Recently Diagnosed with Uterine Cancer

CheeseQueen57 said:

Been there Done That

Hi Staci

You really don't have an idea of your stage until after your surgery. As far as I know the degree, amount, or type of discharge makes no difference on the stage of your cancer. Some women have no bleeding or discharge and some have bleeding (I did as my first sign). My surgeon tried laparoscopic surgery (which many say is a breeze) but got in there and found the cancer was so extensive that she had to do a total abdominal incis much like my c-section. I was diagnosed with Stage 3C, Grade 3. I cried. Remarkably, even with the abdominal surgery, I traveled to Italy 3 weeks later for an 8 day vacation before starting chemo. I underwent 14 weeks of chemo with carboplatin/taxol and I will admit it was no picnic but not as bad as I thought it would be. Yes, I lost my hair but I never vomited and survived. I was supposed to get 18 weeks but I had a minor stroke that left me with a little expressive aphasia but no other disabilities thank God. I then had 28 days of external radiation- again no picnic. Had a lot of nausea but again never vomited. Then 3 internal radiation treatments which is not as bad as it sounds. 

Side effects:  I had an insufficiency fracture of my sacrum which has healed. I had some bladder issues that have pretty much resolved. I had swollen optic nerves that has pretty much resolved after a year with some minor permanent peripheral vision damage but that was due to a medication that the cardiologist gave me for a-fib because of the stroke. I have very minor neuropathy in my toes that really doesn't cause me any problem. The internal radiation has caused some pelvic issues which I'm dealing with through pelvic floor physical therapy. I had my surgery on St Patrick's Day 2016 And finished frontline therapy on November 1, 2016. 

I'm walking 2 miles a day and just got back from an Alaskan cruise and plan on going to Spain for 2 weeks on September 15. I had my lasted CT scan on Thursday and see my docs on this Wednesday. I'll celebrate my 60th birthday on Saturday and no matter what the doctors say on Wednesday I'm going to Spain. Last year was the year from hell but I'm thankful to be alive and I'm determined to stay that way as long as I can. In my darkest moments, I did consult with a psychologist which I found very helpful. I remember my only relief being sleep and waking up every morning with the thought that I have cancer. Your life has changed with that thought but try to not let it ruin beautiful things you have in your life. Don't let cancer take that away from you. 

I will be praying for you as I do every sister on this site. You are not alone. Please keep us posted. 

Cheese

Hi Cheese.  Thank you for telling me some of your journey in your cancer treatments.  Yesterday I was a complete basket place when I saw what looked like a kind of brownish discharge since I never experienced that before and took it as a bad sign, but I know more people than not experience abnromal discharges or bleeding with uterine cancer, yet I thought I was the exception and that was a good sign.  I know I can't be staged until I have surgery, but my D&C stated certain things that looked encouraging as far as predicting how aggressive things looked and the fact that I had no bleeding what what I believed to be a good sign until now.  I have had two c-sectons myself, so I have experienced abdominal surgery and kind of know it is no picnic, but my incision is a bkikin incision and I am not sure if abdominal surgery for a hysterectomy is quite the same thing in terms of the type of incision that is made.  I give you a lot of credit being able to do what you have done, including travelig to Italy before starting chemo.  It shows me that you weren't going to let cancer overrule your life and you intended to life it to the fullest despite what you were facing.  One of my absolute biggest fears besides the cancer showing any spread is having to go through somehting like chemotherapy since I absolutely hate throwing up and actually have a severe fear of it.  I know there is a name for that phobia and know not everyone throws up, but that scares me more than any other possible side effect from chemotherapy that could be experienced.  As I was reading about some of your side effects from your treatent, I was amazed at how well you seem to have handled it, but I guss you had no choice since you don't seem like you are the type of peron that wants to dwell on what you can't do, but the type that wants to do everything you are able to do.  It's funny that my husband wants to go on an Alaskian cruise as well and we had been talking about it for a while.  I do have a daughter getting married next July and will be having a destination cruise wedding, yet even though I just got this diagnosis, I am going to assume no matter what, I am going to be okay and will be going on that cruise as oppsed to thinking the worst and not being able to go. I guess like yourself, I have to live my life and not let the cancer I have control me if I can help it. I virtually spent my entire summer worrying about what woudl ge found since I had several delays in getting my diagnosis, yet I tried to live as normal a a life as possible, including going to a lot of parties, having a lot of barbecues and having an engagement party for my daughter, even knowing what I could be facing.  I guess I am like you in the respect that I can't stop my life and stop doing the things I like becuase I have cancer. I think it is wonderful that you will be going to Span for your 60th birthday.  I also have a 60th birthday coming up next March and hope I have a good reason to celebrate my big day.  I find when I am sleeping, it is an escape from the reaslity of my situation, but admit as soon as I wake up, the first thing I remember is I have cancer and I get this knot in my stomach when that happens.  I would love to wake up and be able to say I am now cancer free and healthy, but all is not lost since I still don't know what my diagnosis is going to be in terms of staging and what will follow after I have my hysterectomy, which is still not schedued yet since I am first seeing the oncologist for the first time this Friday. 

This site has really helped me a lot in realizing I am not alone in this fight.  It is very encouraging to read stories of people like yourself who have not let cancer taken over their life's.  I know I have two options in all of this and the first is to sit here and feel sorry for myself, locking myself in my bedroom and sleeping my sorrows away, or fighting this and trying my best to enjoy my life the way you have been doing.  Thnak you for your words of encouragement and Happy Birthday to you.

Lou Ann M said:

He found a small tumor on my

He found a small tumor on my cervix when he was doing an internal for the yeast infection.  He touched it and it start to bleed .. he gave a a prescription for the yeast infection and antibiotics for the UTI that I also had and had me come back in four days for a biopsy.  He had me come in early that day because he was leaving on vacation and want to do this for me before he left for Three weeks.

Wow, it is a good thing you went to your GYN when you had the infection.  Many times  when I have had a UTI or yeast infection, I just go to my regular doctor and without being examined I am given medication just based on my symptoms or through a urine test in the case of a UTI.  I never go to the GYN for things like that, but I guess that has all changed now since I will probably be going to the GYN a lot now and will likely have to do that for a long time since even if I am cured, I know I will have to be watched carefully for years after that.

hopeful56 said:

Hi StaciLynn:

Hi StaciLynn:

Thank you for your reply.  I understand your concerns having to have a hysterectomy and what to expext. after.  I too had two C-sections and yes it is similar to recovery.  Diffrence is with the robotic, there are incisions around your abdomen (belly button) done with robotic arms, controlled from a panel the surgeon uses.  I am in my 10th day post surgery.  I was already up  the nite I had surgery. The next  day I was up on my own able to  walk in the room and was discharged that day.  You won't be released until you can be mobile and respond to oral pain meds.    I was fortunate enough not to use the oral narcotics, just switched in between tylenol and motrin.  I found motrin to be the best as it helped with the soreness and muscle discomfort.

I can describe the uncomfortness between menstrual bloating and pulled muscles.  My right side had a lot more sensitivity, I have 3 incisions on that side.  I am going to say go with what will give  your comfort level.  Mine never reached a 4/5 and then took pain meds as I described. I ate light ...yogurt, soups, crackers.  My son bought an e z gripper or grabber to help me reach things for as simple as trying to pick up a tissue from the floor.  Just don't over do it.

I also live alone having been widowed so I had to know I could be on my own.  My youngest son went back to college after I was home 2 days.  My oldest is married lives closer to me, he and his wife stayed over for 3 nites just to have them in the house.  Since then I am on my own with my son comes over to check on me.

I got a call two days ago, my pathology came back stage 1a SC no papillary.  They described the amount of cancer to me as the size of a dot that was taken out with my first procedure the hysteroscopy. With the hysterectomy and pathology from that, everything is zero, no spread, no tumors, nothing in the lining or muscles.  I consider myself extremely lucky.

I will see my surgeon/oncologist on the 12th of September.  I was told he may also want me to have chemo as a preventative.  If he suggests that I am going to do it.

As with all the ladies on this site, who share and support all of us,  I want to do the same and know we can go on this site and get the much needed support and information about current treatments.  Too much is out on the web that is dated!

I will keep you in my thoughts and prayers, as with all the women on this site.  I hope I answered some of your questions, and eased some of your thoughts as you get ready for your surgery.  Please feel free to write me anytime.

Sandra

Sandra, because I have had two c-sections, I am guessing the pain involved with a hysterectomy may be simiilar to that in a way. I also had gall bladder surgery over 10 years ago and felt I was better able to handle it since I kind of expected the pain to also be similar.  I remember after my first c-section, I had no idea it would hurt so much the first time I attempted to get out of bed, but it got easier.  When I had my second c-section years later, I was better prepared for the pain and had an easier time getting up and about after that.  The same went for my gall bladder surgery, which reminded me a little bit of what I felt about my c-sections.  Is robotic surgery the same thing as having laproscopic surgery?  I am assuming it is not a full abominal cut type of surgery, but could be wrong.  I am asking because you were discharged from the hospital pretty fast and I thought with abdominal surgery, you had to stay for a few nights.  I also have two children, with one of them living at home in her own apartment downstairs with her fiance, and the other one just went back to college last week. In a way, I am glad my younger daughter is back at school to spare her what I am facing since I would rather her concentrate on college and not on what's going on with me right now.  You are very lucky your cancer was caught at such an early stage.  Do you know for sure whether your doctor is going to want you to go through chemotherapy?  It sounds like you had the earliest stage cancer possible and I know some doctors may not feel chemotherapy is necessary, yet it still may be suggested and the decision will be yours to make.  I guess you can make an informed decision based on what you are told in terms of the statistics and odds of recurrance if you chose not to have any futher treatment.  As for me, if I was told my cancer was caught at a very early stage and there was no invasion of any areas like you were told, I probably would opt not to have chemotherapy if the doctor felt the chance of recurrance was very unlikely.  If I had no choice in the matter, I would listen to what my doctor had to say if he felt it was necessary to save my life, but if he was pretty certain I would be okay not having chemotherapy I would not undergo it.  I recently bought the book Cancer Smancher that was written by Fran Dreschler who is a uterine cancer survivor.  After her surgery, her prognosis was good and while one doctor suggested internal radiation as a precaution, she was told her odds remaining in remission was something like 95 percent without further treatment and 98 percent with the radiation.  She made the decision not to have the radiation and was fortunate to have remained cancer free for years and is still healhty today.  I guess that was her indivdual choice based on the information her doctors supplied to her and the research she did on her own.   I am sure you will make the right decision that you feel comfortable with based on what your doctor goes over with you, but in the meantime, it sounds like your prognosis is excellent and I am happy you made it through your surgery and did so well, getting a great report and hope you continue to remain in good health.

hopeful56 said:

Hi StaciLynn:

Hi StaciLynn:

Surgery is  similar but different.  In summary a quicker release and recovery time based on how you feel as you recover from surgery.

I don't know yet if my surgeon will want me have chemo due to it was caught so early.  I will see him 12th of Sept.

I will think of you as you go through your surgery.  You will do well and feel better in recovery process compared to the sections.  Just don't over due it.  Get up as soon as you body tells you, at first you will need help.  Use the pain meds as you need it.  Each day you will feel better and be in the recovery process. Eat light, small meals.  That worked for me.

Thank you for sharing information with me.

 I will keep you in my prayers.

I am looking forward to your posts when you are home and up to it in recovery.

Sandra

Hi Sandra.  It would be nice if you are told no further treatment is necessary because your cancer was found so early.  I guess you will talk it over when you see your doctor in September, but I know if it were me and I was told the chance of recurrence was next to nothing, I would pribsbly not go through chemotherapy and opt for regular check ups, yet if I was given no choice in terms of a real good chance if staying cancer free, I would have to rethink my position.  I know a lot of women on these boards have gotten through it and did great, but I have such a fear of being sick and throwing up that it borders on a phobia.  Even when I had my D&C , the two things I spoke to my doctor about was to promise me I would not wake up from the procedure with a tube down my throat and that anti nausea medication would be placed in my IV so I would have less of a chance of waking up nauseous.

I will be meeting with the GYN/Oncologist on Friday and will probably have more information to share at that point.  I am starting to get very nervous now since while the process of testing has already begun, now we will be talking about surgery, what type of surgery and what I may expect to happen.  This is just so hard for me to deal with and all I keep doing is looking up facts and statistics about uterine cancer.  Maybe I am reading a little bit too much, but it is nice hearing from people like you and the other women on the boards since I feel I am not alone and hopefully I will get through this.  I appreciate you keeping me in your prayers and I will do the same for you and hope you get a great report when you see you doctor on September 12th.  I have a friend I met online through another forum many years ago that was also diagnosed with uterine cancer.  I remember she had a full hysterectomy but never needed any additional treatment, yet she has been cancer free for over 10 years now.  I have written to her and told her about my situation and she has also been very supportive and encouraging because she is a long term survivor and is doing very well today.  She was also very logical about her condition and just followed her doctor's instructions in what had to be done instead of going into a state of panic like myself.  I just keep trying to tell myself that most people survive this cancer and I will get through it as well.  Thanks for the support and encouragement you have give me.

Staci

Good morning everyone.  I have a question that maybe someone could answer for me.  Last night I was spotting again for the second time this week.  It was light and if I didn't look at the toilet paper after wiping, I never would have known about this.  This morning all is clear and it has stopped but I know it will happen again until I get treatment of some kind since I know post menopausal bleeding or spotting is not normal.  Anyway, I always seem to have a burning feeling in my vaginal area that is with me all the time.  It is much worse after I urinate, yet always there.  I feel like I have to go to the bathroom too often as well, but sometimes won't go because the more I go, the more I have to go and then the burning gets worse.  It is so much like a UTI, except for the drop of pinkish discharge I see and the fact I have uterine cancer that I suspect may be causing this to happen.  Has anyone else experienced something like this? I know bleeding and or spotting is a common symptom with uterine cancer, but what about burning?  I remember when i used to get my periids before menopause it would also burn but thought maybe the sanitary napkins caused that.  My spotting is so light now that I am not wearing any pads and only see it sometimes when I wipe to check what is going on.  I know when I am having a discharge with spotting or without since it burns more when that happens.

Soup52 said:

No, or should I say it was

No, or should I say it was kind of a symptom after all, the urinary symptom. Having to go to the bathroom a lot and stupidly I didn't know where the blood was coming from because initially it was very very little blood, but I was leaking other fluid that was relatively clear. I had the appointment with the urologist and had a procedure scheduled that I quickly realized that it was a gynecologist who I needed to see. There was no need to see the urologist after being examined by the gynecologist. While I can't guarantee that you will have no nausea if you should have chemo you should know that the doctors provided plenty of medication to counteract that. I personally never threw up though hunger was definitely diminished during chemo. Take it one step at a time. Also, I have had 2 c sections and a kidney removal for donation and my robotic hysterectomy was the easiest for me to recover from. Prayers and keep us posted.

Hi Soup52.  It's funny since I think I was kind of in denial about certain symptoms as well.  For maybe close to a year, I noticed I was going to the bathroom a lot more and thought it was a UTI.  One time the culture actually came back as a UTI and I was relieved that's all it was.  Sometimes I felt just fine, but I always felt something was a little off in terms of my bathroom habits.  I would go for many hours without going, but other times I felt like I had to go every 5  minutes.  In addition to that I noticed over the past several months I was getting a decent amount of discharge that was mostly on the watery side.  It reminded me of what I used to get when I ovulated before starting menopause, but thinner since this was not ovulation.  I convinced myself that maybe it was just a yeast infection and nothing serious.  After my D&C the discharge completely stopped for a while, however a few days ago I felt it was back.  This time when I got the discharge it was still watery, but tinged with a slight amount of pink or brown colored blood.  I never experienced this before, but it had happened twice over the past few days.  The discharge is a lot less than before my D&C and not as consistent, but now has a color I know is consistent with uterine cancer.  Before all of this happened, I was really thinking of seeing a urologist but am glad I decided it was a GYN that I needed to see.  As far as chemo goes, I don't want to think about it since I haven't even had my surgery yet.  Of course I am hoping I won't need it, but admit I do fear it.  I thought having no bleeding prior to now was a really good sign, but now I am feeling upset because I thought I would be okay if I was at the point where there was no bleeding since that may have meant this was caught super early, yet now I just don't know anymore.  It seems like more people on this forum have had to go through chemo, raditation or both regardless of the stage their cancer was staged at.  Just as an added note, when I had my sonogram the report listed several possibilities why my uterine lining was so thick.  One of the possibilities was having a polyp.  When I had my D&C healthy looking polyps were removed and the surrounding tissue looked good , so when the pathology report came back as cancer, even my GYN seemed surprised.  I was shocked at the report and even though my pathology report looks encouraging, I know I sensed relief the first  time around, but not as much this time since I have been hearing there is no way to know for sure the true stage of cancer until after surgery is done.  Thanks for your continued prayers.  i will give you an update after I see the GYN/oncologist on Friday.

EZLiving66 said:

Hi StaciLynn!  I am Eldri.

Hi StaciLynn!  I am Eldri.  Two years ago this month I had no symptoms just a general feeling that something was wrong.  My doctor had taken a leave of absense and then decided to become a hospitalist so I had to find a new doctor.  I went to a woman with a strong Romanian accent to who actually said this when I told her I thought something was wrong - "You get old!"  I left her office and never came back.  Luckily I found another wonderful doctor who took me seriously, sent me for a biopsy which came back positive for uterine cancer.  After the DaVinci assisted surgery, I danced out of the hospital.  Oncologist called me in and said I had USPC, Stage II, Grade 3.  I started chemo and made it through three rounds before my GP stopped it.  My theory is that the chemo dosage is based on weight and I'm no skinny minnie BUT I am very sensitive to medication (I break Percosets in quarters).  I think I was severely overdosed but hopefully that overdose killed off any minute cancer cells floating around.  Anyway, I'm still around and, knock on wood, still am NED.  

I wish you the best of luck.  Every day new cancer treatments are being tested.  I just saw tonight on the news that the FDA approved a treatment for leukemia where they use your own immune system to CURE cancer.  Who knows what is right around the corner?  

Please let us know how you're doing and if you need somebody to "talk" to, just send me a private message.

Love,

Eldri

Hi Eldri.  I have to admit for the first time I was diagnosed with cancer, you made me laugh with your "you get old" comment.  Of course cancer is no laughing matter, but the way you expressed what that doctor told you was actually pretty funny.  Thankfully you never went back and found A good doctor that was properly able to diagnose you. I am glad you are doing good and hopefully that cancer has been knocked right out of you for good.  I  also not exactly skinny so when I need to go under anesthesia and they ask my weight, I always add a few pounds just to be sure I am totally knocked out, yet when I go for pretesting they weigh me anyway.  

I inow they are always coming out with new treatments for cancer, but they really need to come up with better early detection tests for uterine cancer since a PAP test usually won't show it.  Mine was found through a pelvic sonogram leading to a D&C, but my PAP was normal.  It was only very recently that I started spotting and that would have alarmed me something was wrong, but thankfully my PCP took me seriously when I expressed my concern something may not be right and the process began.

By the way, i have never private messaged anyone on these boards.  How would I do that?  I am pretty new to this forum and first learning how to use it.

Thank you for writing!

Staci