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A quick update

Tichondria's picture
Tichondria
Posts: 39
Joined: Mar 2016

So I was able to get the path report about my cancer. Looks like I had great news. I was Stage 1a grade 1. So according to the nurse that gave me my report, I should not need anything further other  than just to follow up with my gyno/onc for my post check-up from my hysto. Now.. I will say, i'm having a little bit of a hard time liking my gyno/onc due to the fact that she is very fast talking... doesn't follow through when she says she will do something (like call me back or report to me any findings) I have had to call her a time or two before I was lucky to finally have one of her nurses call me back. So I guess I just feel that since it was such a great finding, she no longer felt the need to be personal with me anymore. Not sure if anyone else has ever  felt that.

And while I'm more than pleased about my results, I'm going to wait and see how my follow-up apt. from my hysterectomy will go with her. I have read time and again that people are watch/scanned more often for the first couple years after, like a scan every 6 months for first couple years then 1 year apart for next 3, and if still NED then it goes back to checkups done as they normaly would go. I'm going to see if she actually suggests a checkup again every 6 months or if she just  tells me since I'm NED there is nothing further I need to do. If that is the case (and this might make me sound like i'm a mean person but I'm truly not) I will warn anyone i know away from that facility and choose another.

I just can't stand doctors who treat people like a number rather than a true, living and breathing person. And dump them to the side quick as can be if nothing serious shows up. Perhaps I'm being petty, but the treatment I got from her through my surgery to now has in my opinion been horrible. I'm just wondering if I should ask for a 2nd opinion on the results of the pathology or should I accept what she tells me at face value. Guess I'll just have to wait and see. But for anyone else out there who still has to go through treatment, I wish love and healing to follow you all and I pray for NED for each and every one of you wonderful ladies.

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1641
Joined: Jun 2015

Tich, Congrats on your DX!!!! That is the best news possible for you. Time to celebrate for sure...

In my opinion, you need to be comfortable with your doctor regardless of what your medical issue is (or isn't). So, if you continue to feel that you are not getting your needs met, by all means find another one.

So happy for you.

Love and Hugs,

Cindi

CheeseQueen57's picture
CheeseQueen57
Posts: 919
Joined: Feb 2016

Congrats on that path report. I myself would probably send the slides out for another pathologist to read, just to be sure. 

EZLiving66's picture
EZLiving66
Posts: 1403
Joined: Oct 2015

The follow up care with my doctor is also the pits.  Once he does your surgery, it's like pulling teeth to get any information out of him.  He is the the only gyno/oncologist in my HMO so I'm stuck with him for the rest of the year and I love my GP who is also in the HMO. 

If I were you, I'd ask for a second opinion just to ease your mind.  I didn't ask and I wish I would have.

And....I am sooooo happy for you - that is the best diagnosis you can get with uterine cancer except NO uterine cancer - LOL!!

Love,

Eldri

ncg007
Posts: 133
Joined: Nov 2015

Tichondria...great news on your diagnosis!  i would definitely get another opinion regardless if you like your dr or not and even though your stage/grade is low.  Better to be safe than sorry.  Wishing you all the best!

Nancy

cindy0519
Posts: 173
Joined: Nov 2015

Congrats on your diagnosis!  That seem odd to type but if you have to have cancer, it being Stage 1 is something to celebrate.

I fought the urge to do this for a long time despite really wanting to do it.  Not sure why I did....I just did.  It was easy to do, covered by insurance, and gave me a great peace of mind knowing that the plan we had in place was the best for my personal circumstances. The doctor I saw for second opinion even said he would field questions anytime and I could change doctors at anytime but he saw no need to do so as my current medical team was excellent and he would always be available if needed.

 

Kvdyson's picture
Kvdyson
Posts: 789
Joined: Jan 2016

I agree with everyone else about getting a second opinion. You need to feel comfortable that you've done all that you could to ensure the correct diagnosis. Also, you deserve a much more caring doctor. I thank my lucky stars for having such a patient and caring doctor everytime I read of someones bad experience (I'm thinking of you especially, Eldri!). Trust yourself in this decision. Congratulations on this good news and enjoy your weekend!

Donswife48
Posts: 326
Joined: Nov 2015

We welcome all good news, and yours is certainly the best results that comes with a cancer diagnosis.  Enjoy the rest of your life!!!!!  Hugs Nancy

AnnNYC
Posts: 27
Joined: Mar 2016

Very happy to read your good news!  I'm just starting out so I have no valuable insight to offer but just wanted to say congratulations!  That truly does seem like the best possible outcome.  I hope I will be as fortunate.  (And yes I agree with others here how strange it is to be excited about any kind of cancer - boy has my mindset changed in just a short time.)

Hope you will do something to treat yourself today!  Smile

oldbeauty
Posts: 235
Joined: May 2012

When I was first diagnosed in 2005, I was Stage IC, Grade II.  I had a total hysterectomy and external radiation despite no finding of lymph node involvement.  I was told I was "cured" and my experience thereafter (and I moved around a lot) was that gyn oncologists were not interested in me.  If you are early stage, surgery is the treatment and once you've had surgery a surgeon has done his/her job and has nothing to offer you (in my opinion/experience).  After my surgery, I learned that there is a "gold standard" for surgery and staging, which, importantly, involves removing and analyzing so-called "sentinal" lymph nodes up the chain from the surgery site to look for cancer spread.  I did not have this as the gynecologist whose job that day was to do a tissue sampling terrified my poor husband into authorizing the hysterectomy because he could tell from visual inspection that I had cancer.  Anyway, I went for a second opinion to a renowed cancer center.  Of course, this is a teaching hospital and they want to teach.  The group advised me to be opened up again for the harvesting of sentinel nodes.  The consulting radiation oncologist dissuaded me saying it was unecessary based on my surgical report and my pathology report/slides.  So I had the radiation and went on with my life.  I was diagnosed with a recurrence in 2012.  I had another course of radiation and have had unheard of success with hormone therapy.  This was done when I lived outside the USA.  Back home, this is a therapy no one uses and, again, doctors seem to have no interest in me.  I am at another fine urban medical center now.  My doctor did order PET/CT scans and sent me for an endocrine evaluation to see what the high-dose progesterone is doing to me (it has shut down my adrenal gland).  But I am NED and get a bored reception each six-month visit.

You just never know.  While it is tremendous that you were found to be a Stage IA, Grade I, I would go for a second opinion.  If you are lucky, your insurance includes special caner coverage that will pay for a second opinion anywhere.  If so, I'd make the effort to go to a cancer center like MD Anderson in Texas, or Moffitt in Florida or Memorial Sloan Kettering in NY, or any cutting edge provider I could get to.  It's worth your peace of mind to know that you had the "gold standard" surgery/staging protocol and another set of eyes to read your pathology slides.  Good luck.  Oldbeauty

Double Whammy's picture
Double Whammy
Posts: 2827
Joined: Jun 2010

It's been almost 6 years since my diagnosis of Stage 1a, Grade 1 endometrial cancer.  I didn't get a second opinion.  I never ever felt like my gyn oncologist was too busy for me although I think he probably had much more important business to tend to than me (he is chair of the division and I get my care at a major academic medical center).  He took my follow up exams seriouisly and for the first 3 years I was seen every 4 months.  Then every 6 months.   I also had breast cancer and I really felt that I could discuss each cancer with the other doctor and I often did.  And they talked to each other.  Each knew what was going on with me all the time.  I thank the electronic medical record for this.  Even though they probably didn't read it until 2 minutes before entering the room, each always, always, always commented about what was going on with the "other end".    I know with this early stage low grade cancer that the chance of it returning was minimal but I was a good girl and went to every one of my appointments.  And for the first couple of years, I did worry because if it NEVER came back then there would be no reason for those appontments, and while I knew my prognosis was excellent, there was always that nagging concern before every appointment.  BUT toward the end I thought if I  had to endure another pelvic exam I'd scream.  Last spring I asked him if he thought he could kick me to the curb and he agreed that I did not need to see him anymore.  Hurray.  I was advised to get yearly pelvic exams and I'm probably not going to do that unless I have something that concerns me.  Then, of course, I will.

A second opinion is not going to prevent a recurrence.  You're either going to have one or you're not and if you're early stage, low grade, a recurrence CAN happen, but is unlikely.  Regular follow up exams are important, because these early stage diseases often recur locally (at the top of the vaginal cuff) and can often be successfully treated.  The thing is, if the horse is out of the barn, it's already out and was simply not obvious at surgery.  I had lymph nodes removed because of the depth of myometrial invasion I had (about 1/3 of the way through), but my nodes were clear. The surgeon said he probably didn't need to remove them, but he wanted to be sure.   It just felt good that he did it. 

I understand your worries.  Been there.  And it sometimes still comes up in far back of my old befuddled brain.  Unfortunately, only time can help and you've just started on this journey.  And, if you're not comfortable without a second opinion, by all means get one.  You are entitled and peace of mind and trust in your gynecologic oncologist is IMHO one of the most important aspects in getting well.

Just wanted to chime in as a Stage 1a, grade 1 survivor to provide some reassurance and hope to you.  I had my surgery July 1, 2010.  My gyn/onc said to me on my last visit approximately a year ago "If I didn't believe you're cured, I would not dismiss you".  I'm dismissed!!

Suzanne

 

Double Whammy's picture
Double Whammy
Posts: 2827
Joined: Jun 2010

I have never had a scan.  My initial pathology from my endo biopsy did not warrant one and my surgical staging did not show a need to go looking for trouble on a scan because surgically everything was confined - clear margins, no lymphovascular involvement, less than 50% myometrial invasion, clear nodes, blah, blah, blah.  I don't know what would have happened if I had asked for one - I simply felt safe without it. 

Be sure to get a copy of your pathology report at your next visit.  I kept copies of everything.

 

Tichondria's picture
Tichondria
Posts: 39
Joined: Mar 2016

I appreciate that you wonderful ladies take the time from your days to give me words filled with hope and just really know how to make me feel that i'm not being overly anxious or one of those annoying people who are never happy. I feel like I'm justified in wanting another opinion. I finally got my path report, and apparently according to their information, they sent it to two pathologists and each one agreed with the other. That the cancer was contained and all nodes showed clear and nothing showed up in ovaries or tubes.

I discovered that I got to keep my cervix. I just don't know though. This operation left me feeling a bit at odds. When I got my da vinci hysterectomy. The only area that hurt was my left side. And let me tell you, that spot looked horrible. It looked like I got burned or something from that area and that it was probably 2-3 inches long where as all the other incision holes were maybe a inch. Then everyone kept telling me that itching is normal due to healing. Yet I itched so darn bad, and then about 2 weeks after my surgery the skin around every incision was red as could be and the surrounding tissue was swollen, you could litereally see the difference. I went to the ER because I was worried.

Well the ER after blood tests felt that I was having an allergic reaction to the dermabond (spelling) that glue they use to put over your wounds.. however I tried telling them, that after 1 week that glue was not on my skin at all. Between showers and it just comming off on its own. I think I was lucky to have it stay on my skin for maybe 4-5 days?  I was told to get some cortizone cream and put it around (not on) the incisions and also to take benedryll. Because my blood tests did not reveal infection but hinted more towards allergic reaction.

But I have never seen someone continue to have allergic reaction 2 - 2 1/2 weeks post surgery. Where if i itch, it starts to swell back up and then my skin looks like it's bright red as though I have some kind of rash. Most of the 5 holes are healed up save for the far left one. That one still looks horrible, like I got a burn from hot water on my skin (not like fire burns) and the wound itself scabs over but just today it cracked and up welled what looked like greyish/yellowy puss. It doesn't feel hot to the touch, I'm not  running a fever, but I just can't shake this odd feeling.

I'm probalby just over thinking/worrying. But I wish I could describe this feeling. Most people think I'm being weird when I tell them this, but i try to explain it like this. I get these feelings like something is trying to tell me something... before I got diagnosed, out of the blue I kept getting this e-mails and things would pop up on my facebook about symptoms of cancer. I got this for 2 years off and on. And I know web sites have cookies that track what kinds of things you look up. But I never looked up cancer. I didn't google anything that had to do with it. Yet for 2 years these msg's would come to me off an on. I finally quit procrastinating about all the issues I had been having and when I went to see the gyno for pap.. that is when this HUGE ball decided to roll down the hill and yell "SURPRISE"  you have cancer. It just felt like something kept telling me to go get looked at.

I know this sounds rediculous and just overly weird, but this is how I ended up finding out. And right now, I just have this odd feeling like something is still not quite right. I can't put my finger on it, and I am not getting any odd msg's like I did earlier, I just feel like something is off.

Perhaps I should just step back and try not to think about this anymore, I'm not sure. I don't want to be a hypocondriac like my grandmother. But at the same time, I just want to feel assured that all is ok. Anyway, again ladies.. I always pray that more and more of you become NED and never have to see cancers ugly head rear up again. I hope for everyone to get better and I hope for now, that at least some peace and quiet and lots of love fill all of your days for awhile. HUGS and thank you for helping me feel better!

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1641
Joined: Jun 2015

I'm no expert... In fact, I only know this from reading here... Maybe you need to see a wound care doctor?  Eldri can tell you all about that!!!!

I would trust my gut in your situation. Don't settle for something. You need to be comfortable with the answers. What you are describing does sound like an alergic reaction, but to what at this late stage??? And, if puss is in that incision, that is an indication of some kind of infection... right?!!!!

I hope you find the answers that will put your mind at ease. Being worried is no way to live.

Love and Hugs,

Cindi

CheeseQueen57's picture
CheeseQueen57
Posts: 919
Joined: Feb 2016

That stuff is nasty. I had oozing wounds from a reaction to that stuff. My home healthcare nurse cleaned with alcohol and covered for a few days and they are healing. But I'm going to have some nasty scars. No bikinis for me. Ha!

Lou Ann M's picture
Lou Ann M
Posts: 996
Joined: Feb 2015

i am happy that you got a good path repor. That is something to cheer about.  I am sad that you are not healing right.  Just my opinion:.. I bet it's not a cancer problem, but a healing problem. I would try to get in to see my surgeon as soon as possible  a friend of a freind that a situation similar to yours after a di Vinci hysterictomy and ended up having to see a wound care doctor.  Hoping for the bes for you.  Your path report really does sound good.  Praying that you stay with NED for ever and that your incision heals.  Lou Ann

EZLiving66's picture
EZLiving66
Posts: 1403
Joined: Oct 2015

I don't think you're being weird at all!!  I found my cancer the same way - I just had a "feeling" that my first GP wouldn't take seriously and told me in her Romanian accent "You get old!"  Yeah, well, I found a GP who listened to me, sent me to a gynecologist who did an endometrial biopsy and guess what?  I was right; I had cancer.

Then I had the port installed and it just never seemed to be right.  My little dog kind of scratched me and his little toenail caught and puss just poured out of the port site.  I kept going back to the doctor because it just wouldn't heal even after they took it out.  I never ran a fever either but it was red around it and when I saw my GP she said that infection was just way to close to my heart to just let it go.  She called my oncologist who FINALLY recommended me to wound care.  By then, the skin around the wound was also infected from a reaction I had to the tape.  Wound care used a silicon bandage and after SIX weeks, with me packing the wound twice a day, they finally did a chemical cauterization of the wound which cleared it up.  I have an ugly scar but at least no more puss draining constantly from it.  Don't give up - keep after them!!  

Also, I am sooooo glad to hear the good news about your cancer!!!  If you have to have cancer, you got the best results you can get.

Love,

Eldri

cindy0519
Posts: 173
Joined: Nov 2015

I had an allergic reaction to the dermabond almost 5 weeks after my surgery.  I had patches of skin all around the 7 incisions on my abdomen and it took a bit longer for the incisions to heal due to this. I was told to apply Benadryl and Neosporin to the areas around my incisions until the dermabond came off and then Neosporine directly to the incision once the dermabond did come off.

I had exactly the same reaction when my port was placed and the radiology doc poo poo'd me saying I was allergic to it.  I didn't insist that he not use it and battled the itching and slow healing with it too.

I hope this help you too feel bit better.  If you have hot redness or puss you should see your doctor for sure.

I think we all feel overwhelmed and more than a bit off at various time during the course of all of this, please don't feel alone in this or odd.

Hoping it gets better for you!!

 

cindy0519
Posts: 173
Joined: Nov 2015

I had an allergic reaction to the dermabond almost 5 weeks after my surgery.  I had patches of skin all around the 7 incisions on my abdomen and it took a bit longer for the incisions to heal due to this. I was told to apply Benadryl and Neosporin to the areas around my incisions until the dermabond came off and then Neosporine directly to the incision once the dermabond did come off.

I had exactly the same reaction when my port was placed and the radiology doc poo poo'd me saying I was allergic to it.  I didn't insist that he not use it and battled the itching and slow healing with it too.

I hope this help you too feel bit better.  If you have hot redness or puss you should see your doctor for sure.

I think we all feel overwhelmed and more than a bit off at various time during the course of all of this, please don't feel alone in this or odd.

Hoping it gets better for you!!

 

Tichondria's picture
Tichondria
Posts: 39
Joined: Mar 2016

The far left wound refuses to want to heal I think. It's amazing but even 3 weeks after my da vinci surgery, the little wounds where they put the IV's into my hands still have not healed all the way either.  Today I had to go to the store and buy large bandages so that I could cover the far left wound from the Da vinci surgery. It weeps constantly, and no refuses to dry up. I'm an overweight woman (was working on weight loss before this diagnosis) and where the wound is, unless im laying down flat, it tends to get a lot of skin to skin so it sweats and remains a moist wound. (I would run my finger lightly over it and the middle of the wound has no feeling but the very outter edges are where it is sensitive.

 

So it weeps all day long so i had to get the bandage. I know covering it is not going to let it dry out, but I am getting tired of my clothes being ruined because of all the seepage. That and I was starting to worry about dirt and other things getting into the wound and getting an infection. Even with antihistamines, the itch around my belly is horrendous. And if I even itch around the wounds a little bit, I break out in HUGE welts and my skin turns bright red. What is worse is  that the itching has not moved down to my legs at or around my knees and around back. Showers don't help, and if I stay cold it's easier but I can't stay cold forever, because i shiver so badly that my teeth chatter.

Not to mention that for the past 2 weeks my left hand around the pinky and bottom portion of the palm have very limited sensation, and as of 2 days ago my right hand (the tips of my ring finger and pinky) are now starting to do the same thing. I just don't get it, I know if I ask my surgeon she will just say nothing she did caused it. (like my left eye after surgery seeing nothing but double vision and shadowy outlines. My eyesight has gone downhill so dramatically after my hysterectomy I just don't understand why. I never had any patches put on me, and I'm taking no drugs of any sorts other than ibuprofen to try and control my stomach pain. I'm just not quite sure what to do/think anymore.

I feel like the more I complain the more doctors look at me like I'm making this up or just all keep repeating the same thing. No infection just allergies. Well allergy meds are doing nothing for me. It's frustrating that all these weird issues are popping up on me. Sorry.. I just needed to vent. I'm really wishing I was just done with all this right now.

BabyCoach's picture
BabyCoach
Posts: 95
Joined: Mar 2016

im having the same problem with right eye. Since the surgery 2 days ago right eye has double vision???! Cant think how it could be related. 

Lets rest our eyes together!

Lou Ann M's picture
Lou Ann M
Posts: 996
Joined: Feb 2015

You sound so miserable, my heart goes out to you.

molimoli
Posts: 514
Joined: Aug 2014

Eye  problems and even blindness are known  side effects of that particular method of surgery. because for many hours you have been in the trendelenburg position (upside-down) throughout surgery, the structures of the eyes and brain were not made to have the weight of that much blood in their vessels for so long,therefore some people get minor damages and some get major catastrophies. especially heavier persons

I had a big fight prior to surgery with my surgeons.I refused the Da vinci , My argument being that  I never ever will allow my heart to be higher than my head at any time longer than a few minutes, too much blood pooling  , I visualize a stroke  and blindness both, with my luck.It happens more often than anyone will disclose because the technology and the machine cost millions of dollars ,no one will alert and frighten the public away from this new easy gadget.The fight was long but I ended it by asking for a written guarantee from surgeon and anaesthesiologist that no harm will come to my brain or eyes , that did it  they felt  a law suit coming or realize whose body it is  So 8 pm on the night before my 8am surgery booking, we settled on a total hysterectomy via vagina. I had no problems and was walking up to 10 kilometres  in 5 days, 

I think you will find related info if you google, trendelenburg position /side effects  or Da vinci surgery side effect on brain/ eyes.  I will google around and see what I can find, it must be there somewhere.

Your doctor must be made to document your complaint as it could be directly related,then giving you a copy of such documentation for your records. Do your due deligence, it's after the fact but not too late to know.

Moli --Not a Doctor or advisor just relaying my experience and gained knowledge as I did my due deligence prior to surgery. Nuff Love.

molimoli
Posts: 514
Joined: Aug 2014

Go to an opthalmologist and ask that  your eyes  be checked for recent damage notifying him that you were upside down for many hours. They can identify that particular damage from any other damage or degeneration as it will likely be blood vessel  related. 

Ask for a copy of his report directly to you. Keep it.

Do you think you should ask to see a wound care doctor before things get out of hand?

I hope things will turn around for you soon my darling, In the mean time we must keep our chins up , we are above ground  and that's a good thing despite all of this s..t.

Moli -Wishing next week will be the start of a good year for you. I am hugging.

BabyCoach's picture
BabyCoach
Posts: 95
Joined: Mar 2016

for alerting me to this finding. I will insist that the vision effects be documented. 

EZLiving66's picture
EZLiving66
Posts: 1403
Joined: Oct 2015

http://www.medscape.com/viewarticle/810490  Moli, you are right, girl!!!!

Love,

Eldri

molimoli
Posts: 514
Joined: Aug 2014

Thanks Eldri, but I couldn't log into the site you posted, don't know what I am doing as I am not computer savvy at all . I have admired the computer skills of some of you ,always helping us out with sites to find things. My general doctor told me that the FDA warnings appeared briefly years ago then disappeared but that some sites have limited info only, due to threat of law suite from the creators of the machines.They are restricted to post negatives unless affected patients consents to be outed to the public. Documented total blindness and strokes have happened.

We all must be always vigilant or we will be someone's  OOPS!!patient. I told my surgeon I didn't want to be hers.

She didn't find that statement funny, but that was ok 'cause I was not making a joke, I was dead serious.

Moli,Nuff Love.

molimoli
Posts: 514
Joined: Aug 2014

Please do insist on the file documentation,also make dated notes for your personal file and keep them notes as long as you have eyes. One never knows what tomorrow will bring .

Moli--Will always share info to keep us alert and safe. Plenty Love

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