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New Caregiver
Hello everyone :) I just found this site last night. My mom was diagnosed with stage 3 BC last month. At least, as far as we know it’s stage 3. We’re waiting on a PET Scan to be done after her first round of chemo because the lymph nodes near her bladder are swollen and she’s having a lot of pain. Because of my dad’s work schedule, I’m her main caretaker at home. I also have 4 young children, so it’s getting really stressful. I’m so glad I found this site. It’s hard to find people to talk to who understand what my family is going through.
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14 Replies
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Lisa, just a quick welcome. I have been gone as my husband had his bladder removed and that pretty much took up most of my time. We are home now and he is doing great.
He had chemo before surgery and now has been declared cancer free. adjustments to a new way of life are being made one day at a time and he’s doing well with that.
I have not had to stay home with him 24/7. I’ve gone out to Curves for exercise, to my church for prayer, to the groc store for groc. He got out of the hospital on Friday and we were home Monday afternoon and it is a 800 mile drive.
What do I contribute this too! First of the willingness to ask every one we knew to pray and keep praying and to be open to those prayers, 2nd attitude on both of our parts, a positive attitude is great. He got his from his brother and I got mine from this forum and being able to vent here and by phone calls realizing what I felt were just feelings and not facts was a great help.
So keep coming and posting and hopefully you Mom will do the same and learning as much as you can from people who have gone before. Relizing everyone is different but in some ways very much the same.
God Bless you and yours
pat(justme) -
Lisa — I want to add my welcome and to respond to something you posted.
I, too, hope that your mother will join us on the forum. The forum is being
a wonderful source of information and support for me and many other
“warriers” and caregivers. I am glad you are here; I hope your mother will
join us, too — warmly — Susan (mssmr) -
Lisa i worked very temporarily for an Oncologist at a major university and this was at a time when the big “C” was almost a death sentence,…..there is so much more knowledge out there now…..still not enough but progress certainly being made. By the way he was a horrible person…had the personality of a werewolf. I used to work at the University between acting jobs as i always loved medicine…i transfered over to a happier Pediatrics!!
Pat -
They’re going to do the PET scan after she does her first 3 months of chemo. She’s already had 2 treatments (she’s getting them once a week). I’m going to ask her doctor on Monday if they can do it sooner.
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Lisa,
Sometimes the ones who work in the fields of cancer are the worst to deal with.
But she has to know this is not a death sentence, there is much hope for her. She doesn’t even know if it is metastic for sure as of yet. The chemo will do its job, then if the all clear is given she can have removal..I can’t express enough that the more experience the Doctor has the better off you are, 2nd opinions are so important..she is only 57 and has lots of living to do, when will you get the pet scan results? Ginger -
I tried looking up what turb meant and I guess I found something different then what you all are describing. Anyway, she did have that done, she was in and out of the hospital the same day. She’s putting a LOT of weight on what the heart surgeon she worked for told her about his mother. I’m trying to be optimistic. I told her about this site and I’m hoping she’ll go on here because I think it will help lift her spirits. She says she’s being realistic about what might happen to her, which is fine but I think she still kind of sees it as a death sentence. When she worked in oncology years ago, cancer sort of was a death sentence. I think she’s still got all that in her mind.
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Hi Lisa,
Just thought I would chime in and agree with Pat regaurding reasons to be positive with your Moms treatment. The cisplatin/gemzar chemo is best at bladder cancer. I think there are statistics coming in that support chemo before bladder removal to be optimum.
And as far as cancer treatment centers of america….please be sure to ask them how many diversions they do. They treated my breast cancer 7 years ago beautifully, so I spoke with them when I faced the bladder cancer. They would not give me any stats without agreeing to going there for 5 days of tests and consulting first. I declined treatment there and I don’t regret it. How experienced your surgeon is will be very important – just keep that in mind.
There is hope and many here have faced tough odds and are doing well. I think Pat just hit 5 years with her pouch :) God Bless, Holly -
Lisa, I agree with Pat she must have had a turb, did she go in the hospital for a in and out test? In order to stage it a turb is preformed. My husband was stage 3, he had his bladder removed,,no cancer in the lymph nodes and he is doing good. At 57 I think to the surgery will be good advice but of course her Doctors should be more positive about it, and advicing her, a second opinion is always a good idea as well, we only have one chance at this so best to make sure. Ginger
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Lisa…if your mom had a biopsy she did have a TURB where they resection the tumor to determine stage and grade. The chemo she’s on now is the gold standard for stage 3 and it may well destroy any cancer in the lymph nodes…she should opt for the surgery ..she’s young and they will be removing a great many nodes during the cystectomy. These doctors should be giving her a little more hope at this point. WE have MANY on this forum with stage 3 and muscle invasive who are cancer free since their cystectomys. I’m one of them…5 yrs out. She needs a pep talk…….Pat
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She has not had a turb. They did do a cystoscopy. The CT scan showed the tumor is almost through the muscle and the byopsy showed it’s high grade. They told her that after her first round of chemo they will have to remove her bladder. She told us that she won’t have the surgery if the cancer has spread through the lymph nodes. She contacted Cancer Treatment Centers of America and depending on what the PET scan shows, she wants to be seen by them. She’s worried that if it’s spread and she goes ahead and has the surgery, it will drasticly reduce her quality of life. She said if she’s only got a short time left, she wants to be able to enjoy it.
My kids are 5,6,8,&10 and I’m keeping them on a need-to-know basis. They know that she’s sick, but that’s about it. My mom just turned 57.
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Lisa,
We have another member, her name is Juliann, she also has a parent going thru similar circumstances. Look for her posts as we have been guiding her, trying to help. Juliann is 30 and her mom is 69, she has sisters and they are all in the same boat as you. I think most important is to remember she may be cranky and not herself, it may be because of her pain or just a side effect from dealing with this disease…how old is your mom.? I IMAGINE HAVING 4 KIDS OF YOUR OWN ITS VERY HARD FOR YOU TO KEEP AFLOAT!! And have a sense of humor too…as you have to when you have 4 kids..I always say take help from others if they ask, any friends, relatives who live near by, and take time for yourself, keep the kids on their schedules not to make them think things are unhappy and sad just different. I am waiting for your answers on bladder removal, if that was an option or not. and the results of the petscan..until then Ginger -
Lisa,
Has your mom had a in hospital test called a “turb”? Thats where they go up and look in the bladder, remove any tumor, see if has invaded the muscle, and stageing is done by what they find when in there. THE PATH REPORT…Do they talk of removing here bladder at this point? oR HAS THAT BEEN DONE ALREADY?? Ginger -
Well, she’s being treated at Moffit Cancer Center. The doctors treating her are wonderful, she actually used to work for them years ago at our local hopital so she knows them very well. They’ve done the byopsy and a CT scan and determined that it’s very fast growing, but the CT scan wasn’t able to show if it’s spread through the lymph nodes. A heart surgeon she was working for until recently (she’s on disability) who’s mother died of BC told her to make sure they do a PET scan because that should pick up what the CT scan may have missed. She’s had 2 chemo treatments. They’re giving her cisplatin and the other drug starts with a “g” I don’t remember off hand what it’s called. The drugs are already taking a pretty big toll on her. Her WBC, RBC, and neutrophiles are really low so she’s getting shots of Neupagen everyday and she’s confined to the house.
My biggest fear right now is that it may have spread. Like I said before, the lymph nodes near her bladder are swollen and she’s in a lot of pain. Mostly in her lower back and abdomen. Her doctors said that may mean it’s spread to her central nervous system. My sisters and I are very close with her and we’ve already been through a lot. We came close to losing our dad 4 years ago…he’s ok now, but his health is still pretty shaky. I just very scary.
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Hi Lisa,
I am glad you found us on the forum. I think we can help you deal with your moms b/c, maybe you can tell us a little more about your mom, like where she is being treated and what type of testing has been done so far, stageing, 3 is what you said, muscle invasive, and what the plan is for your mom. My husband had the same stage and now after surgery he is doing great!!!Please give us some more info!!
Ginger
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