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now what?

J1mme's picture
J1mme
Posts: 9
Joined: Oct 2013

I was diagnosed last year w endometrial CA.  Had surgery and against the advice of the RN in my family had series of three branch treatments.  Was told 95 percent success rate but the RN was right....hurt to urinate for month etc.  Almost a year to the day I was notified by PET scan that CA  was back needed more invasive surf to my ureter.  8  hours of surf...thankfully no colostomy bag was told moderately differentiated and two more spots not noted in PET scan.  Was to have five weeks of radiation an 12 weeks of chemo aft e r end of healing.  Had first post op check and told another mass felt.  Biopsy neg.  But change in treatment to GET and radiation.  Do not feel I am getting complete answers but also afraid to ask.  Now what?  Why change in treatment?  Internet says poor prognosis.  Can't hold urine.  Cath out one week raging painful IT I.  I LIVE ALONE IN REMOTE AREA.  HAVE Brothers and sisters...not many friends n not much money.  Want to live and scared I am dying.  Please help me sort this out.

 

 

 

 

NoTimeForCancer's picture
NoTimeForCancer
Posts: 550
Joined: Mar 2013

J1mme,

Some women here may have had similar situations, but you need to ask what kind of services are available for you.  I volunteer at a hospital and there are Social Workerss there who help the patients.  TRUTHFULLY - everyone is assigned a social worker even though they may not know it or think it is an economic issue - it's not.  Reach out to local services and don't quit until you find an answer.  Never, ever, ever, ever, ever, ever give up.

J1mme's picture
J1mme
Posts: 9
Joined: Oct 2013

Thanks for responding.  I think I have so many things going thru my head I didn't even reread what I wrote.  I am scared.  I am going to what is thought of in the Midwest as the ONLY hospital.  My sister who is an RN asked multiple times to see a social worker and I never got a visit while I was inpatient 7 days.  I have to drive two hours one way for treatment.  No one has discussed this with me only next will come HRT instead of chemo and radiation for five weeks.  They say radiation will only make me tired.  My RN sister says not so and she was right about the open sores and trouble urinating after first treatment.  No one says why this is back when I did what I was supposed to do w 95 percent cure rate.  Now recurrence one year later and all web stuff says poor prognosis but no doctor has said anything except what treatment comes next.  I don't know what to ask.  I expect mayo to tell me and give me choices and information.  I am angry and scared and alone.  I don't have a social worker in the biggest hospital in upper Midwest.  What do I do?

 

Ladies I am looking g for some help.  Can someone please tell me what to expect and how to vet through the next ten minutes jets.  How do I get anyone to talk to me?

J1mme's picture
J1mme
Posts: 9
Joined: Oct 2013

Thanks for responding.  I'm not sure if my post was to angry and I scared people way.  I am so scared and after radiation evaluation today I am not sure this is worth it enough and will alter my outcome.  I asked the doctor today and he said of course it is worth it.  But I feel like it is his job.  The internet scares me and my family doesn't want to talk about this....We were raised not to discuss feelings.  Do you think I should ask more questions.  I decided since I still have a UTI  and incision not healed to wait two weeks and then maybe start treatment.  Thanks again for chatting.

Hybridspirits's picture
Hybridspirits
Posts: 151
Joined: Nov 2012

I read through your posts again.  do you have copies of all the pathoogies and test reports (ie PET and CAT scans?)  They have to have reason for the original choice in treatment and then the new direction.  It is very scary without information for the why's.  While reading through these documents are overwhelming it sounds like your sister, an RN could help.  Than ask how the new course of treatment is intended on working,  what are they trying to achieve.  Sometimes it is to get rid of something,  sometimes it is adjunct.  The written documentation about all the treatment is scary but it doesn't mean you will get all the side effects.  But I agree it is scary to know we have to indure treatment that will bring on more problems.  The hopes for all of this is that it does bring a nice quality of life as it relates to the cancer.

I personally didn't have external radation only internal and chemo and spent a little time getting a second opinion.  I see your hospital is 2 hrs away, but is there a chance that you could get this informatoin and than decide to get a second opinion.  I drove a long way twice for my second opinion and it was well worth it.  Hang in there and take one step at a time in getting information.  Having that does help put some into perspective

 

Is it worth it you ask,  that is a personal choice.  I have been part of the YMCA LiveSTRONG program and talk to alot of survivors and can see the outcome especially folks who only did radiation and not chemo.  But that is a personal opinion

 

What I have found all during this mess (mine started with surgery on 12/12/12 and ended chemo/radiation on 5/30/2013 was to always have personal goals to get to so that treatment was just a step along the way.  it allowed me to indure the treatement and look forward to the future.    But I have to agree it is very scary and not something someone who isn't going through it can really see

hang in there,  try to get answers and if not comfortable see how far the closest place for a second opinion is.

take care

sharon

 

 

 

 

Hybridspirits's picture
Hybridspirits
Posts: 151
Joined: Nov 2012

I read through your posts again.  do you have copies of all the pathoogies and test reports (ie PET and CAT scans?)  They have to have reason for the original choice in treatment and then the new direction.  It is very scary without information for the why's.  While reading through these documents are overwhelming it sounds like your sister, an RN could help.  Than ask how the new course of treatment is intended on working,  what are they trying to achieve.  Sometimes it is to get rid of something,  sometimes it is adjunct.  The written documentation about all the treatment is scary but it doesn't mean you will get all the side effects.  But I agree it is scary to know we have to indure treatment that will bring on more problems.  The hopes for all of this is that it does bring a nice quality of life as it relates to the cancer.

I personally didn't have external radation only internal and chemo and spent a little time getting a second opinion.  I see your hospital is 2 hrs away, but is there a chance that you could get this informatoin and than decide to get a second opinion.  I drove a long way twice for my second opinion and it was well worth it.  Hang in there and take one step at a time in getting information.  Having that does help put some into perspective

 

Is it worth it you ask,  that is a personal choice.  I have been part of the YMCA LiveSTRONG program and talk to alot of survivors and can see the outcome especially folks who only did radiation and not chemo.  But that is a personal opinion

 

What I have found all during this mess (mine started with surgery on 12/12/12 and ended chemo/radiation on 5/30/2013 was to always have personal goals to get to so that treatment was just a step along the way.  it allowed me to indure the treatement and look forward to the future.    But I have to agree it is very scary and not something someone who isn't going through it can really see

hang in there,  try to get answers and if not comfortable see how far the closest place for a second opinion is.

take care

sharon

 

 

 

 

J1mme's picture
J1mme
Posts: 9
Joined: Oct 2013

Thank you for your insight and permission to ask and have some control.  I feel life I being scheduled for me with no voices.  Congratulations on emerging on the other side. My warmest wishes.

 

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