Betsy, a couple of more things:
My daughter is currently cancer-free! We believe the MVAC chemo prior to surgery was the key to a clear pathology report, and it was worth it! You will find your girls are not just an inspiration, but also a great help...children have good instincts and will be "Momma's helpers"! Also, you do need the best possible outcome for you. This can happen by seeking a second opinion at a major comprehensive treatment center, if you haven't already done so. This cancer is tough, and needs to be dealt with by very experienced doctors. Its important to have a surgeon who has performed numerous surgeries in this field, and an oncologist who can give you the right mix of chemo drugs. Seek out the best, as you deserve it! During the rough days of chemo, we focused on "one day at a time" to get us through, so prioritize...if you are having chemo first, that is what you concentrate on. After chemo, we focused on preparing for surgery, increasing calories any way we could, forgetting about just "healthy" foods, and getting in exercise to build her strength. It was during that time that she concentrated on making her choice for type of diversion. She opted for the ileal conduit due to the overall success rate. For her, she was not interested in the training involved in having a neo...this is a very personal decision that only you can make. As long as you research each option, you will make the right decision when the time comes. This is a time in your life when you must focus on you, and let your family and friends support you. Don't be afraid to ask for help (sometimes that is not easy for Moms to do)! My daughter is very independent, and this was hard for her to do....so be specific in your needs, and you will find your support system will get those needs met!
So start asking those questions you mentioned you had here in this Inspire group, and let this group of helpful, smart people support you, too!

Report post

My kids were seven and four, but I did not have an RC or any chemo. WIsh I could help with that!

If you are considering supplements, please consult with your doctor first. I am a strong believer in supplements, but I also know that certain supplements can interfere with prescription medications or treatments including chemo.

Report post

This discussion is closed to replies. We close all discussions after 90 days.

If there's something you'd like to discuss, click below to start a new discussion.

Things you can do

Support BCAN

Help the Bladder Cancer Advocacy Network reach its goals and support people like yourself by making a donation today.

Donate to the Bladder Cancer Advocacy Network

Discussion topics

Walk for Bladder Cancer May 3rd

Walk for Bladder Cancer

Resources from BCAN

BCAN on Facebook

Like the Bladder Cancer Advocacy Network on Facebook

Community leaders