Concerned about my cancer spreading to lungs - intestines

[KrazyKat68]

stage 3C OV cancer in remission. I was diagnosed with stage 3C Ovarian Cancer in July of 2015. After complete hysterectomy, 6 rounds of taxol/carbo as of today I am cancer free. I was getting CT scans every 6months until November 2016 - now every 6 months. My next one is next month (May 2017). I have been having lot of constipation and some heart palpatations/breathing issues. My cardiologist cannot find a heart issue causing the palpitations/breathing problems. Could this be a sign of a recurrence of my OV Cancer spread to my lungs, or intestines? I am also exhausted and have slight pain/cramping in pelvis. I have not mentioned it to my oncologist because I am due for my CT scan in a few weeks.

[CallmeMum]

Hi lovely I'd mention it to your onc they might push the scan through quicker to find out what the issue is xxx

[KrazyKat68 in reply to CallmeMum]

Thanks for your reply. I finally did call today, because the pelvic cramps seemed to be getting worse. Glad I did and wish I would have called sooner. Tomorrow I go for the CT scan that was originally set up for next week. It is probably nothing, but if it is something, better to find out asap. Thanks again.

[KrazyKat68 in reply to CallmeMum]

Not sure if I replied previously. I had a ct scan and indeed I do have a reoccurrence. Starting chemo on Thursday. I wish I would have paid more attention to my body signals sooner.

[CallmeMum in reply to KrazyKat68]

The problem is we can all get paranoid. My son has special educational needs and his 1 to 1 resigned due to stomach issues she called me to explain her reasons and the first thing I said was OMG you have cancer (she hasn't) and that's because I'm paranoid anyone I know that gets pains I'm like go get checked out and don't take the IBS rubbish they'll throw on you! So don't worry about the fact you didn't look at the signs, it's getting sorted now xxx

[Emalou71]

Hiya, I too had some palpitations and went for a heart scan had ecg etc. Nothing found my oncologist has put this down to the long term side effects of the chemo.

I did get a reoccurrence and it did come back in my lungs the only thing that was different was when I breathed in deeply on occasion a felt a slight pushing sensation.

It's rotten isn't it everything worries us so much I've had some discomfort of late and was worried it was back but the scan was clear. I hope the next scan continues to show you are still cancer free. X

[KrazyKat68 in reply to Emalou71]

It is sad that every time I get any ache or pain anywhere in my body I automatically think "cancer". I appreciate your thoughts about my issues. May you also stay cancer free.

[KrazyKat68 in reply to Emalou71]

I had a scan end of April and my cancer is back in my peritoneum. I start chemo again this Thursday. Trying to wrap my head around this new development. I am not surprised as I know OC is a tricky cancer and most women do have a reoccurrence. I was just hoping for another year or so before it came back. Not looking forward to this again.

[Emalou71 in reply to KrazyKat68]

I'm sorry to hear this, that sucks 😔 I can only imagine how your feeling and trying to get your head around things it's really pants!! What chemo are they putting you on? Xxx

[KrazyKat68 in reply to Emalou71]

Carbo and Doxil. I have 2 oncologists. One local and one at Johns Hopkins (gyn-oncol-surgeon) who did my initial surgery. They don't agree on treatment. Local doc wants to give me carbo & taxol what I was on previously. Hopkins doc said she wants the carbo doxil combo. It is impossible to know which plan will work better. I went with thy Hopkins doc because she sees gyn cancers a lot more than my local oncologist.

[Emalou71 in reply to KrazyKat68]

Oh my... That's awful not only are you reeling with the reoccurrence your having to deal with two oncologists, that's not on. I can only assume they have strong reasoning for the disagreement? Totally understand you going with the Hopkins Doctor.

I hope it does the trick for you and gets it under control, please let us know how you get on xx

[KrazyKat68 in reply to Emalou71]

thanks for your support. I thought I was mentally prepared for this next go around, but today feeling unbelievably anxious and overwhelmed with trying to get as much done as possible before I start chemo as I don't know how my body will react to the doxil.

[Choski]

Yes, as has already been said - speak to your oncologist or nurse today to let them know what's going on. You know you need to tell them, yes the fear of 'what if MAY be' is sometimes difficult to cope with but you do need this checked out.

I had small,blood clots leading to both lungs and am on blood thinning injections and my Onc always checks and listens to ny lungs.

Wishing you well, please call today and get checked out

Thinking of you

Clare xx

[KrazyKat68 in reply to Choski]

Thanks for your advice. I called my oncologist today and she set up an appointment for my CT scan for tomorrow instead of next week. I should have called weeks ago when this first started, but I just kept thinking it was a heart issue and just "old age" aches and pains. I sometimes feel like I am being a hypochondriac and that is why I put off calling the doctor hoping it will go away. Thanks for your good advice. I hope you stay healthy and cancer free.

[Purple-iris]

Hi

Probably a good idea to mention it to your CNS or team . Hopefully they can see you sooner to check you out and put your mind at rest . I am only 3 months post chemo , on maintanance Avastin and have bloods every 6 weeks but still worry about every time I get out of breath , every twinge and change to bowls . Hoping it will get easier with time but probably not !!!

Sending you a big hug and best wishes for your next scan . Stay strong love Kim X

[KrazyKat68 in reply to Purple-iris]

I finally called today and my CT scan has been moved up from next week to tomorrow. I should have made the call weeks ago. I just kept thinking I was over reacting and didn't want to sound like a hypochondriac. Thanks for the good wishes and hugs. Sending them back to you too. Stay healthy, strong and cancer free!!

[LesleyGreengran]

There are lots of other reasons for those symptoms, but as others have said, perhaps you could get your CT scan brought forward? You don't say when it is in May but even a week or two might mean less time for you to worry. It's easy to think every health problem we get is related to the OC but sometimes it's something minor.

[KrazyKat68 in reply to LesleyGreengran]

I am hopeful that it is something minor or at least something unrelated to my OC but I finally did call my oncologist and had my scan moved up to this week, so at least saves me thinking and worrying about it for another week. Thanks for your advice. Stay healthy!

[LesleyGreengran in reply to KrazyKat68]

Great that your team listen and you have less time to wait.

[Barlow1951]

I agree with the other responses. Recently I developed breathlessness so contacted my CNS and my oncologist arranged for me to have an urgent CT scan to rule out blood clots as a cause. I had the scan within a week and it was clear. Don't wait until your next scheduled scan but contact your team today.

Hope you can get the scan brought forward and try not to think the worst as the symptoms could be due to many other things.

All the best and take good care of yourself.

Barbara

[KrazyKat68 in reply to Barlow1951]

Hi Barbara, I appreciate your advice and I finally called my oncologist today and am getting my scan moved from next week to tomorrow. I could kick myself for not calling sooner. I am trying to remain positive but no matter what, I will feel better getting it over with and not having to wait another week to find out. I am glad your scan was clear.

[thesilent1]

I think I'd phone your CNS and. Mention this to her. She might' be able to get your scan brought forward or at least get them to Include your lungs in the scan. Ann xx

[KrazyKat68 in reply to thesilent1]

Thanks for your advice. I did call today. Probably should have done it sooner and at least I wouldn't have had to worry all this time. I am getting my scan tomorrow.

[barboo]

Hello, KrazyKat68. 19yrs ago I had endometrial cancer 'uncontained' plus, ovarian cancer the same stage as you. Following my radical hysterectomy and 6-months of Carboplatin Chemo, I endured cramps and pains, too - which, seemed to correlate with the time I'd normally be having my periods? I know, it sounds a bit wacky but it was suggested to me, 'it could be body memory'? You also have to bear in mind that you've had a major operation and it takes a long time to heal properly. Trust your Oncologist and scan results, if they detect anything abnormal, they will tell you! Unfortunately, when my chemo came to an end -overall body pain remained with me, which later was diagnosed as fibromyalgia that I still suffer from today. Although I don't think it was a side-effect of chemo, more likely occurred because of stress and anxiety. As for my body, that took at least 2-yrs to really heal. Hopefully, you'll continue your good fight by remaining calm and positive. All the very best.

[KrazyKat68 in reply to barboo]

This information is really helpful. I almost feel like these pains are somehow from the surgery or chemo, and that's why I put off calling my oncologist. I had my surgery 2 yrs ago next month but the cramps seem to be getting worse which is why I am concerned especially with the constipation and the palpatations. It is also quite possible that I am just overreacting because every little thing makes me think I have a my cancer back. I have always struggled with anxiety and control issues, so although I try to always remain positive, staying calm is not easy for me. I was diagnosed with fibromyalgia prior to my OV cancer diagnosis and I am also thinking the pain could be that because lately I seem to have fibro pain in other areas of my body. Funny thing when I was getting chemo, all of my fibro and arthritis pain totally went away. Other than the tiredness and nausea I felt better than I had felt in years. I finally called my doc today and had my scan moved up to tomorrow. I hope you stay cancer free and healthy. All the best to you too.

[KrazyKat68]

Thank you all for your helpful comments. I had my CT yesterday and follow up with oncologist today. Not good news. My OC is back throughout my peritoneum. One 3.5 cm and lots of smaller ones. My local oncologist is consulting my Johns Hopkins Gyno oncologist to decide on treatment plan. She wants to do same chemo as before if JH doctor agrees. She does not think surgery is an option for me. I am not surprised as most of my type of OC returns within 3yrs, but sort of in a state of shock at the moment.

[Barlow1951]

Glad you were able to get your scan moved forward but sorry the results are not what you wanted even though you had suspected the cancer might be back. Not surprised you are in a state of shock at present. It does take time to assimilate and get your head round such news. Hopefully you will feel better once you have a treatment plan in place.

Take good care of yourself and have lots of treats!

Best wishes,

Barbara x

[KrazyKat68 in reply to Barlow1951]

I know this should be the last thing I should care about, but first thoughts are really crazy when you are dealing with cancer, treatment etc. My first thought was oh no -----Not in the summer again. If it had to happen again why couldn't it have been in the winter months!!!! Thanks for your reply. You take care too!

[Ange09062016]

You are getting treated at Johns Hopkins? So did I. Did you have a debulking surgery too?

What were your symptoms? Just breathing difficulties?

[KrazyKat68 in reply to Ange09062016]

I had my initial surgery (radical hysterectomy and debunking) at JH July 2015. I had my chemo treatment at a local hospital. Around March of this year I began having palpitations/lightheadedness and saw my cardiologist who did not discover the problem. A few months before that I began to have some cramping in lower pelvic and then it got worse and now also in my inner thighs. I also started having problems with constipation and shortness of breath, tiredness. I had been doing a lot of strenuous stuff including joining a fitness class so I thought it was from that. My last ct scan was in Nov. and it was clear so was put on 6 mos. scans. I called my local oncologist and she moved up my 5/9 scan to yesterday. found the cancer in my peritoneum and one spot very close to my liver. local oncol is co coordinating a treatment plan with my gyn/oncol at JH. I live in DE. I am on pins and needles waiting to hear back from either one of them. Doc says she wants to start chemo no later than 2 weeks.

[Ange09062016 in reply to KrazyKat68]

I'm so sorry for the news but just like it went away one time it will go away again! Keep the faith and hope. I know it must be extremely difficult but just keep meditating on positive thoughts. Johns Hopkins has a great team. I had my debulking with Dr Fader there in Dec 2016. Is your CA125 elevated also? Were you BRCA positive?

I'm BRCA positive. Thank you for sharing your symptoms, it is very helpful.

[KrazyKat68 in reply to Ange09062016]

Your reply was very good for me to read. I had my surgery with Dr Temkin, who is no longer at JH. My CA125 has never been elevated even when I was first diagnosed. It is always within normal range. I am not BRCA positive. I can't wait to just get on with the treatment. My local oncologist still has not sent CT scan to Johns Hopkins for review. My new doctor at Hopkins is Dr. Wethngton. She just started at JH this past January. Thank you so much for your insights and positivity.

[MyLife1]

Have your ct scan this will put your mind at ease. It's hard never knowing if it's the cancer or another symptom starting. My breathing issues are the fluid in my lung . There are amazing things bieng done I cross my fingers for you and hope it's a minor problem or no problem at all xx