My question

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Hi everyone,

 

I am new here but I have been reading and reading. I hsve nothing but admiraation for the members of this group and hope you cna help me figure out what to do.

To mke a long and rather unremakable story short, I started habing a little spotting around Labor Day and was diagnosed with UPSC last December. I had a DaVinci robotic assisted hysterectomy three weeks ago. My surgeon referred me to one of the radiological oncologists at the hospital for an evaluation for the recommended treatment, which was vaginal brachytherapy. I wont be seeing her until the end of February (when I am 6 weeks out from surgery and presumed healed) and of course this gives me a month to worry.

The question is that everything I read about USPC says that you really have to go after it, because it has a high rate of recurrence. Why do they not want to give me chemotherapy too?

It seems to have been caught early; I was staged at T1a.  TThe pathology showed only "scattered focii" (small areas of cancerous activity )but not actual tumors in the endrometrium only. They think that the original small tumor was removed during the D & C at the first hospital I went to. Not a smidge on the other organs, omentum, washings (lavage) etc. They did a CT scan of my entire torso at the first hospital as well as a breast XRay and saw nothing at all elsewhere.

I asked the surgeon about that and she explained that in my case, since they didn't find anything at all but a few scattered focii in the endrometrium they did not want to put me through chemo if possible, but would try brachytherapy to make sure it would not spread to the vaginal cuff, and lots of testing over the next 6 months or so to make sure i has not spread.

Not so sure I agree. First of all radiotherapy is targeted, supposed to pinpoint "something" and there is nothing there in the vagina, as far as we know. Secondly, it is not unusual not to have chemo? I have read that a "sandwich" treatment of chemo and radiation is very common for people with UPSC. I am not looking forward to having chemo, believe me, but I want to make sure any cancer at all is GONE.

I am in my mid-60s. Should a new tumor pop up somewhere much later, I would be far less able to withstand chemo as I age. In addition this kind of cancer is reputed to be really really sneaky and can turn up anywhere, in my neck, kidneys, bladder, lungs via the omentum, etc. Are we supposed to wait for the surprise appearance, whiich is unpredictable, and which is not discoverable until it has a nice little set-up going in whatever organ it chooses to invade? Since the surgery was done robotically, althugh the 3D camera they use for it is amazing, how could they have seen every bit of my abdomen?

On the other side of the argument chemo is if nothing else  (and there is also a LOT of "else" ) unpleasant and uncomfortable; it damages other organs to varying degrees, and that the drugs may stop working further down the road for some people.

And am I supposed to assume that the surgeo and radiologist have plenty of experience with my disease? Ought I not at least ask them ? It is a world famous cancer hospital and everyone assumes including me that they are experts. Should I go for a second opinion on treatment?

Thank you.... please forgive me for wringing my hands here but I do have a little time to perhaps look into what might be the best tretment for me.

 

 

Comments

  • Lou Ann M
    Lou Ann M Member Posts: 996 Member
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    Welcome

    to the club no one really wants to belong to.  This is a good place for advice as the ladies here are very knowledgeable and compassionate.  Your questions are hard to answer.  You have been doing a lot of thinking.  We all spend a lot of time worrying about what is best to do.  It is pretty easy to check out your doctors.  You can google them and get all kinds of info including education and if they have had any complaints, etc.  Ask your doctor the next  you see him why they aren't doing the chemo route.  It does sound like they caught this really early and that is such good news.

    Hugs and prayers, Lou Ann

  • TeddyandBears_Mom
    TeddyandBears_Mom Member Posts: 1,814 Member
    edited February 2017 #3
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    Kinableu,

    Kinableu,

    First of all, welcome. I'm glad you found us before your treatments. So sorry you needed to though. It is great that you have been able to read through a lot of posts. Loads of information here.

    It seems like doctors all around the country have differing opinions on treatments. Especially for stage 1A UPSC. I did have chemo and brachy therapy for my stage 1A. I had mixed serous and endometrial in a polyp removed during my D&C and then straight serous in the small tumor in my uterous found during the hysterectomy.  The reason they want to do brachy at the vaginal cuff is because that is where most recurrences start first. The radiation to that area reduces the chances quite a bit. At least, that is what my radiology oncologist explained to me and why I opted to do it.  My gyn oncology surgeon said I needed chemo to have the best chance at a "cure".  I did what was suggested because I didn't want regrets later.

    Your situation may be a bit different and your doctor(s) may feel confident in you not needing the chemo for reasons that aren't obvious to us???? I would get a second opinion if you are not comfortable with this direction. This is your life and you need to be confident in the direction.  Also, I would ask your doctors any and all questions that you have. They should take the time to address your concerns and explain their recommendations in a way that you can understand.

    FYI - I have read a few studies where phase 1A patients were identified as a watch only instead of chemo. I can't remember the stats though. It has been quite a while since I did any research.

    I hope you heal well from your surgery. Please come back and let us know how you are doing and what you decide to do for yourself.

    Love and hugs,

    Cindi

     

  • Kvdyson
    Kvdyson Member Posts: 790 Member
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    Second opinion

    Kinableu, I am so sorry to hear of your diagnosis. Personally, I believe that a second opinion is in order for any and all diagnosis that could be life threatening. Cancer is one of those things. However, you may find (as I did) that a second opinion does not necessarily give you a clear road map of next steps. Ultimately, to me, having a second and then a third opinion gave me the information that I needed to make an informed decision about my treatments and I have no regrets. Hopefully you will have the same experience. Kim

     

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,398 Member
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    Hello Kinablue.  I am a UPSC

    Hello Kinablue.  I am a UPSC 1A patient who had both chemo and radiation.  Are you being seen by a gynecologic oncologist? I can't tell from your post, and maybe I am missing that, but they take additional training to deal with cancer of the female reproductive system.  If you don't have one I would ask for a referal and see him/her.  UPSC, as you have read, is an agressive form of uterine cancer.  Radiation therapy is targeted to just that area.  If a cell 'escaped' it is not going to be found with radiation.  Chemo, which I wouldn't recommend willy-nilly to anyone, does serve its purposes to treat your whole being.  

    As already said, I would recommend a second opinion with a gynecologic oncologist. 

  • rcdeman
    rcdeman Member Posts: 263 Member
    edited February 2017 #6
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    Hello Kinableu, sorry you are

    Hello Kinableu, sorry you are here, but glad you found this discussion board. I would definitely second the other's suggestion here on getting a second opinion. Although you've fortunately detected your cancer early at Stage 1A, like mentioned, UPSC is pretty aggressive. Others with similar diagnoses as you have opted to get both chemo and radiation, while others have just gotten radiation, while even others opted in not to take any treatment. Since your diagnosis is UPSC which is more aggressive, the normal "default" treatment is usually chemotherapy with maybe brachytherapy afterwards. But yes, definitely get another doctor's suggestion.

    Love,
    Rebecca

  • Kinableu
    Kinableu Member Posts: 14 Member
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    Thank you all so very much. I

    Thank you all so very much. I really appreciate your responses

    i am going to see what the radiologist advises first . I have already had three doctors The first was an inhuman who referee me to the the head gynecological oncologist st the local hospital. The one that did the hysterectomy is at a large famous specialuzed cancer hospital and a specialist in DaVinci surgery. both were fun oncologist specialists.

    I looked into some places I might go for a third opinion. All of them are espousing the minimally invasive approach. I wonder truly...  I just hope the cancer cells are minimally invasive, too.... sheesh...bless you all. And good luck to  Each of you. 

    Want to read a few of the more recent posts on this board that seem to be on this subject.

  • Kamushka
    Kamushka Member Posts: 22
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    Last chemo...whoo hoo!!

    Today was my last chemo for Stage 3 uterine cancer! I was diagnosed that stage because, although the tumor found in a polyp was cancerous, the tumor had not attached itself to the wall for a blood supply.....which was good, but the bad news was that the hysterectomy showed a less than two centimeter tumor in one of  the Fallopian tube....hence the staging and chemo.  I had a series of six chemo every three weeks. My port gave me lots of problems during that time. Every chemo brought new side effects but today I experienced an allergic reaction to the carboplatin! Didn't see that coming! Face was bright red and swollen...palms were bright red as well and itching was unbearable! I started sneezing and my nose clogged, making breathing very difficult!  Just wanted to ask if any one had such a late reaction. Thanks.....love the group...hate being a member! 

  • pgdaughter
    pgdaughter Member Posts: 22
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    One step at a time

    Hi Kinableu

    If it is of any help. My mother has USPC too. Diagnosed in Feb 2014. She had hysterectomy, followed by adjuvent chemo (carbo + taxol) and bracatherapy. 

    She did the chemo anyway even though she technically did not need it back then because we were hoping it would put her in the 60% (or so we were told if I recall correctly) of non recurrence. Unfortunately she was on the wrong side of stats, and diagnosed with recurrence to lungs in Jan this year. 

    Get as much information as you can, pray about it, make a decision and never look back. 

    Sending you best wishes

  • Lou Ann M
    Lou Ann M Member Posts: 996 Member
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    Kamushka said:

    Last chemo...whoo hoo!!

    Today was my last chemo for Stage 3 uterine cancer! I was diagnosed that stage because, although the tumor found in a polyp was cancerous, the tumor had not attached itself to the wall for a blood supply.....which was good, but the bad news was that the hysterectomy showed a less than two centimeter tumor in one of  the Fallopian tube....hence the staging and chemo.  I had a series of six chemo every three weeks. My port gave me lots of problems during that time. Every chemo brought new side effects but today I experienced an allergic reaction to the carboplatin! Didn't see that coming! Face was bright red and swollen...palms were bright red as well and itching was unbearable! I started sneezing and my nose clogged, making breathing very difficult!  Just wanted to ask if any one had such a late reaction. Thanks.....love the group...hate being a member! 

    I had 15 rounds of Carbo with

    I had 15 rounds of Carbo with Taxol before I had a reaction to it.  I insisted that it was just me, having a hot flash so at my insistence they let me try again the next time. Same thing.  After a bad experience with Doxil they tried it agian under  a desensitizing plan. Where they ran it super slow and at different rates over 8 hours.  Made it through  7 more and had another reaction.  

    So glad you made it to the last on celebrate!!

    Hugs and prayers, Lou Ann

  • TeddyandBears_Mom
    TeddyandBears_Mom Member Posts: 1,814 Member
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    Kamushka said:

    Last chemo...whoo hoo!!

    Today was my last chemo for Stage 3 uterine cancer! I was diagnosed that stage because, although the tumor found in a polyp was cancerous, the tumor had not attached itself to the wall for a blood supply.....which was good, but the bad news was that the hysterectomy showed a less than two centimeter tumor in one of  the Fallopian tube....hence the staging and chemo.  I had a series of six chemo every three weeks. My port gave me lots of problems during that time. Every chemo brought new side effects but today I experienced an allergic reaction to the carboplatin! Didn't see that coming! Face was bright red and swollen...palms were bright red as well and itching was unbearable! I started sneezing and my nose clogged, making breathing very difficult!  Just wanted to ask if any one had such a late reaction. Thanks.....love the group...hate being a member! 

    Congrats on your last chemo! 

    Congrats on your last chemo!  I hope you dance with Mr. NED forever!

    Love and Hugs,

    Cindi

  • Nellasing
    Nellasing Member Posts: 528 Member
    edited February 2017 #12
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    Kamushka said:

    Last chemo...whoo hoo!!

    Today was my last chemo for Stage 3 uterine cancer! I was diagnosed that stage because, although the tumor found in a polyp was cancerous, the tumor had not attached itself to the wall for a blood supply.....which was good, but the bad news was that the hysterectomy showed a less than two centimeter tumor in one of  the Fallopian tube....hence the staging and chemo.  I had a series of six chemo every three weeks. My port gave me lots of problems during that time. Every chemo brought new side effects but today I experienced an allergic reaction to the carboplatin! Didn't see that coming! Face was bright red and swollen...palms were bright red as well and itching was unbearable! I started sneezing and my nose clogged, making breathing very difficult!  Just wanted to ask if any one had such a late reaction. Thanks.....love the group...hate being a member! 

    YAY!!! Kamushka you did it!

    Congrats on the LAST CHEMO - that is super great news and always a reason to CELEBRATE!  (((HUGS)))

  • Hopeful162
    Hopeful162 Member Posts: 82
    edited February 2017 #13
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    One more UPSC story

    Hi, I've been away for a while, but just wanted to chime in that I am a stage 1a, grade 3, UPSC survivor who had surgery in October 2014 and went on to have three rounds of carbo taxol chemo. Originally I was scheduled for six, every three weeks, but the tumor board was satisfied to cut it back to three. My tumor was medium large, but completely confined to the uterus and no cells were found anywhere else. So my thought is that there is still a lot of varying opinion on how best to deal with UPSC. My doctors were not comfortable with NFT as UPSC has such a bad track record. I continue to check in with a pelvic, etc every six months now as I am starting 3 years NED! Good luck on your upcoming decisions. And BTW, chemo was not nearly as difficult as anticipated.

  • Kvdyson
    Kvdyson Member Posts: 790 Member
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    Kamushka said:

    Last chemo...whoo hoo!!

    Today was my last chemo for Stage 3 uterine cancer! I was diagnosed that stage because, although the tumor found in a polyp was cancerous, the tumor had not attached itself to the wall for a blood supply.....which was good, but the bad news was that the hysterectomy showed a less than two centimeter tumor in one of  the Fallopian tube....hence the staging and chemo.  I had a series of six chemo every three weeks. My port gave me lots of problems during that time. Every chemo brought new side effects but today I experienced an allergic reaction to the carboplatin! Didn't see that coming! Face was bright red and swollen...palms were bright red as well and itching was unbearable! I started sneezing and my nose clogged, making breathing very difficult!  Just wanted to ask if any one had such a late reaction. Thanks.....love the group...hate being a member! 

    Congratulations, Kamushka! I

    Congratulations, Kamushka! I hope your allergic reaction has cleared-up so that you can celebrate this wonderful milestone! Kim