Diagnosis

djapj

I went to my NP on June 25th because I thought I was pregnant.  Two days later I was told I had a large mass, “likely Ovarian in origin.” A week later the MRI showed “an area of concern.”  My CA125 was in the normal range, my bloodwork normal.  On August 22nd, I had a complete hysterectomy along with the removal of an 8 ½ pound tumour.  Three and half agononizing weeks later I was told that there was cancer in the right ovary but that it was “well differentiated” and they were comfortable that they got it all out.  Pathology testing of everything that they removed, including lymph nodes, came back negative.  Only the right ovary - which was graded as Stage 1A.  I have a few questions that I am having problems with:
 - Is there a possibility of recurrence when they removed everything (sorry, I’m a newbie.  Just can’t wrap my head around it all)
 - Has anyone had problems with bowel pain after surgery?  I’ve had to go back to the hospital and the doctor said it was likely “bowel adhesions.”  How do I differentiate the adhesion pain from the symptoms that I read on here that could be more serious?
 - I’ve read a lot of the posts on this amazing Forum.  You are all so very brave.  I have a very hard time even talking about the cancer with stories of such bravery of what some have had to indure.  Has anyone else had problems feeling like there situation wasn’t important because it was caught in lower stages?  

Flowergirl

Welcome @djapj- glad you were able to get the surgery and some physical relief! 
Do they have a followup-plan for you? If you use the search bar at the top right, someone in a previous post mentioned about adhesions.
Thank you for sharing your story and joining the chat site. There are lots of good topics and information sharing from this great community - welcome, we are here to support each other!

jan0927

Hello @djapj. I really identify with your situation, our details and concerns are very similar. (Although pregnancy was definitely not a possibility at my age!) I’ve had pain attributed to adhesions as well, has levelled off, and while never completely gone it’s very tolerable. Do report it at your follow up though, so a real cause for concern can be eliminated. (I had a colonoscopy, and there was a plan to do a CT if it got worse.) I was Stage 1A with a very large tumour as well, (14 months ago) and although I doubt if a doctor would tell us that there isn’t a “possibility” of recurrence, you’ll feel more secure in your return to “normal” as time goes by. 
I completely understand your last sentiment. I feel I’ve been so much more fortunate than most of these wonderful ladies. How can I complain, I didn’t even have to go through chemo? Sometimes I see this site described as “for women living with ovarian cancer” but I’m sure that doesn’t mean to exclude those of us who are optimistic it’s behind us, but remain deeply affected by the journey.  

djapj

Thank you, @Flowergirl for the info on the search possibility of adhesions.  That should prove helpful. Much appreciated.
@jan0927 - it is so nice to hear someone else has had a similar journey as me.  But that is what this forum is all about, right?  :-). I have a few questions so will PM you.  Thank you!

Ingrid_Canon

@djapj Hi there I am also an early diagnosis and NED for more than 18 months, no chemo.  Regarding belly issues, I can appreciate as I have been dealing with issues since my hysterectomy.  Remarkably the area of discomfort is where they found the cancer.  Recent ultrasounds don't indicate any issues other than a small amount of fluid in my pelvis.  I also suffer from IBS so I can appreciate how difficult it is to determine 'net new' issues from existing.  Rest assured that provided you follow up on any concerns, that it may be residual recuperation.  Our bodies have gone through a lot and we all heal at different stages.  Wishing you all the best.  You are a survivor, just like the rest of us early stages.  Luck was on our side, but we can't minimize the challenges we have overcome now and in the future.

djapj

Thank you @Ingrid_Canon. Very kind words. 
Can you explain what NED means? So much to learn. Lol. 
I have an ultrasound scheduled for Monday so I am “happy” to see if there is any serious problems or if it’s likely the adhesions. Has the medical community given you any insight as to how to keep the adhesions at bay or help them? How often do they rear their ugly head for you? And have you found they’ve gotten better with time?
One of the most common pieces of advice that I’ve gotten is give it time. With so many people with experience, that is likely the piece I have to get better at following. 😉

Flowergirl

Hi @djapj - oh, the dancing with NED - (No Evidence of Disease) is what they usually refer to it as.
And the most important thing we need to remember is to dance regardless!
Wishing you the best for the upcoming appointment and dealing with the adhesions - thanks @Ingrid_Canon and @jan0927 for sharing and support.
Hope you are all feeling ok today and look forward to connecting with you all on Tuesday!

Ingrid_Canon

@djapj @Flowergirl beat me to it on the NED ... that is what I meant. I actually haven't had any confirmation that I am dealing with adhesions.  I have a vertical scar and have developed hypertrophic scarring.  The plastic surgeon suggested that I massage the area twice a day for 5-10 minutes and use silicone scar tape.  Although my scar still looks awful, I did notice that the scar is less knotty, hard and burning.  When I asked if it is possible that I had internal scarring as well  I couldn't get a straightforward answer.  Not sure if I  understand properly but I thought you could not see adhesions in a ultrasound.  With that said, I understand that woman who have had endometriosis deal with a lot of scarring and adhesions.  Not sure if there is a non-surgical solution though.
Patience is certainly a virtue, of which I have very little.  For me recuperating after the first surgery was just about done before my second and quickly followed by a third.  So I have to remember to count from my last surgery (Mar 2018) rather than the first  (April 2017).  There was definitely a certain amount of residual ascites after each surgery, which is getting better over time.  Never knew that fluid in your belly could cause so much discomfort.
Where we do need time to heal for sure, don't hesitate to follow up with your doctor on any concerns.

jan0927

That’s my understanding too @Ingrid_Canon that the only way to definitively diagnose adhesions is to see them during surgery to release them, if they become severe enough to warrant that. So it’s a bit of an educated guess, by eliminating other reasons for the symptoms. 

djapj

That’s what I’ve been told too. The last time I was in the hospital, the doctor verbally told me it was likely from adhesions (this was the first time I’d even heard of them). But I’m his medical report to my NP, he called it gas pain. That took a bit to wrap my head around. 

Shelley417

Hi!  I too was told I had a "mass" and thought it was a fibroid and after the surgery was diagnosed with a large ovarian tumor.  Mine was over 10cm in diameter and a stage 1a.  Additionally I didn't need any chemo or radiation and feel like I am waiting for the other shoe to drop, so to speak, since I didn't get an "official" surgical staging by an oncologist.  Every little pain and twinge I get I think 'is that a recurrence?  Should I call my oncologist?'  Ugh!  I have always struggled with adhesions too since my first ovary was removed 10 years ago now (due to adhesions and stuff causing excruciating pain).  So I can totally relate.  Some days I don't feel like a survivor but other days I really worry.....a lot. 

djapj

Hello @Shelley417. 
I feel your pain. My tumour was 24 cm. 
Question - how did you know that your tumour was stage 1A if it wasn’t officially tested? 
Also, can you tell me more about the adhesions pain? Does it have any rhyme or reason? So often, effected by certain foods? Do you end up in hospital or have you figured out a way to deal with the flare up? How long does it last?
I’m very grateful for the information. It’s very nice to be able to ask people that are similar. 

Shelley417

djapj!  They officially tested the tumor after it was removed and staged it, but they did not do a surgical staging operation when it was removed.  For example, they did not remove lymph nodes for testing or go through my total abdominal cavity looking for lesions.  When they know they are dealing with a potential cancer, usually a gynecologic oncologist does the surgery and they do a specific type of surgical procedure.  Mine was done just by my gynecologist because they thought they were only dealing with a large fibroid.  He was surprised when he opened me up!  He called an oncologist during my procedure to get some advice, but he didnt do the entire correct procedure.  The only thing my gynecologist DID do was the peritoneal wash that came back negative.   When I was suffering more from my adhesions they bothered me the most when I had a lot of gas in my bowels or my bladder was full.  It was SO painful at times I couldn't even walk.  It would come in waves and I recall once at work I was thinking I might have to pee in my garbage can to alleviate the pain if I wasn't able to walk to the bathroom.  Good thing the wave subsided and I was able to quickly walk to the bathroom.  Once my bowel or bladder was emptied, the pain subsided.  I just noticed the pain was worse when my bowels bothered me since the adhesions were there.  I used to have one adhesion around my belly button that would pull something awful when I had a bowel pain.  I had a surgery and it was released.  I had my hysterectomy 7 months ago now so I am waiting to develop new ones.  I already have some from my ovary removal 10 years on the right side.  I know its likely adhesions because I don't have anything else there besides my appendix and I go through a checklist in my head about appendix pain to make sure that's not what it is.  Any pain on the left side is likely just adhesions.  Its good to know anatomy and your own body issues to know the difference.  Takes time to understand it all! 

djapj

Thank you for the information, @Shelley417. I am very new here and I find every single time someone responds i learn the following:
1) we’re  all pretty amazing 
2) our stories are so amazing. 
3) we help someone else learn something new all the time. 

I had my surgery done by a gyn oncologist. They opened me up because of the massive size of the tumour and pre tested it in the operating room. He decided to take everything from me because he was pretty sure it was cancerous. Thank heavens he did, I wouldn’t want to go through the healing again. It’s such a long process. They took multiple biopsies from me. I feel incredibly lucky. Only stage 1A in my right ovary. Well differentiated. 
Thank you for the info on the adhesions. I was so shocked when they flared up that I went to the hospital. They pumped me full of morphine and were trying to decide it they were going to tube me to release the pressure (like they did with the bowel obstruction) and the pain started to subside. Would love some info from anyone about how they help with the adhesion pain. Also, how long did it take you to stop being so worried it was going to happen again? How do you relax and stop all the cancer thoughts?

Shelley417

djapj

I am relatively new to the forum as well, so I am learning new stuff everytime I read some posts! 

When I finally met with my gyn onc she asked if I wanted to be opened up again to go through with a staging procedure and I opted not to.  She felt since my tumor was well differentiated and my peritoneal wash was negative as well as my chest CT scan and the stage 1a and it was a low grade (epidermoid type) it wasn't necessary.  Also, they didn't manage my pain very well with the surgery and I did NOT want to go through it again with an even larger incision than I have already (its a huge vertical scar).  So I am hoping for the best.  She did say that even if I have a recurrence its 95% curable.  So......but still....my mind goes to the bad places sometimes.

I opted to deal with the adhesion pain with pain meds when it was at its worst.  I had hydrocodone.  I don't have it too severely now, but I can basically tell when its adhesions and when its 'different".  I have been having ulcer like pains lately that I am seeing my GP about.  Mind you, I have had a lot of family life stress going on so an ulcer wouldn't surprise me one bit LOL  As far as relaxation.....still working that one out!!  I am open to suggestions too!!

Ingrid_Canon

@djapj When I was doing some research I came across an article about adhesions.  Since my ultrasound and CT SCAN have found nothing of concern, my issue must be related to adhesions.  I tried using a hot compress in the affected area and it did seem to help my symptoms somewhat.  The section I read with interest stated:
"Very hot baths and a heating pad applied directly to the lower abdomen help relieve pain and bring disease-fighting blood to your pelvis. You can soak a cotton cloth in castor oil, place it on the abdomen, cover it with plastic wrap, and then put a heating pad or hot water bottle on top to bring a maximum amount of heat to the pelvic area. Ginger root compresses and taro root poultices may relieve pain, keep the area loose and freer from adhesions, and dissolve already formed adhesions".
I haven't tried the castor oil or compresses yet, but sounds promising. Hope this helps and that you are doing well.

djapj

Thank you, @Ingrid_Canon.  I'm so thankful that you posted that.  I had previously gotten the castor oil presses advise from a pelvic physio.  I hadn't done it yet, but with your post, I decided to give it a try. I have tried it 3 times now.  I have noticed a small change in the hardness of the incision.  The bonus as well as it makes me stop, sit still and do nothing for 30 minutes.    I have started to massage it a little deeper every time.  Its not my favourite thing to do, but I'll try almost anything to keep the adhesions at bay.
I hope you are doing well.  

djapj

@Shelley417, thank you for that information.  I find getting everyone else's stories, is helpful for us to digest our own story. 
I am having good luck with self-care.  I leave the office (I own my own business) about midday.  I am lucky enough to have an amazing team.  I do things for myself until the kids get home (bake, read, research, sometimes work from home).  And then I start to wind down about two hours before bedtime.  And do minor things for myself.  I am finding that its a lot of little things that are helping me heal mentally.  I am definitely not there yet, either physically, mentally or emotionally, but any positive day is one I am grateful.  

Ingrid_Canon

@djapj @Shelley417 Ladies I do know what you are going through with the doubt and worry.  Although being staged early is a blessing, it can also be very difficult.  I read somewhere that Stage 1a individual stated that they didn't feel  like a cancer survivor because all that happened for them was surgery.  I felt this way as well and believe it or not had a lot of guilt.  I am now 18 months out from my original diagnosis.  Did I think about reocurrence?  Absolutely, but I had to learn to push those thoughts away as it was affecting my quality of life and healing process.  I do believe that I have become more attuned to what my body tells me, but our minds are very powerful tools and I have come to realize that your mind can play tricks on you if you let it.  
The way I look at it now is that I am grateful to be Stage 1a of this 'silent' disease and although I did not have to go through chemo/radio, we are still survivors.
Each woman is different.  Some like to keep tabs of every health issue. I tried that and bring them up with my doctor, but I have to trust them when they say there is nothing of concern. It is exhausting to always be thinking about my health and being in hospitals.  I've adopted the following to assist:
"Healthy is not thinking about your health every day and I've got a chronic illness that may or may not flare up" (like IBS as an example ~ annoying, but manageable).

Shelley417

Ingrid_Canon  Thank you for your reply.  I like what you said about being healthy.  It makes sense.  Yes, we do have a chronic illness but it does not mean its going to flare up now or in the future.  I guess I have to stop being a hypochondriac so much and just enjoy being healthy (well, as healthy as I can be...hopefully more now with many of my other issues under control).  Its just scary knowing too much.  I'm a medical librarian by profession so I research a little too much sometimes...LOL  Thanks again!! 

djapj

@Shelley417 @Ingrid_Canon - I am so grateful for all the insight, both for now and what it will feel like potentially in the future.  That is what this group is all about.  Help with what we are going through.  Today is a good day.  Tomorrow might not be.  But that doesn't mean we have to make it a bad day.  Thank you for the reminder.

Shelley417

djapj  Its great you have time to spend for yourself.  I am struggling a lot with depression lately.  I am actually trying some additional medications to help.  My husband is currently unemployed and having a hard time finding work.  Plus he is bipolar and having issues so I am just trying to keep him together, let alone my own stuff together.  So like normal I put my things aside to help him so I am struggling.  Could be contributing to my insomnia and lack of concentration.  Sometimes I just want to drop everything and just walk out, you know?  Go somewhere quiet where I can just take care of myself.  I think that is why I actually enjoy the house at 2am when he is asleep and its just me and my poodle in the dark and quiet. 

Ingrid_Canon

@Shelley417 Based on your above comment you are actually in 2 roles;  caregiver and cancer survivor.  For me that means that you have to take time for yourself.  I realize you are in a difficult situation with your husband being out of work.  My husband was out if work for 18 months, but we got through it.  Things do have a way of working out.  For my husband he struggled with me being the bread-winner and just wanted to know he is useful and needed.  Perhaps it would help if he could do some tasks for you that would help him feel like he has purpose.  You still have a lot of healing to do and need to take that time for yourself.  Do you have any hobbies that you can turn to that gives you some personal time?  I like to bake and garden where I get my emotional healing.  
Please try to take care of yourself first.  I know your inclination is to help your husband first, but if you aren't doing well and he's not doing well then it makes things so much more difficult.  Rely on each other, but you need to heal as well.

djapj

Hello @Shelley417 , I agree with @Ingrid_Canon - you have to take care of yourself.  I have struggled with this situation myself.  I have three companies and two children at home that need my attention.  Not as difficult as your situation, but the same topic of taking care of yourself.  I have found the easiest is the small things.  Take a soak in the bath, take a walk outside, talk to a friend, go out to dinner with someone that lets you talk, read a book that will allow you to stop thinking for a few minutes, etc.  I've had decent luck in many small things than one day off (that never happens), or some other big item.  We are here to support.  

Shelley417

Ingrid_Canon yes, I am pretty much my husband's caretaker.  I feel that way every time he has some sort of a meltdown and those have been more frequent lately.  I almost feel that I am not allowed to have one myself because I have always been the strong one in the relationship.  Now that I need support, I really don't have any.  Its difficult to set aside time for myself and I really think that is why I spend so many nights up alone by myself at 2am in the dark with my poodle.  I almost look forward to those times even though it means I don't get any sleep.  It sounds weird but those are my quiet "me" times.  I am having dinner with a friend this week and taking a day off work to spend with my mom.  Hope its not too stressful of a time with her.  I just find it hard to take time for myself, that's all.  Its a learned thing I think....LOL

MarilynOCC

Hi @Shelley417.  You have a lot to deal with !  I hope dinner with your friend was good self care time and that you were able to share with them a little bit of what you are going through.  Talking about things with someone is often helpful and sometimes we need some outside help too.  Have you considered seeing a social worker or psychologist at the treatment centre?  They may have some tips about other resources that may help care for your husband to give you a break.  Or maybe some kind help at home for you would ease the load a little bit. You might also want to talk to  you oncologist or nurse and your family doctor about your situation and see what they might suggest. It is easy to become overwhelmed with all that is going on for you and reaching out may be the first place to start.  I am so glad that you found this site and can share here some of what you are going through.

If there is a time when are feeling particularly stressed and unable to cope, here is 24 hour number you could call to talk. 403.266.HELP (4357)

Shelley417

Thanks @Marilyn! I appreciate your thoughts!  I am considering seeing a counselor through work, actually.  I just have to call and arrange it.  Making the time to do that is what has been tough lately.  My friend ended up cancelling dinner on me because he was sick, but we will go out soon.  He promised!  Its funny because I have worked with cancer patients in the past where I made all these suggestions but when it comes to taking the suggestions for myself I just cant do it!  I think I'm too stubborn to accept help sometimes too.  Its a learned response I think.....anyway, again, I appreciate your wisdom!!

 

djapj

@Shelley417 - I understand how you feel about always needing to be strong. I’ve struggled with this. People want you to be better, and sometimes you just “give” them what they want. Even though it costs us personally. Big hugs to you.