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To fight or not.....

AHelstrup
Posts: 22
Joined: Mar 2013

Not sure if i am posting in the right forum as we may be dealing w/ 2 types of cancers. 

A family member was diagnosed with Anal cancer 2 weeks ago.  Since they have done a CT and CA125 test.  It now seems that there is caner in the overies and also in the abdomin.  Drs are not sure if the oviarian cancer has spread to the Anal area or if we are dealing with 2 types of cancer.  The Gyno-Onocologist is ordering a needle bioptsy to be 100% sure that it is in fact ovarian cancer.  If it is his approach is to go into surgary and remove it ALL.  Which he is saying is a very BIg surgary. And thus also making it so she would need a colostimy bag forever. And then follow with chemo and radations.  Then at the Dr to schedule the needle bioptsy they want to do a PET scan.  That dr said that he does not suggest surgery because it is really hard and hurts. But that also Checmo and radation us painful...  I think she is getting scard with all the info that is coming at her. She is saying she does not want to fight it, loose her hair and have a bag forever...

As a supporting person i want to support her decision but want to also give her positbe hope on beating this.. Any stories that you can provide of your experience is appreciated...  We are not sure what stage as every apt visit/ test only shows more issues for concern

Alexandra's picture
Alexandra
Posts: 1221
Joined: Jul 2012

I am sorry about your family member's condition. Cancer diagnosis is a terrible emotional shock to anyone and she is only 2 weeks into her journey. It is very common to go through fear, helplessness, depression and suicidal thoughts.

To fight or not to fight is a very personal decision and obviously depends on her wishes, age, overall health and stage of her disease. If she has anal cancer it's 95% curable with radiation. Ovarian cancer prognosis heavily depends on the stage; and the majority of women go into first remission after hysterectomy and first-line chemo. But the fact that she is operable is a good sign. And her chances are better with GYN-ONC doctor if she in fact has OC. Fighting is not going to be easy, surgeries will be painful, she may or may not need a colostomy bag afterwards depending on whether her bowels are involved and how high cancer is located. Hair will fall out from chemo, there will be anal and vaginal burns from radiation. There are many other side effects of treatment, some permanent, some temporary. But there are pain and anti-nausea meds, hair will grow back; life after cancer sure beats the alternative. There are many people on this board who went though all of the above and survived for years, and lead a normal life, a "new normal" for them. I doubt that anyone here will recommend not to fight.

Help her get as much information from doctors as possible. Take it one day at a time and stay strong.

Hugs, - Alexandra

Kaleena's picture
Kaleena
Posts: 1126
Joined: Nov 2009

All the information given to your family member is way overwhelming and before making any rash decisions I would suggest a second opinion.  If she doesn't want to fight, a second opinion wouldn't hurt either way.  I would also look at other information regarding chemo and radiation too.   Another thing, the new colostimy bags are designed smaller and different than eons ago.

I was told that my recurrence could not be operated on and that if I had surgery I would have a permanent colostimy.   I got a "third opinion" - (someone not associated with the same hospital and actually out of state).   They ended up doing the surgery successfully and I didn't need a colostimy.    Please note, I know everyone is different and although this was my result that different results may happen.   But I gathered all of the information that I could and then made my decision.   There was still the risk that they wouldn't be able to get it all and that I would end up with a colostimy.

 

That said, your family member will go through many emotions until she makes a decision.   Letting her make the decision will give her control of her situation but it has to be her choice.  The doctors are there to guide us but as you will see, many doctors have different opinions and options.   

Praying for your family member that she will stay positive and that her stage and grade are low.   

My best to you and your family,

Kathy

lovesanimals's picture
lovesanimals
Posts: 1248
Joined: Sep 2011

I am so sorry that your family member is going through all of this.  I recommend that you or she ask the folks on the colorectal cancer board what it is like to have a colostemy bag.  From what I gather from them, having a bag is not the end of the world but they can explain it best.  I hope she allows herself time to adjust to the news and to obtain the necessary information and not make any decisions solely out of fear.

Big hugs and prayers,

Kelly

MJensen
Posts: 93
Joined: Oct 2012

AHelstrup,

It definetly is a personal decision and I can tell you without a doubt there is pain involved but there are good days as well.  Hopefully the good days out weigh the bad days.  I was diagnosed with stage 4 Ovarian cancer with peritoneal carcinoma in Aug 2010.  They could not do surgery right away because there was so much cancer involved.  I had 3 rounds of chemo and then they did surgery.  Surgery went well with a complete hysterectomy.  Since then I have been on chemo almost full time with periodic breaks.  I have had 5 surgeries since the hysterectomy.  2 exploratory, 2 kyphoplasties (back surgery) and most recently in Jan I had my 3rd bowel obstruction from the cancer and this time they couldnt clear it. I ended up having surgery and my biggest fear was I would end up with a colostomy bag.   They tried to put a stent in but that didn't work.   I ended up with a stoma in my transverse colon.  The drs said they had very little free floating intestines to work with due to the cancer adhering my intestines to the abdominal wall.  I spent 9 long days in the hospital with this last surgery.  I was very upset to wake up and find a colostomy bag attached to me.  That being said I worked with the Ostomy nurses,googled colostomies and ultimately found so many utube videos of young people dealing with colostomies due to Chrohns disease and diverticulitis etc that I figured I should be able to deal with this at age 60. I decided if they could do it then I could.  It hasn't been easy but I have accepted it.  I am going on my first snorkeling trip next week.  

Cancer is a horrible unrelenting disease.  It brings out the worst and the best in us and can give us strength we didn't even know we had in us.  The treatment is hard on our body and mind as well as friends and family....but we get through it a day at a time.  I have never stopped working through all of this although only working part time after my surgeries until I got my strength back.  I have been on 3 awesome vacations with my family and I am going on a girls trip next week.  My CA125 is on the rise again (not stable) so I  may be running out of chemo options soon, as the DRs are saying my cancer is getting smart to the various chemos. Meanwhile, I am going to do as much as I can with whatever time I have left.  I may go on disability soon even though work has been good for me and I need the insurance.  So please tell your family member it is a rollercoaster of emotions as you go through the journey but there can be some very memorable times with family and friends that make the fight worth it.  I personally have felt like giving up several times but then find a way to gather strength to keep up the fight!  I wouldn't have wanted to miss out on the time I have had with my family over the past 3 years.  I wish you and your family positive energy to get through this no matter what she decides.  It is very overwhelming but she is lucky to have you in her support system.   We are here for you and her!   Hope and Faith!  Michele

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