Aa
Aa
A
A
A
Close
Avatar universal

Anyone gone through this who is also a Cardiomyopathy Patient?

Hi all!  I am looking for anyone who has suffered through either non-malignant or malignant ovarian issues that has Left ventricular Cardiomyopathy.  I just found out that I have a solid mass on my right ovary no fluid or cyst that has developed very quickly!  I had a CT on my abdomen and pelvis in July of 2011 prior to my gall bladder surgery on August 24 of this year and it was clear.  I have a grapefruit size mass there now and an elevated CA125 with a horrible family history of Breast, ovarian, etc cancers.  I also suffer from Cardiomyopathy and my heart only functions between 30 and 35%.  I am wondering how well you tolerated the surgery and chemo if necessary.  I see my GYNONC on the 22nd of this month and will schedule my surgery.  I do know that most recent ct showed no lymph involvement so I am happy about this.  I am going to have a total Hysterectomy and cannot take hormone therapy due to a past history of Pulmonary blood clot.  How have you ladies dealt with the lack of hormone therapy.  I am relatively young only 46.
14 Responses
Sort by: Helpful Oldest Newest
155056 tn?1333638688
Mishelle, private message me if you would like to be in touch with someone.  I have a friend that is a Primary Fallopian Tube Cancer thriver, I am certain that she will answer your questions.  She also has a cousin diagnosed with PFTC too.
Helpful - 0
Avatar universal
On Jan 26th I had my radical hysterectomy done via Robotic surgery that lasted 8hrs!  I went home the next day crazy but did and am doing pretty well.  I got final pathology on Friday the 3rd, Primary Fallopian tube endometrial adeno carcinoma stage 2 grade 2.

I am being told this is a very rare cancer but is treated like ovarian cancer.  I will do a follow up with the doctor on the 24th of this month then start the first of my many rounds of chemo.  I am curious if anyone out there has primary Fallopian tube cancer or if there really is much of a difference.
Helpful - 0
Avatar universal
my gyno thinks it could be both.  She made excuses for him she did her residency under him.  Unfortunately she is on vacation this week soooo here I sit.  I do have an elevated CA125 she is unsure if this is from the ovarian mass being ovarian cancer or if the cervical/uterine spread to the ovary. I am so confused right now I could just scream.  i am going to wait until the cone biopsy comes back and see what it says.  then I will either switch to his partner who specializes in cervical/ovarian cancers if they will allow this or go to an entirely different surgeon.  I have a stand by appointment with her on the Tuesday after my cone surgery as long as the test results are back by then.  This has to be the most frustrating thing I have ever dealt with.  Everyone is just sitting around making me wait instead of getting me in to someone else who can get this done faster.
Helpful - 0
187666 tn?1331173345
I'm so glad you wrote back. Our computer has been acting up so we took it to the "doctor" to get it fixed. I'm checking in on a laptop.

You had a very bad experience with that surgeon. He seems to be overly confident in himself and that no one should question him. And he sounded more interested in playing with his robotic toy than fixing your problem. Plus, to make you wait over and over again for hours at a time shows a complete lack of respect.

My cardiologist was the chairman/head of cardiology at a large medical university here in town and he never treated me that way. When I had an appt. with him, he may have been a bit late at times (maybe 20 minutes) from helping another patient but when he was with me, his focus was on my problem, my concerns and he took care to explain everything and answer all my questions. Each patient was important to him.

I'm sorry you have to go through this again. I'm very glad you explained all this to your gyno and she knows what happened. I bet she doesn't refer anyone to him again. Can she find another surgeon for you or is it something you have to do on your own? And is your gyno now saying it's cervical cancer, not ovarian? Wish we all knew what was going on.

Keep us posted. We all want you to get through this and be healthy again.
Helpful - 0
Avatar universal
Thanks for the response and Barb you made me feel better.  I did walk out but should have sooner.  I feel trapped with this surgeon because I will have to start over.. sigh
Helpful - 0
Avatar universal
A baby, not even you have more patience than me I would of walked out after i talked to the nurse the first time.  If you trust your gyno go with her but you could not pay me any money in the world to go back to that surgeon he sounds like a joke to me, but I am kinda a no-nonsense person when it comes to my health I want straight forward answers and if my surgeon does not have all my test results I tell them to call me when they do.  Were not dealing with a common cold here.  Good luck your lucky your husband is willing to question him also that helps alot to have someone back you up
Helpful - 0
Avatar universal
Ok so went to see the surgeon waited 2 hours he came in introduced himself did a quick pelvic sat down spent maybe 20 minutes with me said .. well I do not think this is cancer.  I said ok why is that .. well I can just tell from the ct my husband spoke up and said what about the elevated CA125 and so forth well I still do not think it is cancer so we will do this robotically and when I get in there if the path comes back while in surgery or I think it looks questionable I will have to cut you open.  Uh.. ok you do know about my heart this will take a lot longer.  Yes and you will see one of my cardiologists.  Why would you not go over this plan with my cardio guy who knows my history.  That is not how I do things.  Ok.. I have an issue with this.  well we have cardio guys running around here all the time.  I am about 2 weeks out on surgeries we only have 2 robots.  Have a seat in the waiting room my nurse will come in and get you and discuss the surgery date and pre op .  Oh but wait do you have your pap and tissue biopsy results.  I said uh no you should have them... No I do not I am sure they must be normal or they would have sent them.  My husband and I look at each other like we saw an alien.  I go to the waiting room 1.5 hours later  here comes the nurse takes me in a room goes over the procedure then proceeds to tell me it will be Feb 6th before we can do the surgery.  My left leg is swollen I hurt and they want me to wait another 7 weeks.  I said uh no that is not going to work for me.  I will opt to have the traditional surgery.  Let me go talk to him...45 minutes later no he will not do the traditional surgery we will have to leave it in Feb.  I said ok if  he is sooo sure it is benign from just looking at my CT when all of my blood work indicate otherwise how bout I call my gyno and talk to her and see if she will a. do the surgery or b. recommend someone else.  Oh well let me see what I can do. 1 hour later no luck this is the best we can do for you it will be fine he knows what he is doing.  Ok.. I said ok fine I will call my gyno and talk to her since she referred me here and see what she says walked out.  Called her... she was in surgery she calls me Friday afternoon tell her his reaction she did not believe it said i must have misunderstood..  I said nope and if he is so convinced he can tell from a ct it is benign I want you to do the surgery.  She but you need a radical hysterectomy your cervix is involved and you must have a cone surgery performed for staging before we do that.  I am like back up what the hell are you taking about. She said he did not go over your pathology?  I said nope he said he did not have it.. She said  you have cervical cancer and that is most likely why you left leg is swelling.  He did not have all of his information or he surely would not have told you this and with your numbers I do not understand why he told you what he did.  I said ok lets get the cone surgery done asap.  I will decide what and who I want to do the surgery at this point.  So Jan 11th I go in for the cone surgery and a couple needle biopsies and additional tissue biopsies.  I do not like the way this is being handled am I being a baby?
Helpful - 0
Avatar universal
I also read that most mass's are not cancerous so I am keeping this in my head as well.  I kinda figured that the surgeon would have a gut feeling when he gets in there he has been doing this for over 35 years soooo... I am sorry o hear about you as well Barb992. I am being told now if I do end up having chemo I will be hospitalized and it will be done over the course of 2-3 days. I did get a biopsy back on a polyp from my cervix it was abnormal but they said he would discuss all this on Thursday.  Come on Thursday!
Helpful - 0
Avatar universal
I am new to this forum but have had my share of health issues with my chemo, I have 2 artificial valves in my heart not the same problems you have but the chemo did knock my heart out of rhythem meds did not get it back into rhythem so was cardioverted.  I am on blood thinners also.  But there are certain chemos that affect your heart as was stated all ready in another post but your doctor should and probable knows this just make sure to ask.  I am back on chemo unfortunately my remisssion only lasted a few months but I to had a echo of my heart before restarting the chemo just to be safe good luck/
Helpful - 0
187666 tn?1331173345
When I had my surgery the doctor was able to pretty much tell whether it was cancer or not. An oncologist has lots of experience and knows what looks OK and what looks bad. But they always send it off to the path lab to make sure. And that does take time. After your surgery the doctor will give you her/his impression of the mass, good or bad. I'm still hoping you have a good outcome. Not all solid masses are malignant. I keep saying that hoping it will be true for you. I read that more than 90% of ovarian problems/cysts/lumps are not cancer. So I'm trying to keep a good thought.
Helpful - 0
Avatar universal
The only thing my Cardio guy said was there are types of chemo that are a little more heart friendly but we will discuss this later. I know I will continue to take my meds he did say this and yes 35  is better than 18.  I am hoping this is as they think a stage I or II.  Everything I am reading says the final biopsy reports can take up too 2 weeks is this true? Good grief that is a long time to wait....sigh
Helpful - 0
187666 tn?1331173345
I wish I knew. Obviously you shouldn't stop your heart meds because they keep the EF up closer to normal, not that 35% is fantastic but it is better than 18. The ICD will keep the rhythm in check.

There must be some women on the forum who know whether chemo affects the heart or not. Please tell if you have some info.

Another question is how will chemo, if you need it, interact with the heart meds. That's always important to know.

Your surgery is next week. I'm still hoping for just plain lumps and not cancer. Please keep us posted.
Helpful - 0
Avatar universal
Thank you for answering me so quickly!  I do have an ICD and no I am  not on blood thinners! I have seen my Cardio guy and I had a stress test less than a year ago but feel I should have another dopplar prior to surgery to veriy my EF.  It has come up trust me it  was 18 in December of last year and by April the meds and such finally kicked in! I was just wondering how the chemo will effect the heart and if anyone had any info.  I see the surgeon on Thursday so this will be the 2nd one and I am assuming we will schedule surgery soon.
Helpful - 0
187666 tn?1331173345
You have more than your share of health problems. Can you hear me screaming "This isn't fair!" ?  I wish I knew the answers. Certainly the oncologist will have to know your heart health problems, what medications you're taking, especially if you're taking a blood thinner. Do you also have an ICD? Your EF is a bit on the low side so I was wondering.

I have heart problems but they're minor compared to yours. I have life long arrhythmias, various types. Before my surgery to remove ovary and such, I had to go through a stress test and make sure I was consistently on my Diltiazem before the surgery. It all went well but I didn't need to follow up with any chemo.

Please make sure your cardio is involved in monitoring you through this and that the onc and cardio communicate well about your health. I'm hoping and praying your ovarian mass in NOT malignant. I know the tests don't look good but I can still hope.
Helpful - 0
Have an Answer?

You are reading content posted in the Ovarian Cancer Community

Didn't find the answer you were looking for?
Ask a question
Popular Resources
Learn how to spot the warning signs of this “silent killer.”
Diet and digestion have more to do with cancer prevention than you may realize
A list of national and international resources and hotlines to help connect you to needed health and medical services.
Herpes sores blister, then burst, scab and heal.
Herpes spreads by oral, vaginal and anal sex.
STIs are the most common cause of genital sores.