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Recently Diagnosed with Uterine Cancer

bak06001
Posts: 7
Joined: Jan 2013

Hello! My mom was recently diagnosed with Uterine Cancer. We do not know which stage and are hoping that it is very early on. She has her first appointment tomorrow with the gyn oncologist.  Some questions/concerns we have had over the past week:

 

1. She has had severe lower back pain/hamstring (ciatic feeling) over the past few weeks following the endometrial biopsy but not specifically from the biopsy, did any of you all experience this?

2. What was the first appointment like with the gyn onc? Pet scan? surgical date? blood drawn? 

3. Any suggestions or comments in general for how my father and I should be treating/acting around her (it is just the 3 of us, I am an only child and we are very close/3 muskateers). We spent the entire weekend together and I don't want to bombard her with too much help and make her feel uncomfortable. She does love being around us of course, but I don't want to act in a way that constantly reminds her that she might not be feeling so great. She is really tough and never complains, she also would never really talk about if she feels scared or if she is upset. My father and I are a bit more open and obvious with our emotions (babies), she has always been calm/quiet/tough/stoic, I want to make sure that I am sensitive to her feelings, but also want to be a solid source of support for her as she has been my "rock" for the past 29 years. I live about 2 hours away and plan on coming home on the weekends over the next few weeks/months while we are figuring all of this out. 

This is a really great thread. I am going to suggest she gets on here and reads some posts once she knows her diagnosis. I'm not sure if she would ever post, but eventually she might! You all are a great community and source of information/support!

 

Thank you.

vickiu
Posts: 1
Joined: Jan 2013

Hi, my Mom was diagnosed with stage 3b uterine cancer last February. Her mass was very large by the time it was caught(we changed docs) so she went through 6 weeks chemo/6 weeks radiation with an added "boost" week. The doctors didn't think she would ever become operable, BUT she did. She had a complete hysterectomy last August and while this hasn't been easy, she is now doing wonderful. She did have some lymph nodes positve for cells and they wanted to do more chemo but she decided against it. I don't know how old your Mom is but mine will be 71 in March. Chemo done quite a number on her but she's a fighter,..hasn't had chemo since last March and her scan a few weeks ago showed nothing. Yay!!

You ask what you can do for her?? Be there for her but at the same time, let her be the Mom. While we took care of Mom when she wasn't doing well, she hated it. SHE was used to taking care of us and this was hard for her to cope with. Tell her the most important thing to do is stay positive! Even the bleakest of diagnosis turn out fine(like my Mom) Please feel free to message me with any questions. I remember how worried I was but I only had my family for support. It would of been nice to have someone outside to help. Give your Mom plenty of hugs! They help too!

bak06001
Posts: 7
Joined: Jan 2013

Thank you for your response and information. Also, YAY! for your mom :) That is very encouraging. My mom is 58 and prior to these past few weeks she has been in very good health. I just worry because she seems a bit defeated and scared by the recent diagnosis and I have never seen her like that.

 

 Following the initial appt today, I will probably have a lot of questions to ask everyone about treatment/surgery etc.

 

Thanks!!!!

bak06001
Posts: 7
Joined: Jan 2013

Her ob-onc appt went really well today. She sounded in really great spirits afterwards. The plan so far is just to go forward with a total hysterectomy and sample the lymph etc. Dr. believes he can do this laparoscopically. My only concern is that they are not doing a CT scan prior to surgery. Is that normal? I know from reading online that it seems as though some surgeons do/some don't. I feel as though you should know what you AREN'T dealing with prior to deciding if you are going to go in laparoscopically vs. abdominal vs. da vinci ( I am still new to the options, forgive my ignorance). He appears to be trained in all of the different methods and has Da Vinci access. From what I've read I am actually most comfortable with laparoscopically for her since that is apparently the best option, but I just wanted to see if anyone had any experiences to share.

Should they ask for the CT prior? She is going in for chest x-ray and bloodwork next week at pre-op. 

 

 

Surgery scheduled for February 8th and we go from there!

 

NorahS
Posts: 93
Joined: Dec 2012

Glad your Mom is able to have a laparoscopic - recovery time (as with the Da Vinci) is much faster than an abdominal.  

Your Mom appears to be in good hands with her gyno-oncologist and you report that "she sounded in really great spirits afterwards" - which is REALLY important (gotta have confidence in your doctor). 

It appears that it's full steam ahead for surgery February 8th and I wish her all the very best.   

 

 

sunflash's picture
sunflash
Posts: 142
Joined: Aug 2011

I had my hysterectomy via davinci. The recovery time wasn't bad at all.

As far as your question concerning a CT scan, I don't think it would hurt to call the doctors office prior to the preop to ask about it. I didn't have one before my surgery since cancer wasn't suspected. But I had had one 5 years earlier, and my doctor gave me a scan after the hysterectomy and compared the two. 

In any case, it sure wouldn't hurt to ask.

 

Best wishes for you and your mom!

 

 

susangr
Posts: 58
Joined: Oct 2010

It would be interesting to know what percentage of us had a CT, PET or PET/CTbefore surgery. I had a CT of pelvis, abdimen and chest as part of the diagnostic work up prior to surgery and then at the end of chemo/radiation. It helps to determine if there is an tumor elsewhere and helps to determine the size/location of the mass. gives them a baseline to compare from. I had the De Vinci approach and was out of hospital within 24 hrs.

Hybridspirits's picture
Hybridspirits
Posts: 142
Joined: Nov 2012

I had an abdomen, pelvic and chest cat scan and colonoscopy before suregery as my D&C confused most as there were more non cancerous cells than cancerous cells.  they were rulling out it coming from somewhere else

however, post surgery they found the answer that it was very early stage and confined to just a tumor that turned to polyp.  the rest of the lining was clean,  hence the reason for many noncancerous cells in the scraping.

 

i have found that asking the questions to understand why and why not is the best approach.  If you dr says no to cat scan before,  you could ask why do some do it before, what do you gain versus the same question with the cat scan post surgery or treatment.   In the end i have found dr's might not offer information but if asked take the time to give the information. 

 

 

nancibee's picture
nancibee
Posts: 48
Joined: Sep 2012

All I had prior to my total DaVinci hysterectomy was an endometrial biopsy which diagnosed clear cell carcinoma. Surgery pathology superceded with UPSC. So I had a CT scan prior to chemo with a follow up MRI to be sure that spots on my liver were only benign hemangiomas. Both confirmed that the cancer was 100% resected and that chemo was adjuvant only.

I will not be having CT scans post-chemo unless I want them because I am stressed worrying about remote recurrence. My gyn/oncologist prefers exam and CA 125 because of the intense radiation. She also says that by the time things show up on the scan, I most likely will already have presented symptoms. However, if I am feeling so stressed, which can aggravate cancer and possibly lead to a recurrence, she would be happy to have a CT scan performed.

 

I am not sure why a CT scan would be necessary before surgery. It was the diagnosis from the biopsy of an aggressive form of cancer that led to my surgeon's decision to have a total hysterectomy. Maybe I am different but when she showed me her human body model and explained that the treatment was to remove everything including the tubes and the lymph nodes, I did not question it.  So a CT scan would not have changed this. The CT scan was useful only after surgery when it was needed to see if the surgery had gotten all of the cancer.

 DaVinci recovery was difficult for me. I don't know why because I am very fit. I was supposed to go home within hours of my surgery but passed out in the recovery room on my way to the bathroom so they made me stay overnight. Then I needed a blood transfusion because my hemoglobin dropped. I had to go back to ER after surgery because my lower torso turned purple and I was bleeding and had a fever which turned out to be a large blood clot near my bladder. Maybe because I was giving myself Avonex injections for my MS which have side effects of flu-like symptoms - chills and fever. In any case, even though I did not think that I would for awhile, I survived and am back to my almost normal self - hiking strenuous hikes. My advice, which I didn't take myself, is even though DaVinci is minimally invasive, it is still major surgery and someone who has it needs to take it easy and not overdo it afterwards.

 

Double Whammy's picture
Double Whammy
Posts: 2259
Joined: Jun 2010

prior to surgery, but in hindsight I don't think there was a reason to be suspicious of culprits out and about and there was nothing to prompt any scans after.     I've never had a CT scan and don't feel at all apprehensive about that anymore.  It's been 2 1/2 years with NED so I am now pretty relaxed about all of this.  I also had early stage, low grade endo cancer which has a very good prognosis and that certainly helps. 

As an aside, I get yearly breast MRIs for my breast cancer follow up and other organs are visualized (liver, lungs) and the rreport will comment that there was no evidence of metastatic disease in those organs and I DO breathe a sigh of relief about that in terms of both breast and uterine cancers. 

Suzanne

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