Hi ladies, I am new here I was diagnosed with Stage 4 Ovarian Cancer in March 2020 following months of abdominal pain and then fluid on the lungs. On examination, they also found I have a clot in the peripheral artery in my shoulder. I have received 9 chemotherapy sessions and was offered debulking surgery. I met with the surgeon who told me I was borderline for surgery as there was a higher risk of complications but they were prepared to carry out the operation if I agreed. It was a very hard decision to make as I was nursing my husband, who had terminal cancer. I decided not to have it as I couldn't leave my husband and if I didn't survive the operation he wouldn't be able to cope. Sadly my husband passed away last week and I have been thinking about whether or not to go ahead with the surgery if it is still possible. Still unsure what to do. I am 68 and have had a good life but would like to have a few more years yet. What are your thoughts?
Debulking Surgery: Hi ladies, I am new here I was... - My Ovacome
Debulking Surgery
I am so sorry for your loss and sending you hugs. I would go ahead with the surgery the post op period is not as bad as you would expect and the chance is it will be successful and give you lots of years to come . Let us know your decision and you will get lots of support from this brilliant ovacome chat room. Xx
So very sorry for your loss and how selfless you have been to care for your husband which demonstrates your love for him.It must be very hard for you at the moment having to deal with all these issues .I think you have to weigh up the pros and cons of going through with the surgery and obviously it is your decision to make .If it helps at all I think I would take a chance on the surgery .Thinking of you at this difficult time. Chris
Tisha, it breaks my heart to hear of the loss of your husband whilst facing ovarian cancer yourself. I am 69 and was diagnosed with OC stage 3 in the spring. My debulking surgery lasted six hours, I have lots of titanium clips in me holding things inside in place, which is par for the course. I spent five nights in hospital, although my surgeon had said it is common to stay three nights in hospital. I was injected with large amounts of local anesthetic before the surgery that wore off after, I believe, 48 or 72 hours. Anyway, on the sixth day, I was released. I was in pain and such low spirits after my surgery that it took some convincing for me to agree to have a port installed for my chemo. I finally relented and had the procedure. I had my first chemo which went well, but I ultimately I changed oncologist and hospital system and am pleased with my new doctor and his staff. I had chemos two through four at the new hospital which has a beautiful infusion area that is cheerful. My first three chemos went well. My daughter ordered frozen booties for me to wear during chemo to try and stave off neuropathy in my feet. I think they helped, but during chemo 4, I had to remove them because I suddenly could no longer tolerate the cold. Anyway, my pinkie toes have since become kinda numb and weird feeling, but not painful. For chemo 4, my neutrophils had dropped and I was started on Udenyca (Neulasta) to get my bone marrow to perform properly. It seems to be working. It does cause knee and back pain which I have been able to manage with daily Claritin and pain medication. I have been fortunate, knock wood, in that I have not suffered from nausea. Nor have I vomited. I have maintained my weight at 165 ( doc said not to attempt weight loss until I finish treatment). I have chemo 6 of 6 on next week, if all goes to plan. Then I will be put on a parp inhibitor which I will take daily. I must say that after surgery, I cried a lot.I found myself thinking, why oh why did I have the surgery?!? It seemed like a mistake. But little by little, I got better. It was two months until I could drive my car again, which improved my outlook. I am now glad that I had the debulking surgery. Which has been the most difficult part. I do struggle with constipation, and take stool softeners daily and often laxatives. My point is, I still enjoy life. There are a few days right after chemo and my Udenyca shot that I feel rather lousy, but these days pass and then I’m in the kitchen humming and making crawfish étouffée for dinner. You will chose your best way forward, but I am glad I had the surgery and did the chemo. My CA 125 has fallen from 177 to 12 after four chemo infusions (chemo is one day every three weeks). I have read so many posts on OVACOME which have proven very helpful to me. Whatever you decide, stick with these kind ladies and remain hopeful, if there are any specific questions you might have, I will do my best to respond.
Best wishes from Louisiana,
Sashay
I really appreciate you taking the time to respond and to explain your journey.
Hello Tisha,
My thought, along with talking to family, friends and this forum, is to ring the Ovacome Support team on freephone 0800 008 7054. They have many years of experience plus their [listening] skills; many here find hearing themselves talking over options to them helps clarify their choices. You will be in very safe and experienced hands to help you make your decision.
Whatever decison you make, all of here will be beaming our warmest wishes to 'cradle' you at this very sad andalso important time. L x
*Edited by moderators and text replaced with that in square brackets*
Thank you for your advice I have only just found ovacome and didn't realise they gave advice and counselling.
Hello tisha10
Thank you for your post. I'm very sorry for your loss. I can see that our forum members have kindly shared their experiences and thoughts with you.
As lesleysage says, we have a Support Line and you can call us on 07503 682 311 or 0800 008 7054 for information or if it would help to talk anything through. We don't offer medical advice or a counselling service, but we're here to support anyone affected by ovarian cancer, so please do get in touch if there's anything that we can help with.
Best wishes
Julia (Ovacome Support Services Officer)
Hello Tisha... what a terrible time you have had! Now trying to decide about this surgery when the loss of your husband is so raw...
clinically speaking, I think most oncologists would say that having the surgery gives any subsequent chemo the best chance of working... so for your long term prognosis it’s kind of a no brainer but I would think carefully about the timing and support for your recovery. Take advice, have a serious think, listen to what your gut is telling you. Best of luck.... you certainly deserve some! xx
So selfless of you and I do hope your husband passed away peacefully.
I would firstly find out if your medical team are still prepared to do the operation. If they are, ask what kind of complications they are concerned about. You could also ask for a second opinion. You can then make a more informed decision.
Your team would have discussed your case in a multi-disciplinary team meeting and must have felt the benefits If surgery outweigh the risks. Sixty-eight is no age these days and I’m not surprised you’d like a few more.
Let us know what your team say.
All the best!
Hi Tisha, I'm so sorry for your loss and the difficult time you've had. I was also diagnosed stage 4 with primary peritoneal cancer ( treated as ovarian cancer) this year in February . I had 3 cycles of chemo then the debulking operation the end of July, it is a big operation and the first 2- 3 weeks afterwards I did find difficult, but each day was an improvement and 3 months down the line it's a distant memory.
I was warned there maybe complications , they should explain these complications to you and how it will affect you .
I was lucky and had a good result with no complications.
I was scared to have it but decided that:
1. They wouldn't operate if they didn't feel I'd benefit from it ( why would they waste time and money on it?)
2. They wouldn't operate if they thought I wasn't strong enough to go through it.
You need to make an informed choice, so ask your Consultant and Surgeon anything and everything that concerns you. I wish you all the love and hope that it all goes well for you. If you need to personal message me then please do, anytime .
Sending hugs
Jan xx
Thanks you so much for your comments
You still have a lot of living to do. I would have further discussions with my oncologist. I was stage 4 oc peritoneum and omentum had 3 bouts of chemo then surgery another 3 bouts of chemo I am on trials ICON 8B which means apart from chemo and taxol I am on avastin which I have 13 bouts of after surgery treatment due to finish 28th Dec. It has not always been easy with joint pain but looking forward to next year when treatment will be finished. There are so many different treatments out there. I am sorry for your loss but you have so much to live for. Virtual hugs sent to you
You have been brave and selfless in putting your husband’s needs before yours. Now you should give yourself the best chance to have some time to come to terms with your diagnosis and make decisions that best suit you. Remember you are grieving both for the loss of your husband but also for the future you had planned together. Only you can decide what the most important things are that you want to be able to do. Discuss your thoughts with your family or Ovacome support. Your oncologist and CNS can help you too. Wishing the very best outcome for the path you choose. Sending you love and hugs at this difficult time.
Cheryl. X
Thank you for your comments
So sorry to hear about you Husband, my thoughts are with you.
That’s a hard one to answer !!
I was to have de-bulking surgery but that changed during chemo because they found Lymph nodes in my chest were effected, so they didn’t want to do it
In lots of ways I’m glad now but was very upset at the time, onc said it is quite an op to get over and would have only gained ME a few months, there’s a lot to weigh up for you, perhaps talk to someone professional not involved in your case to get an unbiased opinion.
I don’t think there is a right or wrong answer, sorry I’m not much help am I.
Good luck with your decision, keep us all posted
Wishing you well
Christine x
Hi Tisha, welcome to the group. I am sorry for the loss of your husband. You must be a very strong lady to have cared for him whilst dealing with your own diagnosis and chemo. As others have said I'd talk to your team about the debulking surgery, and by the team I mean everyone who would be involved, especially family and friends. You will need to be cared for when you return from hospital after the big op.
Wishing you further strength to make your decision. You'll find a lot of support here when you need it.
Sending a gentle hug.
Nicola x
Thank you for your comments x
I am so sorry for your loss and for what you have been going through and I want to send you a huge hug. Surgery is usually the best option for long term survival, I would talk it through with your Doctors with a view to going for it. I hope you'll have some help when you first come out of Hospital and make sure not to pick up anything heavy in the first 3 months as you'll end up with a hernia. All the very best Sue xx
Hello Tisha,
You have my sincerest condolences on the loss of your husband. What an awful year!
I had surgery before chemo as the indications were that I had bowel cancer- it was a bit of a shock to find out a few weeks later that in fact it was stage 4 oc. I have been exceptionally fortunate in my response to treatment and think that the debulk really helped.
If you are up to surgery and will have support afterwards then it may be a good move.
Do let us know what you decide and how you get on.
Sending you a big hug.
Joy x
God bless you life can be so cruel cant it, if it was me , ld have another word with your Doctor and see what he says. You sound like an incredible woman so brave . So sorry for your
Loss. But if it was me ld have it done, l am in a similar situation to be honest and l will never give up hopefully we've both got quite awhile left your in my prayers. Love & hugs sent your way. SheilaF
Hi Tisha
Deepest sympathies to you and your family on your loss, you are still very young and have many years as you say ahead of you and much to see and do with your kids and grandchild you have spent time nursing your husband through his illness, now is the time to go for yours and to take the years ahead of you as a beacon of hope if the operation is still available take it it's no bed of roses but eventually after the operation and all that brings you may notice an improvement in that you may may not be in pain and you may feel alot better with having the surgery, whatever you chose to do I wish you well, hopefully you will let us know what you decided to go for.
I am so very sorry for your loss. I think opting for the surgery is good- I don’t think they would be offering it if they didn’t think there would be a good chance off success. Even minor surgery comes with warnings. I had a huge operation with complications but was walking around within a few days. Wishing you the very best, Wendy
Hi Tisha. I’m so sorry about your husband. However yes you should have the surgery ASAP. It is the most critical factor in saving your life and you are still young. You may not be in the best place emotionally to fight for your life but please do it.
Sending many hugs.
So sorry for your loss. It must be terribly hard for you. I would go for the surgery. I managed very well with very little pain afterwards. I was pleasantly surprised. I had a morphine pump which I could control myself. It took me about 3 months to fully recover from the op. I just slept a lot in order to recoup and watched a lot of daytime tv. I should go for it! Good luck whatever!
thankyou
First, I'm so sorry for your loss. You were so faithful! Like the others, I would talk with your doctors and take time to think through it all, but I would also seriously consider having the surgery. I did; was in the hospital for 8 days; and then went through 8 rounds of chemo. I had two ports upper and lower. I'm convinced the surgery paved the way for the chemo to work well. My oncologist told me that cancer hides out. He even took out the fat layer that covers all of our tummies. I'm convinced that I'm here today because I said okay to his aggressive approach. And like someone else wrote: the recovery from the surgery was not that bad. I notice that you are in Texas. I had my surgery in Atlanta in a very large cancer center there. Wishing you the very best and also sending many hugs to encourage and comfort you during this time of loss.
HI TISHA,
SO SORRY TO HEAR ABOUT YOUR HUSBAND. NOW IT'S TIME TO TAKE CARE OF YOU. I'M ALL FOR SURGERY. I FEEL IT'S A LEG UP ON THE CANCER WHICH CAN MAKE IT MUCH EASIER FOR THE CHEMO TO CLEAR THINGS UP. WHY SPECIFICALLY DID YOUR DR. SAY IT WAS RISKY TO DO SURGERY? HAVE YOUR LUNGS CLEARED UP? THE CLOT? I THINK YOU SHOULD GET A SECOND OPINION. CAN THEY DO IT LAPAROSCOPICALLY? THAT'S WHAT I HAD TWICE.
HARDLY ANY PAIN AFTERWARDS. MAYBE A SECOND OPINION WOULD HELP.
GOOD LUCK AND BEST WISHES,
LEE
Thank you for your comments the fluid on my lungs went after the second chemo. I don't know why the surgeons consider me borderline I should have asked. As for the clot I am taking medication to prevent clots. I am assuming the clot has gone but when I asked they said they don't do a test to check.
I am so sorry for your loss. I am sending you strength, love and positive cives
I had it, also fluid on lungs afterwards. It’s a tough call sorry I am 55 and it seems I would do anything to live longer. If your quality of life physically is not bad maybe don’t. Big op.
Thank you for commenting, when i first met the oncologist she said i could have quite a few years extra to live but when I asked the surgeon how much longer it would give me she said about 20% (about 8 months) I didn't think it was long enough to go through an operation
Tisha 10, I know exactly what you are going through. You are likely to be both physically & mentally exhausted and grieving, so a very difficult time especially to be making life altering decisions.
Remember every case is unique, so perhaps a good idea would be to go back to the team that initially were prepared to do surgery & have further discussions, if necessary ask to be referred for a second opinion.
I was 72 when I was diagnosed & was given the option of chemo then surgery followed by more chemo or surgery immediately followed by chemo. As I was feeling so ill by this stage I opted to have surgery with all the risks. I was amazed at how quickly I recovered from 7 hours of surgery. Was back home completely on my own having chemo within 6 weeks.
I will add I had absolute confidence in both my oncology & oncologist and I personally think this is very important - neither did I have anyone dependent on me.
Best of luck in making your decision,
C
Hello Tisha, firstly my heart felt condolences at the loss of your husband, your sadness must be all consuming and now you must deal with this dreadful disease that has already robbed you of your husband please dont let it take your life as well.
I have been fighting Grade 4 OC since 2017 and I will continue to do so every single day. All life is precious, have the surgery and hopefully you will be monitored closely and will be able to enjoy the things in life you used to and maybe even something new. Good luck to you Tisha be brave have the surgery. X
I am so sorry for your loss. May you have all what you need now to push forward and look after yourself.
What I would like to add, from my experience about the debulking surgery, although most will be mobile after this major surgery, ie you can walk, go up and the downstairs, have a shower with some difficulties in bending to reach below the knees etc...you'll most certainly need to have someone who will look after you in terms of shopping, cooking, and other related house's chores. You will be in recovery and you need good food and a good rest. Besides, as you'll be told, you are not allowed to lift anything heavier than a half full kettle.
If you have no one near you to look after you perhaps you need to add this to the list of questions.
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