Any UPSC 1a who did observation rather than chemo/radiation

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  • Kvdyson
    Kvdyson Member Posts: 789
    Good luck to you, Donna. Keep

    Good luck to you, Donna. Keep us posted on how you're doing. Kim

  • Immdc
    Immdc Member Posts: 3
    edited March 2017 #23
    Just diagnosed

    i was just doing diagnosed with serous carcinoma. It was only a 2mm invasion of the myometrium. My gyno oncologist recommends 18 weeks of chemo and 3 weeks of radiation. My breast oncologist, who treated me for breast cancer in 2010 (lumpectomy, 6weeks chemo and 6 weeks radiation) thinks we can observe it because it was so small. I don't know what to do. 

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,352 Member
    edited March 2017 #24
    Immdc, a gynecologic

    Immdc, a gynecologic oncologist specializes in cancer of the female reprodcutive system.  I am sure you trust your breast oncologist for getting you through that cancer in 2010 but please be open to someone who sees gyn cancers everyday.  If your serous cacinoma is another name for uterine papillary serous carcinoma it is very aggressive and there are quite a few of us here who are (were) Stage 1a and went for chemo and radiation.  

  • Immdc
    Immdc Member Posts: 3
    18 weeks of chemotherapy

    Thanks for your reply. When they say 18 weeks of chemo, does that mean 18 treatments? I'm 54 years old but I don't think my body can handle that. It seems like overkill. How many treatments did you have?

  • Lou Ann M
    Lou Ann M Member Posts: 996 Member
    edited March 2017 #26
    It depends

    It depends on the type of chemo.  There are some that are given every week.  You  can handle what ever comes and you will find that you are stronger than you can imagine.  I was 65 when I got on this rollercoaster and am still going strong at 70.  Sending hugs and prayers, Lou Ann

  • TeddyandBears_Mom
    TeddyandBears_Mom Member Posts: 1,811 Member
    IMMDC,  If they are going to

    IMMDC,  If they are going to do Carbo/Taxol my guess is they are suggesting a smaller weekly dose for 18 weeks. I started out that way, but had them change it to the "standard" larger dose every 3 weeks after my first 6 doses. I did that because I was not getting enough good days going weekly. While the every 3 week regimine had stronger side effects, it was well worth it for me because I had about 10 - 14 days that were decent out of each 21 day cycle. I finished chemo 12/21/15. While it isn't easy, it is doable. You will be amazed at how strong you are. I was also stage 1A grade 3 and had chemo and brachytherapy. I will turn 60 in about a week and I'm doing great.

    There is a thread called 'Ladies Going Through Chemo' that has tons of information from several of us going through chemo. I hope you have time to read it. I think you will gain insight on what to expect.

    Please come back and let us know how you are doing.

    Love and Hugs,

    Cindi

  • cheerful
    cheerful Member Posts: 261 Member

    Hi Donna:  I was diagnosed in February of 2011 with Stage 1 of UPSC. My UPSC was 5 centimeters so it was very small as well. My oncologist who has since retired  highly recommended I go through 6 rounds of chemo (every 3 weeks apart) and I had 3 brachtherapy treatments (radiation).  I started chemo in April of 2011 and finished chemo the end of August and the radiation in October of 2011.  I was 59 1/2 when diagnosed.  Chemo for me was definitely doable and I got through it very well.  I was on carboplatin and taxol.  I am now 65 years old.  I am seeing a new oncologist with my oncologist's group that retired the end of 2015.  He is very nice and compassionate.  In October of 2016 (5 months ago) I was diagnosed with a reoccurrence as I had a Pet scan which picked up a very small spot in my pelvic area and spleen and my CA number was at 134 the highest it had ever been. So my oncologist recommended chemo (4 different chemo drugs).  Usually it was around 9 my blood level on a normal basis.  So since December, my blood levels started to come down to the sixty degree range and I also had 49 back in January for my blood levels so he held off chemo for me. This month it is at 42 so I probably still will not need to have chemo done for now.  I go back and see my oncologist next week as I see him once a month as well as I get blood work done once a month.  

    UPSC is a very aggressive cancer and can Highly reoccur.  For me, it was a real shock UPSC came back on me especially after 5 years since I gave up a lot of foods related to getting cancer in the first place like hot dogs, bacon, sausage, pork roll.  But if I were you, I would definitely get the chemo done - don't leave it to chance, it can come back on you.  I only had an 18% chance of it coming back on me and it did, but so far, I am very fortunate and lucky that I don't need the chemo for now since my blood levels have come down considerably since my diagnosis the end of October.  Anyway, I am very lucky at this point and am very grateful and happy and so is my family that I don't need to have chemo done as of now.  I am hoping that my number continues to go downwards. I am only a couple of points above the normal range so I am keeping my fingers crossed it continues to come down each month.

     So please consider getting the chemo done - you will have a good piece of mind to have it done and you will always wonder what if, what if, if you don't get it done and you will stand a much higher chance of the cancer coming back on you without having getting the chemo done.

    Cheerful

    a/k/a Jane

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,352 Member
    Immdc said:

    18 weeks of chemotherapy

    Thanks for your reply. When they say 18 weeks of chemo, does that mean 18 treatments? I'm 54 years old but I don't think my body can handle that. It seems like overkill. How many treatments did you have?

    I think you can see from Lou

    I think you can see from Lou Ann, Cindi, and Jane that they can vary a little in dosage but I think we have all started out with the same chemo cocktail.  I think you also see that there are a wide range of ages for women who have/are going through this.  

    I was 49 when diagnosed and it is frightening.  None of us will deny that, but you can see we have come through to the other side.  You may have other health issues that worry you, and your gyn onc should be able to tell you specifically how often, etc...I had chemo, carboplatin and taxol, every 3 weeks for a total of six rounds.  After the first 3 I did radiation and then had the final 3 chemo treatments. 

    We are here for you along the way, but please talk to the gyn onc.  They specialize in these cancers and you want to work with people who handle this kind of thing every day.  

  • Immdc
    Immdc Member Posts: 3
    edited March 2017 #30
    Ct scan

    Thank you all for your advice! My oncologist ordered a Ct scan and I'll have a better idea of what I need to do after I get the results. I'm getting use to the idea of chemo again but since I was treated with chemo for breast cancer 6 years ago, I'm afraid the cons might be stronger than the pros for going through that again. Has anyone done radiation without chemo?

  • Donna Faye
    Donna Faye Member Posts: 427 Member
    chemo to start

    My schedule is set _ 4/6;4/27/5/18; I am getting a PICC line as I do not want to keep a port in after treatment. My schedule starts on a Th. as I hope to be able to tutor on M<T<W. Have been working with a chronically ill child for 5 years and need to be strog for her as well as me. 

    Thank you to all of you as I would not have done chemo w/o your reports of your treatment. I am quite robust health wise, so everyone thinks I will do fine with the chemo, but plan to be good to myself and rest, eat well and exercise. Radiation (5) will follow the chemo so by June I will be done with it. Am already looking forward to being back on horses by fall.

    May the Force be with us all!!   Faye

  • Kvdyson
    Kvdyson Member Posts: 789
    edited April 2017 #32
    That sounds like a great plan

    That sounds like a great plan, Faye. Good luck to you and keep us posted on how you are doing. Kim

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,352 Member

    chemo to start

    My schedule is set _ 4/6;4/27/5/18; I am getting a PICC line as I do not want to keep a port in after treatment. My schedule starts on a Th. as I hope to be able to tutor on M<T<W. Have been working with a chronically ill child for 5 years and need to be strog for her as well as me. 

    Thank you to all of you as I would not have done chemo w/o your reports of your treatment. I am quite robust health wise, so everyone thinks I will do fine with the chemo, but plan to be good to myself and rest, eat well and exercise. Radiation (5) will follow the chemo so by June I will be done with it. Am already looking forward to being back on horses by fall.

    May the Force be with us all!!   Faye

    Faye - please know we are

    Faye - please know we are here for you throughout it all.  

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,352 Member
    Immdc said:

    Ct scan

    Thank you all for your advice! My oncologist ordered a Ct scan and I'll have a better idea of what I need to do after I get the results. I'm getting use to the idea of chemo again but since I was treated with chemo for breast cancer 6 years ago, I'm afraid the cons might be stronger than the pros for going through that again. Has anyone done radiation without chemo?

    Immdc, I think the majority

    Immdc, I think the majority of women have done at least chemo (since it treats the entire body - and hopefully gets any rogue cells).  Radiation is so targeted and I think that is more of all over the board with the women here.  

    I know I would struggle with wrapping my mind about going through chemo again, but in the end, I would do what I needed to do to kill the beast.

  • Donna Faye
    Donna Faye Member Posts: 427 Member
    Midnight and awake

    OK - first let me say that when I had chemo 20 yrs. ago., it was a small satellite office and I saw the same doc, nurse ,etc. every visit and they became my and still are dear friends. I am now at a renowned  teaching/ research hospital - 6 floors just for cancer patients. However, since my planning visit last Tuesday, my first plan of appt's ( I get them sent to a web page) have changed 3 times. I asked for a PICC line as a port has to stay in for 6 mos. or a year; they said OK but have to have a new one each chemo visit. OK  Now those appt's. have disappeared except for the first one. Also other things changed. I am a control freak and all these changes over the weekend when no one can be reached is scary. So it is midnight Saturday and I am wide awake and worrying - should I delay and get everything so I understand what is going on - relax and trust ( not real good at that) or what????   Have sent 2 emails to my contact nurse and will hear from her Monday, but just wondering if any of you had these same feelings at a big hospital?  I felt so in control before and now not sure that is even possible. I think I may have to take a sleeping pill or watch a movie to get my mind off this.  Hugs and thank you's  - so glad to have a place to vent my fears. 

  • Nellasing
    Nellasing Member Posts: 528 Member
    Hi Faye-

    I hope that you are sound asleep and having sweet dreams by this time.  Just wanted to drop you some love and let you know that you aren't crazy!  It is so reassuring to have a set schedule and start moving forward in your mind and to have a sudden stop due to change- it kind of causes the nerves to kick full up and those old fears to come looming in for another go at us.  Don't let it get you- turn around and face it because what I've found is if I stop and face it - nothing really has changed- it might look a little different or be up in the air but I am ok- I am safe- I am still on the same path and it will all work out.  Someone shared with me that FEAR is False Evidence Appearing Real and that helped me a lot!!!  Timing is sometimes changed for a reason and I have learned in my oh so well planned little brain that it's OK and that it will all work out as it should.  Don't know if this makes sense or helps but for whatever it's worth those are my thoughts. (((HUGS)))

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,352 Member
    edited April 2017 #37

    Midnight and awake

    OK - first let me say that when I had chemo 20 yrs. ago., it was a small satellite office and I saw the same doc, nurse ,etc. every visit and they became my and still are dear friends. I am now at a renowned  teaching/ research hospital - 6 floors just for cancer patients. However, since my planning visit last Tuesday, my first plan of appt's ( I get them sent to a web page) have changed 3 times. I asked for a PICC line as a port has to stay in for 6 mos. or a year; they said OK but have to have a new one each chemo visit. OK  Now those appt's. have disappeared except for the first one. Also other things changed. I am a control freak and all these changes over the weekend when no one can be reached is scary. So it is midnight Saturday and I am wide awake and worrying - should I delay and get everything so I understand what is going on - relax and trust ( not real good at that) or what????   Have sent 2 emails to my contact nurse and will hear from her Monday, but just wondering if any of you had these same feelings at a big hospital?  I felt so in control before and now not sure that is even possible. I think I may have to take a sleeping pill or watch a movie to get my mind off this.  Hugs and thank you's  - so glad to have a place to vent my fears. 

    Faye, I would call the doctor

    Faye, I would call the doctor's office first thing and tell them your concerns.  Ask them why all the changes and you need to know the plan.  

    I know not all the women have had radiation.  I did opt to have it and I felt as though I was getting jerked around.  In fact, one nurse was so nasty I asked to have the radiologist call me.  You say "control freak" but I think it really just have the INFORMATION and KNOWLEDGE of what is going on.  In any event, I recall clearly telling the radiologist, "This may be what you do everyday, but I assure you it is not for me.  I am ready to cancel this completely because I am not getting information."  Well that got his attention and I was given his personal cell and to call him anytime with questions - I did not use it but it was my 'ace' if I needed it and I was not afraid to use it.

    I don't know if it was because it was such a big hospital, in a large metropolitan area I did sometimes see the same chemo nurses sometime, but kept a list of their names who gave me treatment so I could give them all something after I was done. 

    Again, I would recommend a call to the gyn onc's office.  Tell them how distressing this is and is not giving you comfort that this is a good plan for you.   

  • Donna Faye
    Donna Faye Member Posts: 427 Member
    Thanks

    NTFC and Nell - I did finally get to sleep . I think the problem is the PICC line. At first they said it would stay in for the 9 weeks; then the person who does it said protocol had changed and they remove every time. Now I bet the doc said it stays in. Anyway, I did send an email that said call me Monday or delay the start until I know what is what. I am a terrible nurse and not sure I am up to flushing the line 2 times a day so am wondering if I should just let them use my tired old veins. Any way, I have now talked myself into being calm and waiting for Monday to work it out.    

    Any of you have a PICC?

    Faye

  • CheeseQueen57
    CheeseQueen57 Member Posts: 933 Member
    Consider a port?

    It just might make things easier and more comfortable for you. My opinion about the changes might be those infusion rooms are so busy and they are having new people all the time. And having to change schedules all the time for people who have had complications. I went to a major cancer hospital and despite that I got to know the infusion nurses really well plus I took them homemade muffins every week so they would remember me especially.  Hopefully once you get your first treatment and you are familiar with the setting you will feel better  

     

  • Donna Faye
    Donna Faye Member Posts: 427 Member
    good idea

    Will get my cookies baking!!  Since they want to leave the port in for months after I finish the 3 sessions, I did not opt for a port. Hopefully things will be clearer on Monday.

  • Lou Ann M
    Lou Ann M Member Posts: 996 Member
    A port?

    i have had one for a long time now and most of the time I don't even notice it. I guess it I wore a really low cut top it would show, but at my age I can't see that happening.  It takes no time to access. Only a pin prick, but some have it numbed before.  It has saved my veins and all the problems that can go with that.  Also they can be used for blood draws and even for the contrast dye the use for CTscans.

    i know how you feel about the appointment.  I like to have all my ducks in a row and had a really good infusion/oncologist visit schedule,  now that I had to have 18 radiation sessions it messed that all up.

    Hugs and prayers, Lou Ann