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Medical Oncologist visit

gbazyl's picture
gbazyl
Posts: 23
Joined: Feb 2018

So after waiting for two weeks I get to meet the medical onc...very nice woman.   My gyn/onc sent me there for chemo and to another for vaginal cuff radiation.  Grade 3 stage 1a UPSC.

 

Mentally I am ready and anxious to get this going and to get on with my life....she tells me that she is bringing this to the tumor review board to see if I need chemo.  It appears that during the D&C the doctor got most of everything out .....so they could not fully grade what was left.    My pathology on D&C clearly states High grade for both carcinoma and adenocarcinoma

 

However, I did some research before I went and discovered lots of cancer on my father's immediate family side and she is doing Lynch syndrome testing...the tumor board stuff was done without even meeting me.

 

Hey I dont want chemo..but I do not want to be sitting in front of her two years from now with a recurrance.....perhaps there is a quota of cases that must go to this board and I am the lucky one but it is just dragging on.

 

I left there getting blood work to see if I need iron or B Vt for the chemo.  Anyone every experience this?

 

Thank you

 

Gail

 

LisaPizza's picture
LisaPizza
Posts: 169
Joined: Feb 2018

I would have liked to have gone to a tumor board, just for more brains to input. But I wouldn't have liked waiting either! Choosing chemo or not is such a devilish pact we are forced to make, either way.

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2484
Joined: Mar 2013

Gail, can I ask what kind of center you are working with?  After a certain period of follow up with my gyn onc, I now work with a oncologist in his office.  The aggressive nature of UPSC is nothing to mess with.  While I did not run toward chemo and radiation, like you, I also wanted to rid this from my system. (In the end I did have both chemo and RT for treatment) and like you, I was 1A.  

Based on the National Comprehensive Cancer Network (NCCN) there are 3 options for Stage 1A:

1 - Chemo with/without brachy (preferred)

2 - observation

3 - External Beam Radiation Therapy (EBRT) with/without brachy

janaes
Posts: 705
Joined: May 2016

Choosing to do treatments is so hard. I had stage 2 grade 3 uterine cancer with a mix of carsinasarcoma(sp). I had a tumor boeard look at my cancer. I requested that myself because i had different doctors telling me different options. I did finally decide to do chemo. 

I know how you feel. I had many of your same feelings. I still remember thinking how i would feel if my cancer came back and i didnt do all i could.

I feel confident that you will make the right desision for yourself.  Just take things a day at a time. A moment at a time if you need to.  I remember just having a feeling to make the next step and then the next and then the next.  It was call the nurse, set up your port appointment, call your sister to see if she can babysit.  I had to do one thing at a time.  Eventually i ended up at the chemo center doing chemo. I couldnt think of the chemo appointment until the other things were done first.

Janae

Red Corvette
Posts: 105
Joined: Jan 2016

Hello Miss Gail,

For what it’s worth, Mrs. Red was staged in late 2015 after total hysterectomy with USPC 1a. We struggled with whether to do chemo and radiation, got a second opinion with both gyneoncs recommending chemo and radiation but different amounts of chemo. One said 6 carbo/taxol and the other doc said 3 would be ok. The clincher was when I asked the primary doc if it was his wife what would he do and he said no way would he have his wife do observation alone, too risky because it’s a grade 3 aggressive cancer. For USPC 1a’s doing the standard  carbo/taxol plus brachytherapy radiation, the risk of reoccurance goes down from 10% to 4% per Mrs. Red’s gyneonc. We did 4 carbo/taxol chemo treatments plus 3 brachytherapy sessions, not pleasant getting through it but completely doable and Mrs. Red has almost no current side effects and no reoccurrence to date. BTW the current standard of medical practice for USPC 1a is carbo/taxol chemotherapy plus brachy radiation therapy per the gyneoncology society group. Hang in there, you’ll get through this, as a 1a you've got the best chance for a cure.

Red 

 

Abbycat2's picture
Abbycat2
Posts: 639
Joined: Feb 2014

about a research study on various treatment outcomes for the different stages of UPSC . You might want to read it. Go to http://meetinglibrary.asco.org/content/100898-114. You can also find it by selecting Discussion Board then select Uterine.  At the top of the page type the title Research study on UPSC. That should bring up my post.

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2484
Joined: Mar 2013

GREAT directions, Abbycat.  Here is a link to your thread:  https://csn.cancer.org/node/288706

Abbycat2's picture
Abbycat2
Posts: 639
Joined: Feb 2014

with your techy skills! Thank you! BTW, in June I will be returning to Indiana, where I lived for almost 25 years. Yep, I’m a Hoosier! I hope to meet you in person when I visit your town. Thank you for being such a caring and helpful member of this Board. You are always there helping the newbies (and old timers, too, like me) navigate this incredible journey we never thought we would embark on. I sure appreciate you..

With Love,

Cathy

MAbound
Posts: 732
Joined: Jun 2016

The blood work for iron and B Vitamins is not testing I had prior to chemo and I don't think I've heard anyone say they had it since I've been on this forum. Kudos to your doctor for doing it! 

I don't know as much about the role iron plays in chemo, but I think TakingControl58 might know about that. Hopefully, she'll stop by to help.

I do know that age over 50, cancer, surgery, and chemo are all factors that play a role in B12 conversion from its active to its inactive form that does you no good and it's poor absorption from food. Low levels play a role in susceptability to neuropathy and there are studies that show that B12 shots and supplements can lessen neuropathy if it occurs, although very slowly. (Think like 60 days for it to have even a minor impact on existing neuropathy).

I had both monthly B12 shots following my 1st chemo infusion till I finished chemo as well as taking 3000mcg. daily orally which I still take to this day. I can attest to it helping a lot when I developed severe peripheral neuropathy after that 1st infusion of carbo/taxol. I've posted on this subject a number of times in the past if you want more details and links, but you'd have to go hunting for them as I don't know the node numbers. I'd go dig up the research I have, but I'm in the midst of moving out of state and most of my paperwork is in a box at the house I'm not at, so I don't have access to it at the moment.

Current lab tests don't distinguish between active and inactive B12, so being in the normal range won't really tell you where you're really at. B12 is a water soluble vitamin with no upper tolerable limit so taking oral supplements of it is pretty safe. You need to be careful with the folate and B6 vitamins though, because they do have upper tolerable limits and taking too much of those can actually contribute to neuropathy. 

If you have time, I'd also look into cold therapy, i.e. ice slippers and mittens to have during infusions to prevent neuropathy. They aren't cheap and are a hassle to deal with, but they really work. (I didn't get mine until after the 1st infusion to keep the neuropathy from getting progressively worse.) They have ice caps for not losing hair, but all of this gets quite expensive and dealing with temporary hair loss didn't seem so bad to me. I missed my eyelashes and eyebrows more, to tell the truth.

I have a grade 3, stage 3a endometrial adenocarcinoma. I'm almost 2 years out from chemo now and still NED. Chemo and radiation aren't easy, but neither is the worry about recurrence. It's been worth throwing the kitchen sink at this monster, to know I did all that I could, to be able to get on and live my life with some hope that I'll be ok for having gone through it all.

Best wishes to you as you go through treatment. We're all here for you to help you get through it.

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