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words of wisdom?

cindygodfrey2
Posts: 38
Joined: Mar 2012

I have been a member here for a couple of years but due to my husbands Kidney cancer.  My 29 year old daughter has a 5 cm mass in her uterus which appears to be stemming from the cervix.  She went for a biopsy yesterday of her cervix and the doctor told her there was 'a lot of tissue there'.  She has been having irregular bleeding for about 6 months and pain she attributed to irregular periods.  This past 2 weeks she has had heavy bleeding and severe pain.  We get biopsy results on Tuesday but her doctor has already referred her to an oncologist.  No appt. yet but just wondering if you have any suggestions.  The kidney discussion board was a great help to us in what to expect for my husband.  Thanks very much and God bless you all.  

NoTimeForCancer
Posts: 406
Joined: Mar 2013

But try to tell her to take it a step at a time.  If it is a cancer see if you can find a gynecological oncologist.  You will want someone who knows about the 'below the belt' cancers.  I had posted a list of questions on another thread and if you want them please email me rather than search for them. 

Take a breath and know that the good women of this gynecological cancers (Ovarian, Uterine, and this one) are wonderful and very supportive.

ccfighter
Posts: 364
Joined: Jan 2012

I'm sorry that your daughter is having these issues.  My tumor was also 5 cm when pathology results came back from surgery, all indications from scans and exams pegged it around 3 cm which is why I was a candidate for surgery.  I was 32.  Perhaps it grew that large over the two weeks between diagnostic tests and surgery.  Remember though, it is not cancer until the biopsy results say it is, some people grow large benign fibroids, so fingers crossed for that.  If it is in fact cancer, definitely go to a gyn oncologist first thing.  Take a deep breath and hope for the best.  We will all be thinking of you and your daughter.  Hugs.

cindygodfrey2
Posts: 38
Joined: Mar 2012

Thank you for your thoughts and prayers.  We have called 911 and transported to ER twice, Friday and 2am this morning.  Her Hemoglobin has dropped down to 9.  Her gyn is going to get results of cervical biopsy today.  My daughter has no health insurance so she has applied for indigent care/medicaid.  Trying to get in with the onc gyn as well.  It's tough when you don't have insurance but we are hoping for the best today and we will continue to move forward.  I'll be back here, i am sure.

 

cindygodfrey2
Posts: 38
Joined: Mar 2012

I appreciate your words.  So if your tumor was larger, they would not have done surgery first?  I don't know the protocol and guess i am moving ahead of myself........since she has a mass on the inside of her uterus at her cervix and the gyn said "there is a lot of tissue there" when she did the cervical biopsy, i'm thinking this could be cervical......thanks again

FightingSpirit
Posts: 31
Joined: Feb 2013

Cindy,

Sorry to butt in, but I'm having flashbacks :).  My GYN said the same thing.  Going into the biopsy, we thought it was fibroids because of the location of the mass.  The original diagnosis was uterine cancer, so surgery was a given.  After surgery, the path report came back endocervical 1B1 (<= 4 cm).  I am glad for the original diagnosis since the standard protocol seems to be a complete hyterectomy and omentum removal (unless it was stage 4).  IF this is cancer (praying that it isn't), ask the gyn onc about the standard surgical procedure as well as other surgical options they are willing to perform. Although I miss my girl parts, it's great to not worry about mets to those organs.  IF it's cervical cancer, she may be given some options....not sure.

Praying for good news today.  Please keep us posted.

Hugs,

Fighting

ccfighter
Posts: 364
Joined: Jan 2012

Oncologists tend to beleive that with a tumor of  4 cm or less surgery is is a better options, and with larger tumors, that radical primary chemo/radiation is a better option because of the high potential to have positive surgical margins and lymph node spread.  Mine also started on the backside of my cervix which is why all my paps continued to be normal.  Final pathology was endocervical adenosquamous carcinoma.  

 

Prayers for good biopsy results!  Hugs.

cindygodfrey2
Posts: 38
Joined: Mar 2012

Cervical biopsy came back as cancer. They put her under general anesthesia because she was having so much pain and her cervix is extremely high and tilted.  They staged her with a manual exam at "at least a 3" . She also had a cystoscopy and proctoscopy . She has an 8cm cervical mass that has grown out and into at least 1 kidney. They gave her 2 units of blood and packed her to try to keep the bleeding under control. They will do radiation first to try and stop the bleeding. Tomorrow we talk the full plan with the whole team. We are at parkland in dallas tx. Anyone with experience there? Any words of wisdom is welcome.  It seems bleak 

debrajo's picture
debrajo
Posts: 732
Joined: Sep 2011

I am so sorry for that dx!  I was hoping for the best since she is so young. I have absolutely NO experence with anything your daughter is going through, but as a mother to six, I know how YOU hurt when your child's life and health hang in the balance.  I'm in Texas at M.D. Anderson{UPSC Uterine}.  I have really seen some miricals and blessings on this almost 5 year journey.  Don't give up...she is young and once they get the pain and anxiety under control, she will be able to beat this thing!  Never under estimate the kids today, they are tuff!  I saw you were up and figured you couldn't sleep, so I am up too{long story} if you need to talk.  Praying for a good outcome for all of y'all.  Best, Debrajo 

cindygodfrey2
Posts: 38
Joined: Mar 2012

Clinical dx of stage 3b with lymph node involvment as well. The had to give 2 more units of blood. Will take packing out today and start radiation friday to stop the bleeding. Treatment 5 x week for 5 weeks with 1 day of chemo also. Thoughts? Comments? 

ccfighter
Posts: 364
Joined: Jan 2012

remain positive.  I'm sorry that your daughter has to go through this.  She will do fine with the chemo/radiation.  It's not a walk in the park, but it is very doable.  I did the same protocol but had surgery first, plus extra chemo ahead of the radiation/chemo and behind it.  Radiation in itself is totally painless.  Some people have side effects, some don't, everyone is different.  The chemo once a week is cisplatin which for me caused fatigue and made foods and drinks taste bad.  Hydration is extremely important.  With the bleeding and anemia iron rich foods are also important, but I will say that they will probably taste bad during chemo.  Your radiation oncologist will be able to help alleviate side effects along the way, so make sure to be honest with doctors about how your daughter is feeling.

 

second opinions never hurt.  Doctors don't know everything.  Keep yourselves well informed.  The treatment protocol being offered to your daughter is the standard treatment for her stage.  Adding additional treatment before or after the standard treatment may not be a bad idea.  Carbo/taxol is commonly used as neoadjuvant or adjuvant chemo.  

 

I wish your your daughter the best and am sorry that she has to go through this.  Please let us know if you have any more questions or just want to vent.  We are all here sharing and cheering each other on.  Hugs to you and your daughter.

cindygodfrey2
Posts: 38
Joined: Mar 2012

Thank you all for your thoughts and comments.  Will be in touch again soon.  

ccfighter
Posts: 364
Joined: Jan 2012

I hope your daughter did well with her first radiation treatment and is feeling better.  Positive energy being sent your way.

cindygodfrey2
Posts: 38
Joined: Mar 2012

They didn't do the treatment.  My mistake....they did the measurements and tatooed her.  Trying to stay positive.  We did find out her lymph nodes in her upper abdomen are involved as well so she might have more side effects.  No insurance so no PET scan.  Should we try to raise money to have a PET?  Doc said it would tell her if it was curable or not.....thoughts?  We do know docs aren't always right on curing or not ... we do believe in divine intervention and miracles.  I am still wondering if anyone on this board has experience with these two facilities.  Thank you.  

Tamerlaine
Posts: 1
Joined: Nov 2013

I am so sorry your family is going through this. It makes me sick to think they won't do the pet scan because of no insurance! Myself, I was very fortunate not to have to worry about details like that. It is bad enough your daughter is sick and I hope and pray she will get the proper treatment without regards to cost. Hugs to you all

ccfighter
Posts: 364
Joined: Jan 2012

I am in Virginia and do not have any experience with facilities in Texas but have heard that MD Anderson in Houston is very good.  Hang in there.  It sounds like they have the ball rolling and that your daughter will be starting treatment soon.  Radiation to the upper abdomen May cause more side effects with nausea and bowel related issues.  I have not had radiation above the pelvis but I know other women on this board have.  Fatigue is the biggest kicker with radiation.  Rest and hydrate.

 

a ct scan with contrast is really good at picking up tumors in the body, especially if there are prior studies to compare them too.  I wouldn't worry to much about the pet scan.  Though it can show if there is abnormal metabolic activity, an ct scan with contrast is better at showing anatomical abnormalities.  

 

Good of luck to you both and let us know how things are going.  Hugs.

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