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Dilated Ascending Thoracic Aorta 4.2 cm - 4.6 cm

1 Recommendation

Dear Friends,
A recent PET/CT scan for ovarian cancer revealed this. I go in on Tuesday to meet with a cardiologist. Should I be worried? I guess that's a given, right? What do you think they will want to do at the appointment? I just don't have any idea of what to expect. I've never had any heart trouble before and I'm only 36. My only child is 10 years old, so it's not due to a recent pregnancy. Please help. Thanks!
Heidi

18 replies

Heidi,
By all means get a second opinion on this. Two heads are better than one on this issue and if they both say the same thing then fine. Then you can accept what you are told. My thoughts and prayers are with you Heidi.
Lois

Thanks Amy!

Believe in your heart that this doc got it right & be happy (while waiting for that 2nd opinion). With a decrepency of that size and this type of problem, you definitely need to get a 2nd opinion. Your cardio should always encourage this (it's his backup on a lawsuit incase something goes wrong). When the new doc asks why you wanted the second opinion, tell him with the difference in the test results, you would like another opinion. You don't have to switch doctors after the exam or be embarrassed in front of your origional cardio. You're not questioning his ability, you are verifying facts that pertain to your life. That is your responsibility.

You must be a nervous wreck waiting for all these tests and results. I had a benign tumor removed from my breast a few years back. The doc at the time told me most (like 95%) of breast tumors are benign. He said the soft tissue bruises easily & then calcifies, scaring the sweet bejeezes out of us. I don't have any experience with lung issues but I'm hoping for the best for you.

Hang in there!!!
Amy

" This morning I had a sharp pain running down my left arm for about 10 minutes. I have the holter monitor on until 2 pm today and I wrote it down on the diary thing they gave me. That has never happened before. Am I just becoming a hypochondriac?"

If this happens again, I hope you will call 911 (preferably) or call this doctor's emergency number. I am not a doctor but in my case, this meant an escalation of symptoms into heart attack. Doesn't mean the same thing is happening to you, but 10 minutes is a long time and signals something needs to be investigated. Anxiety is part of heart attack in women and can be a separate issue. You are not being a hypochondriac and I hope you will brush off any medical staff attempts to make you feel this way. Sounds like you are following the instructions to notate pains while wearing the Holter monitor....try not to put attach any judgments to pain symptoms...they are just there and you need to be vigilant now about what is going on with your body.

When I seek 2nd opinions, I ask for copies of my medical records/tests/etc from the current doctor and take them with me to the next doctor. There is no need to tell a doctor you are moving on unless you want to. You may need to head to your PCP to get referred to a new cardio, but it should be your call.

Best of luck to you. I hear how stressful it is to wait...I've been in your position many times and I'm still here (smile).

Jaynie

Jaynie,
Thank you so much for your input. I am feeling more and more like I probably should get a second opinion. Though how do I do that? Should I just call his number on the card he gave me and tell him that I'd like a second opinion? Should I insist on more tests? This morning I had a sharp pain running down my left arm for about 10 minutes. I have the holter monitor on until 2 pm today and I wrote it down on the diary thing they gave me. That has never happened before. Am I just becoming a hypochondriac? I know stress and anxiety can manifest itself in many ways. Should I have gone in?

Heidi,
"My echo looked normal I guess and it only measured about 3.8 cm on there, as opposed to 4.2-4.6 cm on the PET/CT scan. He said different tests can show different measurements. Though now that I'm thinking of it, that seems to be a big discrepancy"

Glad you caught this.........it may be pretty important. These scans are taken when the body is lying down.....how many of us spend our real lives lying flat all day long? It is when we are up and moving around, picking up heavy things like kids and groceries, exercising, that the pressures are most intense in the arteries. Keep in mind that current cardiac testing is set up for ease of use by medical staff....not to accurately portray what is going on in a patient's organs during active daily life.

Any aneurysm is a weak spot that will most likely keep getting thinner and more stretched. I'm saying this because aortic aneurysm-dissection is the most difficult to survive when it ruptures....this particular aorta is very large and a lot of blood volume flows through. Think about getting a second opinion on this because the location is critical...and the dimensions are borderline.

Good luck with the calcification thing.....my best friend just got a totally benign diagnosis on breast tissue calcification biopsy results.

take care,
Jaynie

Hi Linda,
Thank you so much for the information. I do really appreciate you sharing your experience and I'm so sorry you had to go through such a terrible ordeal. Thank God you are doing well now, but how scary that must have been! My doctor today seemed appropriately concerned and wants to stay on top of things, but said I could go on with normal life, no restrictions. My echo looked normal I guess and it only measured about 3.8 cm on there, as opposed to 4.2-4.6 cm on the PET/CT scan. He said different tests can show different measurements. Though now that I'm thinking of it, that seems to be a big discrepancy. Anyway, he called me personally this afternoon to tell me it looked good and that he'll look at the holster results as soon as I send it back to them tomorrow. I don't go back in now until December. I feel relieved, but wish we knew what caused my ascending thoracic aorta to dilate. It's not in my family that I know of.

Anyway, now I'm waiting to see a pulmonologist in two weeks because the PET/CT also showed some calcified lymph nodes and an unidentified dense 4 millimeter mass in my right lung. Hopefully that will be nothing to worry about. I guess all of this can be considered preventative care and I am very lucky that these things have been revealed to me so early so we can do something about them if need be.

I do appreciate your time and caring. I'll keep you posted. Thanks!
Heidi

Hi Heidi,
I hope you have good results, from the holster monitor for your heart. What happened with the echo results of your Aorta?? You said it was 4.2cm to 4.6cm..... I truely understand what you are going through today. Fear, nervous, confused, anxiety, etc. I avoided going into deep details about my situation, I was going to wait to see what your cardio told you today. Please take the advice I'm going to tell you, very serious.

I did not want to tell you "ALL" of what my situation was, because I didn't want to scare the hell out of you. Now I feel it's NECESSARY & IMPORTANT to tell you.

I started the care of my cardio Dr. in early part of 2002. I had an appt. w/ PCP, I was feeling tired & shortness of breath. Blood tests & many other tests, xrays, echo's and MRI showed I had 2 holes in my heart, (left & right Atrium), Aortic Stenosis and an aneurysm, 3.8cm on my Ascending Aorta. The hospital & the cardio. Dr told me the aneurysm would have to be 5.0cm before they would consider surgery. Under the cardio Dr. care from 2002 to April 2004. Approx. date, March 5th 2004, I saw my cardio Dr, had another echo, this time it was 4.6cm. I was told the same thing, could'nt operate yet. Approx. date, March 19th 2004, my second oppinion appt. at Cleveland Clinic. I was told when all of the test results were available, I would receive a call from the cardio Dr. from Cleveland. Before Cleveland Dr's. will operate, their criteria for determinating the size of the aneurysm, goes by the patient's size & weight. Not just a indicated measure of cm's. When Cleveland Clinic cardio called, the Dr. had to leave a VERY IMPORTANT message for me, was to call cardio Dr at Cleveland Clinic ASAP! Dr said I would have to be scheduled for heart surgery ASAP. My husband got the message 3 days later, because he was with me at the local hospital. I was taken by amb. to ER. The aneurysm expanded from a size 4.6cm to 4.8cm in a month. I had to have emergency surgery for "Ascending Aorta Aneurysm DISSECTED!!" The Thorasic surgeon told my husband that he had to perform open heart surgery, "glue" me back together within 45 minutes & said I only had a 30% for survival. I was in CICU for 7 days. I could go on & on, but I won't. I went through a very scarry & rough surgery. I had my second open heart Oct. 2006, at Cleveland. Many Dr's, & medical staff tell me, I'm lucky to be alive. I know I was blessed. I AM HERE TO TELL YOU, HOW IMPORTANT IT IS TO GET A SECOND OPPINION. I'M HERE TO LISTEN, UNDERSTAND & TO HELP YOU.

Please let me know how you are doing. I hope I did'nt upset you. Hope to hear from you soon.

Take care,
Linda
MomofCharm

Good news! My doctor did an echo and said it all looks really good. I am wearing a holster to monitor my heart rate for the next 24 hours, but he isn't worried. He said my dilation is borderline aneurysmal and he wants to see me in 6 months for a scan to check for any changes. Thanks so much for all of your support! I will be praying for all of you too!
Heidi

Thanks Linda and Amy too! I appreciate it so much! I'm getting ready to drive to the hospital for my cardio appointment now. I'm so nervous! Just fear of the unknown. Once I know what I'm dealing with then I'll feel better and can move on with whatever comes my way. I'll let you all know how it goes. Thank you again!
Heidi

We'll be thinking happy thoughts for you today!!!! Good Luck with the Doc!!!

Amy

Hi Heidi,
I wish I would have read your discussion yesterday, Sunday, May 31st. I agree with Terodac regarding her reply to you. When you see the cardiologist Tuesday, the Dr. will explain all of your options. Try to stay calm, take a deep breath, and have faith. If you have a question, you need to ask the Dr.,... ASK the question. ANY question is NEVER a stupid question. You should feel very comfortable & trust the cardio. Dr. completely.

I'm 56 & I've had 2 open heart surgeries & also surgery to remove my Thyroid in the last 4 years. I told my husband, he could call me "Mrs. T" now. (LOL) Keep your sense of humor, no matter what. I told my cardio. surgeon, "I plan on living a long time, just to piss my husband off!"....LOL. The surgeon had to laugh too! I also had an Ascending Aorta Aneurysm, 4.8cm. My last open heart surgery was 2.5 years ago. So, now I have a reconstructed & repaired Aorta, repaired 2 holes in the left chamber with patches and also have an Aortic Valve replacement. I chose to have the St. Jude artificial valve.

IF your CARDIO. DR. SUGGESTS surgery to you, listen to the Dr. very carefully. Yes, the surgery is serious. BUT, YOU CAN DO THIS!! You are young and have alot of love to give. Keep your faith, the love & happiness of your son, within your heart at all times. This will keep you strong & help you with everything.

You are in my prayers tonight. May God bless you & give you strength. Please let everyone know how your appointment went with the cardio. Dr.

Linda
MomofCharm

Take care

Thanks Terodac! I'll check out that website.

I have had this surgery along with a valve transplant 2.5 years ago. I did fine, but I can tell you it is a hard surgery to have, you have to have a strong will to live! and you do because you have a child! A very good web page I am a member of is valvereplacement.com not only for valve replacements but also many have had aneurysm repairs. That is what you most likely have is a aneurysm, and you are very lucky they found it, I went in for a stomach problem. Good Luck, if you have any questions please let me know! God Bless!

You are right. Thanks again!

Good luck on Tuesday Heidi, I'll be sending positive vibes your way. I know how worried you are.
On the positive side you've been lucky, a possible problem has been picked up and now the experts will be able to look after you. Try and focus on that, IF you need any treatment you'll get it, if not, your mind will be put at rest, either way you're in a win win situation!
Please let us know how you got on.
Big Hugs,
Lidia xx

Thanks Lidia! I'll know more on Tuesday, but I'm just stressed out.

Hi Heidi,
I'm sorry I can't actually help with any information but I just wanted to say try not to panic, it must have been one hell of a shock for you and Tuesday is a long way off which is horrible, waiting in awful, I'm pretty sure someone who knows something will reply soon, hang in there and stay positive!
Hugs,
Lidia xx

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