First, I just want to express my gratitude for all the posts I read on having your omentum removed and how I probably won't miss it. It's the consensus I was hoping for. Whew!
So, June 19th of this year I was diagnosed with 2 primary cancers: Colon and Ovarian. I did 3 rounds of chemo for the OC and it was very successful. I am scheduled for surgery on October 11 for BOTH cancers and both teams have agreed to do it robotically but I've been told that could change during the surgery. Planned for removal are my ovaries, fallopian tubes, uterus, cervix, the entire omentum, part of my colon, and all kinds of lymp nodes from all kinds of places. There is the potential for the removal of other bits and pieces that I don’t even want to commit to paper. There is a chance I will come out with a colostomy and there is a chance it may be permanent although I've been told that is not as likely. It is likely I will come out catheterized potentially for a long time. After that I'm facing more chemo for the OC and then chemo for the CC. I have a long difficult road ahead of me that, if all goes well, can be the beginning of overcoming all of this or a long difficult road that ends in my death. They don’t know and probably won’t really know until they get in there. I’m so scared I’m numb. I would love to hear from anyone, including info on the the after-effects of so much lymph node removal and lower extremity lymphedema. Thank you to everyone, in advance!
Written by
CynD
To view profiles and participate in discussions please or .
Hi lovely and welcome to our lovely little family....
WOW!! What a tough journey you have ahead of you and two different cancers ask them if they know where it started post surgery the reason then you’ll have an idea and a better option for a treatment plan also ask for gene testing to see if you’re BRCA positive as that opens a whole new set of doors for treatment although if you can remain platinum sensitive and BRCA negative then some PARP inhibitors are available further down the line. I support someone with cancer and the most important thing I have found and she herself has found is eat what you fancy there are some people who go on to those ‘superfood’ diets and it works for them. When my special person was diagnosed she was told she would live 6 months with chemo as it had gone everywhere so far we’re counting 2 years 7 months she’s had 2 reoccurrences and it’s just recently become dormant again but before diagnosis she was the healthiest person around never ate anything she she shouldn’t have doesn’t smoke or drink and she still got it we’re very sure its hereditary as others in her family have had either breast or ovarian cancer but none of them are BRCA.
Do you have a good support network as that is key to have we know someone who has breast cancer and she does everything on her own it’s completely depressed her, my special person has offered to go to the hospital with her and she just refuses unfortunately she’s quite an inhibited person so there’s not much we can do there.....
Lovely picture - and I'm so sorry about your diagnosis and how much you have ahead of you, which you summarise in your post. One tip I'd maybe give is that the road twists and turns and you can never see quite how things will pan out, so don't overthink it, be in the phase you are in and deal with that, then tick the box, then move on. It's a tough journey for sure, and I wish you all the best for it. Fill your life with the things that give you pleasure when you are feeling well enough to enjoy them.
Thank you Harpist! I too am a musician! (keys, guitar & drums). You're right about not overthinking things - something I have a tendency toward. I hear a lot about filling my life with pleasure and finding my joy, and as long as it doesn't require funds I grab it - it, for the most part, being a cat named "Quincy"! Like I told CallmeMum, money worries abound! I hate that there is absolutely no breathing room in this regard. I would love to be able to have a treat now and then, or just go for a drive somewhere nice, ESPECIALLY if I'm feel well enough to really enjoy it, which right now I am. Ugh.
Look for the free treats - sometimes I'm surprised at what tiny things make me happy! Don't stop playing music - it helps enormously. All the best to you - it's not easy - I just see it as a new way of life to adapt to, and that helps.
Welcome to the club no one wants to join (yet with the most amazing members!). You've been dealt one helluva double whammy but you will invariably find women on here who've been through the same or similar journeys with their OC.
I'm presuming that one of your cancers was found incidentally because of investigations for the other. So possibly one or both are early stage? In which case for the OC that would be great (not great at all to have it but you know what I mean!). My own was early stage (1988!) and I never missed my omentum (never knew I had one in the first place!). Absolutely the only positive from my debulking is a flat stomach! But I certainly would not have chosen that route.
Wishing you a straightforward op (sounds like you are in great hands) and a speedy recovery. Sure you have a rocky road ahead but I think having surgery is a huge positive step forward phschologically (imo) and physically obviously, in getting rid of this insidious invader.
Thinking of you and again hope all goes well for the weeks ahead.
Hi Catherine! Gosh it's so wonderful to hear from people who so clearly get it. You are absolutely right about the discovery of one cancer as the result of the other. Originally I was diagnosed with what they termed “inoperable, uncurable colon cancer.” After removing 15 litres of fluid from my stomach (asidies) the pathology revealed I also had Stage 3 Ovarian cancer which changed the staging of the colon cancer to “undetermined.” I have had 3 rounds of chemo therapy for the ovarian cancer that was VERY successful and have made surgery both an option. I'm scheduled for both on October 11th. Thank you for your well wishes!
You do have a tough time ahead but you will amaze yourself of how you will cope. Try not to look to the but what ifs and always deal with tbe now. No one knows the future not even the professionals can predict accurately. You will also be amazed at how you will recover after the first few days sfter surgery. Keep posting and asking. You will get lovely suppirt here. Good luck xc
Hi Gleedy! You are absolutely right, no one knows the future not even the doctors treating me and, thankfully, they have even said that to me. I know that everyone is different and responds differently to different things. I guess part of me also feels like when it's your time it's your time, no matter what. I hope and pray my time still has some years left on the clock!
Hi Cyndie. You poor thing. You're far too young for all this. I was diagnosed with OC stage 3C in Nov 2011. I'm still here. I'm basically fit & well. You wouldn't know there was anything wrong with me. My surgeon initially gave me a list of all the bits he was going to remove. Can't remember them all now but among them were lymph nodes & appendix. He didn't remove those, nor several others from the list. He also warned me I may have a colostomy bag but I didn't. After the op, he told me I had to go back for another op in 3 months time. I was quite upset about that at the time and wondering if he had much idea of what he was doing. But the fact remains that after nearly 6 years, I'm still here. And I'm well. So I learnt to put my trust in the judgement & expertise of these people who train for a very long time to keep us well. I don't think they entirely know what they'll need to take out until they have a look around !
You sound as if you've got your head screwed on. No one would wish all that on you but I think you've got what it takes ! Good luck for Oct 11th - I'll be thinking of you.
Best wishes. Pauline. PS Don't consult Dr Google !
Pauline! Bless you for thinking I'm too young for this. I'm actually 57 and yes, damnit, that's still too young! That pic is 2 years old and I have to say I look much younger with hair, eyebrows and eyelashes! These days I look much like... an egg. Thank you so much for sharing your surgery experience. As I read each response to my post I am just amazed at what it is like to hear from people who have traveled this road and how different it is from my experience of trying to talk with well-meaning friends that haven't. "Don't worry," and "I'm sure it'll be fine," or "I know exactly how you feel" just don't cut it for me anymore and I am relieved to know that this place exists for me to come to! Since I've been a student for the past 6 years, and everything has been about research and more research, I have really had to fight to keep from visiting Dr. Google! I've gone a few times and for sure the more time I spend there, the more nihilistic my point of view! It's good advice to stay away and I will continue to try and follow it!
Hi Cyndie, sorry you find yourself here and facing such extensive surgery. I thought I was having a straightforward hysterectomy in May 16 but ended up in hospital for two weeks having had much more done than was anticipated. I had part of my bowel removed which was quite a shock and a bladder repair which resulted in catheterisation for 2 weeks. Luckily I had good support from friends and family as I was quite exhausted for some months following the op. If you feel up to it now prepare some meals for the freezer that you can just warm up and take all the help you can off people. Onc gave me a bit of time to recover from the surgery before I started on chemo which helped. I wish you all th the best with your surgery, just take one day at a time and don't think too far ahead. Keep strong and positive and you will get through it. Take care. Jo xx
Hi Jo! Great idea. I think I'll make my Lentil soup and stick it in the fridge. I read about the debulking surgery for OC and was stunned by how awful it can be! I realize they were giving every possible scenario which involves the removal of pretty much everything you can lose and still stay ticking, but still, it was daunting. I asked my Gyn-Onc surgeon and she didn't seem to think it would get into things like my bladder, spleen, galbaldder, part of the liver, etc. The part I hate is that inevitable qualification that always seems to follow, "... but we won't really know until we get in there." Did you have chemo before and after? I had 3 rounds before and will have to do another 3 after surgery. It really ravaged me and I'm not looking forward to more of it, but, like you said, "...one day at a time and don't think too far ahead. Keep strong and positive..." It's good advice from someone who knows. Thank you!
Hi Cyndie, no I didn't have any chemo before, I had 6 afterwards. In fact I was at work the morning before my surgery, thinking I was just going in for a hysterectomy but turned out more complex and was in theatre for 6 hours! I had an excellent surgeon though and was so grateful to be disease free afterwards which made it all worth it. The pain control was also excellent post surgery. I really hope your surgery isn't too extensive and you make a speedy recovery. Try to rest before your op so you are a strong as you can be on the day. xxx
Hello pretty lady, welcome to our gang, none of us want to be here but we are so glad we are. You’re one of us now and you’re more welcome than you know.
You’ve had a bloody bumpy ride so far and you’ve got quite a bit more to come but you are taking back some control by having the surgery and then the chemo. It’s not a barrel of laughs but you wouldn’t expect it to be but I’m sure you can do this, you have your young age on your side.
I had my hysterectomy with removal of the appendix and omentum (who knew we all have them?) and some lymph nodes, I’ve been very lucky to not experience any lymphoma. My tumour was 30cm in diameter and was adhered to my bowel and other areas in my pelvic area so a resection was very likely with a resulting colostomy, I had an amazing surgeon who saved my life and he managed to avoid the stoma, I still have some bowel issues but nothing I can’t deal with.
Good luck on the 11th, they will do the very best for you that they can and like Pauline says leave the medical advice to the professionals and avoid Dr Google.
Please let us know how you are, we’re an inquisitive lot so need to know how you’re doing. Sending big hugs and love ❤️Xx Jane
Hi Jane! Yes, I've experienced the chaos Dr. Google can throw into my world with just a few clicks of a button! But I got to this site looking up stuff about the oventum, so sometimes it's a good thing . Like the rest of you I didn't really know the oventum existed or that it had a name and I'm greatly relieved to hear that everyone is doing just fine without theirs! Unfortunately (or not) I also read a research study from this year that said that the medical profession is starting to realize that the oventum does indeed play an important role in several aspect of gut function, the immune system and metabolism. In other words, it's there for a reason. But I'm weighing that against a site full of women who have been without theirs and without issue. Sometimes I find myself feeling pretty hopeful about things and then I remember, "oh yeah, I forgot about that OTHER cancer." When that happens I swing from the happy place on the rollercoaster to the scariest part of the ride. Cancer is hard. I'm glad to be a part of your gang. Btw, I'm actually 57. I look much younger with hair on my body!
Hi CynD--What they ALL said! And I am so sorry you have to go through this but your post sounds strong and you will see--you will deal with all of it, a plan will be put into place with treatment and you will be on your road to treatment/recovery post surgery. What I find--and read on these posts--is whatever happens--whatever they need to do to help you, you will deal with just fine. Things can sound worse than they are and having the attitude you seem to have will help tremendously. Keep us posted and let us be here for your complaining, your successes, your worries, and as your friends. Wishing you luck and much more!
Hi Maxjor! Yes! Things OFTEN sound worse then they are. And I'm surprised at how far I've come in terms of adjusting after about 4 months on the fear train. You start to get used to an overload of ever-changing information and begin to realize that part of the job of medical professionals is to give you the worst case scenario on everything. You know... just in case. I'm trying to keep my Zen on. Some days are harder than others. Worries about money and how I'm going to pay the rent and bills is my roadblock to really being able to fully relax into things. It's good to know I have a place to come with whatever I'm feeling and however I'm feeling it. I have TERRIBLE neuropathy in my hands and feet from the chemo and typing has been almost impossible for me since I started, but my last round was August 15 and today my fingers are flying!! It's a good thing. It's a REALLY good thing.
Hi there! I love your positivity in facing this undoubtedly scary surgery and future chemo, etc, to come. It makes a huge difference.
I didn't know what an Omentum was at all when my Doc told me tumors were found in it. One thing you will get with these cancers is an education.!
Surgery will answer a lot of questions and help your doc put together a treatment plan. Treat yourself kindly and well. Healing takes time. We're here for you at whatever time of day or night you need us. This is an amazing group of ladies and hubbies and carers who have faced huge challenges but are committed to sharing their knowledge. Just remember, this disease is different in everyone. Someone else's path won't be yours. Take one step at a time and continue to live your life. And yes, eat chocolate!
Hi Mommoo! I've spent the past 6 years in school and it's really helped me to understand the overwhelming amount of information that has been dumped on me over the past 4 months. Also, since my degree is in social work, I know how to be a strong advocate for myself. It's harder though when you're doing it for yourself because you kind of have to detach from the role of patient and move into the role of caretaker. Every now and then I will be in one mode and part of me fades back to the other and I start to feel real confused, sometimes frightened, sometimes angry, much of the time exhausted to the extreme. I can already tell this is an amazing group of people. In terms of chocolate, if money weren't such an issue, I'd be loading up on... in my case... PIE! I despise the fact that joy costs money! There seems to be some financial tie out to even the simplest pleasures. Thanks for writing!
Don't have any advice on post op because my surgery isn't until Tomorrow but am sending lots of love and hugs your way along with prayers that the doctors can get it all out and you do well. Easier said than done but try and stay positive. I know how you feel on the scared part. That's why I joined this group because I can't let my kids and my mom see my fear. On here I can talk with others who have already been down the road I am traveling and can gather more strength and have people who will listen to my fear without judgement.
Hi Jess! I'm responding to you first because your surgery is tomorrow and I want you to know that my thoughts are with you. I am blown away that you would take time out of your life, the night before your surgery, to reach out to me. I am without words. The response from this community has been amazing. I started to notice the spelling of certain words and then I read where someone said they were sending love from across the water in the U.S. So I realized (with an "s"?) that this site is in the UK, yes? Not that it matters, and obviously there are people here from the U.S. including me now. Anyway, how about you? Where are you? When I read that you don't want your kids and Mom to see your fear my first thought was how hard it must be to try and keep that up as you face down the Big C. My second thought was how I wish I had a Mom and kids to try not to be afraid around! Listen, you keep good thoughts until the minute they put you under and then I promise I'll take over for you from there. And the minute you wake up you think to yourself, "there is this girl named Cyndie in Austin Texas that wants me to remember I am loved!"
Just what everyone else says we'll all be routing for you on the 11th, it'll surprise you just how much fight you've got when it comes to it. Hugs & prayers.
As you can read, so many of us have been there and done that, and are doing good. Sounds like you have a real good handle on what you will be facing and that is oh so important. Of course the dr's have to give you all the " worst case sceneros" to cover their bottoms, but even then like many have stated, It just depends on what is seen once they get in. Walking and drinking lots of water sure helped in my recovery before and after surgery. The worst of all of it for me was the stent, but that too was much better once it was taken out about 3 months later. please know we will be thinking of you between now and the 11th with many well wishes being said on the 11th. As you can please keep us posted, because YES we will be wanting to know you are doing ok and that we can give you support any way we can. Here in the states it often takes 2 weeks or more to get the results back (even the good news or not so great news), so if you have your head around that you can pace yourself and other family members so that they are not bombarding you with those questions. Wishing you a speedy recovery.
Good to meet another MSW...but sorry you haven't so far had much time to use it(!)
I am in UK but my kids are American and I have had some really good experience of American social workers...am glad you are posting and am sure you will have years ahead to help others. You've had such a rough time that you now really should have things going well for you.
Thank you for that Chris! You're right, I haven't actually been able to work in my field, at least not officially. I got sick right as I finished school so even though I'd gotten a head start on sitting for licensure, it never happened. So I'm an MSW, but not an LMSW. I started college for the first time at 50 years old - a time when most women are thinking about retiring! Because I had lived so much life before school, I knew what I wanted to do, how I wanted to realize my degree, and the populations I wanted to work with. In my internship I worked as a counselor specializing in trauma and PTSD, individuals and couples. I loved it so much! I was even offered FREE supervision by that internship so I could immediately start accumulating hours toward my LCSW which is where I ultimately want to land. Seems like a distant dream now. Part of me feels like 6 years of focus and education in social work got wiped out by 4 months of cancer and chemo. It would be a personal and professional honor to be able to share this experience with others who are dealing with cancer, and help them navigate the maze of information and emotion that comes along with it! I hope God, the universe, and the powers that be, consider me worthy!
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Help/Advice please on choice of treatment
Has Anyone out there got 2 unrelated cancers at the same time, or heard of anyone else having this problem
BRCA Testing
Complete Hysterectomy and debulking
