High Grade Pleomorphic Cardiac Sarcoma.

[Mummypig1]

Has anyone any experience of a Cardiac Sarcoma (cancerous tumour inside the heart). My daughter was diagnosed with a very rare High Grade Pleomorphic sarcoma inside her heart last year. I’m researching to learn more but there’s so little information on it.

[CBH192]

Hi, I’m so sorry to hear this. I understand it’s not the same but I had a left atrial myxoma (benign cardiac tumour) removed via open heart surgery last May. Sending love to you and your daughter x

[Mummypig1 in reply to CBH192]

Thank you so much for replying. I’m sorry you’ve had to go through that, what a horrendously scary time to go through whilst pregnant. My daughter is only 14 and had what sounds like a similar operation. 7 and 1/2 open heart surgery on bypass to remove the tumour and repair the mitrial valve. They originally thought it was a Myxoma until it came back from the labs as malignant. I hope you don’t mind me asking, but I’m trying to gain as much understanding as I can to support my daughter. I appreciate you’re probably tied up in baby stuff now though and maybe haven’t really had the chance to work through it all.

How do you feel about having had the operation now? Do you think you’ve been able to process it or is it something you think you might need support with at a later date? My daughter doesn’t talk a huge amount so I want to make sure support is in place if she needs it. Thank you for replying, it’s all so rare! X

[CBH192 in reply to Mummypig1]

Hello it is my pleasure to reply. When I was diagnosed, I couldn’t find anyone to connect with because they are so rare! Yes, our operations sound very similar, I also had a mitral valve repair. As a mum to (healthy baby boy delivered in September!) and 4 year old daughter, I can’t imagine how afraid you would have been. My dad still says now it was the worst day of his life and I’m 30 lol. Personally for me, it has been a massive shock and one that I’m still trying to come to terms with. I had very sudden onset of symptoms (chest/back pain and breathlessness) which we originally thought may be a blood clot. One week from diagnosis and a self isolated stay in hospital I was operated on! So it came as a terrible shock and not one I was prepared for! Does your daughter require any further treatment? For me, the physical recovery has been much easier than the mental one. I have asked my GP for a referral to a counsellor. For 90% I am ok, but there is a 10% of me that still can’t believe it has happened and has left me with cardiac related anxiety. I think that may be something I will always live with? But in time I hope it will lessen. Now I am fit and healthy, keeping active etc but I still have the ‘why me’ moments! When in reality I have been incredibly lucky that it was found! How does your daughter feel about her scar? As that’s another aspect to get your head around! X

[Heidi67 in reply to CBH192]

Hi I hope you dont mind me sending a message but you are the only person I have met who has had a myxoma. I had open heart surgery to remove a left atrial myxoma on the 19th Nov. It was diagnosed 4 days before. I went for a Echocardiogram and was not allowed to go home. I feel like it's all been a dream. It's been 15 weeks since my op and I went back to work at 12 weeks. People comment on how well I look but inside I feel traumatised. I'm still having problems with fast heart rate and had 24 hr monitor but I also know it could be anxiety. I'd love to know how your recovery has been.

[CBH192 in reply to Heidi67]

Hello and lovely to meet you! I think you’ve hit the nail on the head, looking well on the outside but feeling traumatised on the inside!! Like you I was diagnosed via echo and didn’t go home until after the op! I think you’re doing very well to be back at work, I was pregnant at the time so took early MAT leave as didn’t feel mentally ready to return! Physically my recovery has gone well, have you been offered cardiac rehab? I did 4 or 5 weeks with a lovely team and it helped me realise I was safe to exercise! I had a slight setback 2 weeks after my op, I ended up with a nasty infection in my scar and was re admitted for 10 days that was hard. The mental journey is a hard one! It has left me anxious for sure! I think open heart surgery is one of the biggest things our body can go through and I’ve read a few times here that it can take a while for our brains to catch up with what’s happened! It’s so hard to believe it’s happened isn’t it? xx

[Heidi67 in reply to CBH192]

I know how scared I felt before the op I can only imagine how you were feeling being pregnant. Scared is putting it lightly terrified is probably more accurate. I didn't get cardiac rehab it wasn't offered to me. Up until 10 weeks after my op when I had my follow-up appointment I didn't have any contact from the hospital. I spoke to a doctor at my surgery and he had never met anyone who had this done so couldn't give me any advice. He was asking me questions. I went back to work to see if being around more people would help me mentally. Not sure if it's worked. It is hard to believe that it's happened. I can sometimes forget about it for a few hours but then I see the scar xx

[CBH192 in reply to Heidi67]

The scar is such a huge reminder. Unfortunately, I would say that I think about what’s happened to me every single day 😪 I also get a lot of flash backs. I can be doing simple things around the house and for a few seconds I’m back in the hospital xx

[Mummypig1 in reply to Heidi67]

Hi Heidi,

So sorry you’ve had to go through that trauma also. We were told my daughters tumour was a Myxoma initially, but then after her 7 1/2 hrs open heart surgery on bypass we were told it was malignant. Only 35 ever cases recorded and only 2 were children which is chilling.

As such she not only had the surgery but chemotherapy (which has been horrendous) with the last one to be given next week. Following on from that she has to have 33 rounds of proton beam therapy (radiation)

She has been incredible and tackled each challenge head on, myself and my husband however are still processing.

You mention cardiac rehabilitation, and tachycardia - she periodically gets a fast heartbeat but we put it down to chemo. She doesn’t seem worried about exercising when this is all over, but as her mum I’m terrified of not watching her every second of the day.

She looks incredible but lost all her beautiful blonde hair and her little body now has so many scars on it.

Guys having gone through the OHS side of it, how would you best want to be supported? She’s only 14 but an absolute warrior!.

[CBH192 in reply to Mummypig1]

Gosh, you all sound absolutely incredible. What a time you are going through! 😪 i suppose people deal with it differently, if she feels like talking and displays any worries just re assuring her that what she is feeling is so so normal. I found myself going over and over it and talking about the same things over and over. If she needs to repeat just let her, it’ll help her process it. If she needs a good cry that always helped me feel a bit better! I ended up writing my feelings down in the end because I was driving myself mad with the same old story going through my mind. It actually really helped and reduced me obsessing slightly! I truly am sorry you are going through this 😔

[Heidi67 in reply to Mummypig1]

Hi there, you and your husband are doing an amazing job supporting your daughter. Your daughter is incredible to have gone through such a traumatic operation and the treatment she is still having. I also find myself talking about what happened. It helps me digest what I've been through. Maybe buying her a journal will help. Sometimes children don't want to worry their parents when they know they are already worried. I am 54 and I have a 14 Yr old granddaughter who will confide in me. She may still be processing it all. I think it's going to take me a long time to feel like my old self again. Just keep doing what your doing x

[Mummypig1 in reply to Heidi67]

Thank you. She’s actually writing a book/technical journal about it already! As it’s so rare she thought she’d record her experiences for the medical professionals. She’s amazing, we might see if we could get it published (small scale) and sell it with the proceeds going to the Evelina Children’s hospital and a charity here that have been phenomenal. Blows me away!