Mother just diagnosed

[lacrosse123]

Worst year of my life. During the pandemic, my mother woke up one morning with a severe headache & join pain the previous night. Hours later after severe trouble with breathing my father brought her to the emergency hospital. Hours later after the doctor had noticed irregular heart beats and severe trouble with breathing as well as severe pneumonia they put her on a ventilator after oxygen hadn't been sufficient. She was under for two weeks on ventilator support but was making progress during that time even though at first her major organs were failing as the ventilator was a necessity. The doctor day 1 called it a "classic covid case, which she ended up not having) as she had covid like symptoms and severe pneumonia. She was abruptly med flighted a few days later after they had noticed a mass on her heart which they didn't specialize in. Once her body was able to undergo open heart surgery they removed the mass and at the time we were pretty certain it was an atrial myxoma (my mother is 52 years old, overweight but in good health) she is now home after 20+ days of being in the hospital away from us and is recovering extremely well. The surgeon/doctor was very confident the mass was benign after the surgery occurred but today 1 week later we received a phone call after they got a second opinion that it is in fact cancer and she has sarcoma. Of course, I've been googling googling googling. Among everything I found, I can tell this is pretty rare cancer but she's going to a good place to get help here in Boston soon, of course she is still recovering from her 2-3 weeks of being on a ventilator and open heart surgery. It's very early in but this is scary to me as it seems that this cancer is very aggressive and the death rate is very high after 6-12 months of surgery, but is often cured/handled by surgery (which she already had) and it seems that most patients are fine for about 6 months until possible cancer spread occurs/had occurred. Is it really bad or good that the mass/tumor was on her heart? I read that sarcoma comes back often and comes back often in the same area, would she survive another open heart surgery? It seems that my mom already having the surgery done is huge but its scary to me as its cancer and it sounds like it being on the heart already isn't good but the doctor in the brief call today mentioned they didn't see any red flags yet in other areas, does this cancer spread around the brain at all? Because we remember when the doctor mentioned during her early symptoms they noticed some irregularites around her heart (which was a mass) that there were some in her head too....which is extremely scary as that leads me to wonder if she already has it....but I can't find anything about it being on the brain, what does she eventually need to go in for in terms of scans and such? I'd greatly appreciate any information whatsoever.

[iloveyoudearly7]

Hi Iacrosse123,

I am sorry to hear about your mother, my mother had sarcoma as well, however it originally started in her womb, slowly travelled to her bowels, her lungs and did eventually hit the brain too. But she was stage 3 and was nearing 4, so it was considered a difficult case to begin with. 

Every case is different and you should never compare yours to someone else's.

[lacrosse123]

Hi iloveyoudearly7,

Thank you for sharing this with me. I can't imagine what you went through but I believe your mother is in a better place now. Thank you for sharing that & that is definitely a true statement. What's most scary I believe with sarcoma is that it being an already "rare" cancer, it's even more rare as my mother has cardiac sarcoma so it's a rare type of already rare cancer. We find out within the next week how far it's spread (if it has) but from what I'm reading/hearing it's aggressive.

[iloveyoudearly7]

Hi,

Thankyou for your reply, I'm happy that you shared that with me. If the sarcoma is the soft variety then it won't be as aggressive than it's other forms and tends to grow more slowly from what our recommended expert told us. I highly recommend you contact the cancer council so that they may direct you to an expert in that field. (Ours was very rare as well but they directed us to the perfect doctor, who tried everything and test to save her).

[lacrosse123]

She's very fortunate to be going to a great facility in our country as we are in New England. She's also not too old as she's younger than 60. It's very scary as I can't stop researching recurrence, death rate, types of tumors/grades, where the cancer can spread. She is doing her testing within the next week to see if it's spread but as of right now it appears it hasn't from her former scans. It's just such a rare cancer that it seems like the majority of research/statistics don't look good. As in, it seems like this cancer always comes back and the 5 year rate doesn't look great considering that as of right now the only tumor they found was in fact on her heart...which definitely seems pretty scary. It was also a bit over 5cm which from what I've researched seems to have a high rate of spreading by then. I'm so sorry for everything that you went through and have such an appreciation now after just dipping my toes in the water so far as to how hard this can be for many people.

[iloveyoudearly7]

It's great news that your mother is going to such a esteemed facility, surrounded by experts right at your fingertips. It's nature is googling as much as possible, knowledge can help prepare you for general facts and also bring hope. The less confusion about a subject the better but remember everyone is different, so never compare someone else's case to your own. No one can really tell what could happen all the time, sometimes it's simply a estimate. Just take one step at an time and treat any unwanted objects, one at an time.

[lacrosse123]

Such great advice to hear, I will do as you say and treat each step one by one. I can tell that the researching isn't great as some days I feel good from it and others I feel bad from the research/statistics. It's very inconsistent but I shouldn't push for information until I receive it properly. I'm a worrier and I overthink quite a bit, which doesn't help at all. Thank you very much for the replies. 

[iloveyoudearly7]

True, that's the nature of the internet - too many random statistics and they always range so differently. (Especially state to state or website to website). 

That's a good plan you have in place, just keep calm and wait for the facts from the doctors themselves. Also don't ever be afraid to change doctors at the esteemed facility, if you believe you could do better - no harm in getting second opinions.

If you ever wanna talk, I'm here - please do keep me updated.

[lacrosse123]

My mother had her diagnosis at her cancer institute today. As there's still a pandemic and health concerns only she could go in and we had to wait outside. They have reviewed her scans and xrays from her hospital she was at and her doctors don't believe it has spread anywhere else. Of course she will have her routine check ups, but in my head I had imagined they were going to do a large series of tests which doesn't seem to be the case/need to occur (yet).  As the cancerous tumor was on her heart and tumors on hearts are hard to completely remove due to surgeon time frame/time, full removal/clear margins are hard to achieve just by surgery. They decided that once she recovers more from her open heart surgery in about a month she will begin radiation, which doesn't sound too serious/terrible.

I'm struggling still believing this/letting my guard down, as I don't know if this is too good to be true, or maybe this cancer is just different entirely from what I read. We have been through quite a bit as others have in the last month with my mother's health. All I know is that her cancer rare, rare, rare. (Sarcoma = rare, Cardiac sarcoma = rare x2).

My mother hates spreading sadness and knows how much we've been through this past month with her health which she feels bad for as she was in a coma for the majority of it and wasn't mentally effected like we were, and although my mother has said several times after her appointment with her cancer treatment, that she is telling us absolutely everything from her diagnosis (as we weren't there to listen to it) and it's very hard for me to believe that her diagnosis was as good as it was...I just feel like it's too good to be true as the highlights overall were that the cancer hasn't spread, and my mom told us they didn't/couldn't give an estimated time and that they basically said "we don't even know how long we will live for, your cancer could come back, it could not, you could live to 100 for all we know". from what I read, it comes back so often, and people usually don't stay alive for longer than 6-12 months after diagnosis, in her case it just sounds like they removed the majority of it, and it's a waiting game, but it may or may not come back. If it does come back which no one can predict, it sounds extremely terrifying to me. I just feel like I personally don't have all the answers that I want and hoped for as we waited for this diagnosis for two weeks now as she's been healing, as selfish as I sound as the rest of my family is satisfied with her diagnosis. I know cancer is terrible, random, and can't be predicted. It definitely sounds like her doctors/team have a backup plan too if the radiation doesn't help remove the little cells that are left. I continue to read & read and keep finding from my research that this cancer is very aggressive and comes back, from the data that is shared online it seems like almost 65-70% of the time it comes back, which just sounds scary. I know this probably sounds wishy washy/not black and white and if you maybe have any advice personally I'd appreciate it. Overall, we all feel great about her diagnosis. She had a tumor that almost killed her and was removed, shes recovering very well, she's basically herself again, they mentioned she may have to have another operation last week but her diagnosis/cancer doctors basically said that isn't going to be needed and that targeted radiation should work.

Thank you to whomever takes the time to read this, and I greatly appreciate the replies I've received as they have helped tremendously throughout this experience. Another thing her doctor recommended is to stay off google, which I find nearly impossible as I don't have all my answers I feel like I need/want, but I suppose that's half of the fight with any cancer. 

[iloveyoudearly7]

Hey lacrosse123,

That sounds so surreal/unnerving and this happened in such a short time as well but I am so relieved that your mother is recovering
extremely well and that she is surrounded by loved ones, (plus a familiar environment tends to help with healing as well as it reduces stress). At least they caught and removed the mass from her heart before any more damage was done, this is a positive step so far and soon she will be going to a esteemed Boston facility as well. It seems everything is planned, organised and ready to be put into action as needed. One step at an step - never overload yourself with too many 'what ifs' because the funny thing about 'what ifs', they rarely come true in most cases. It's just the mind preparing itself for anything that might come it's way - no matter how silly or unrealistic it could be.

Sarcoma can have patterns but it's really not that predictable to be honest, sarcoma tends to travel around the body in the later stages but like I said everyone is different so I would only be guessing the pattern effect. If she does have another heart surgery, at least the offending cancer would be removed. As long as she has time to recover from the first operation then the second should be logically okay as well. Plus they doctor did say there are no red flags remember?

Unfortunately the cancer can travel up into the brain in some cases, please remember every case is different. Plus they can treat that with radiotherapy, that will help kill the little evil cells from coming. Usually if it's on the brain, you will see a change in behaviour. E.g. They get more angry at things that never use to bother them before, they tend to forget things, they might get a little paranoid, moods that can change fast, become to focus on one particular thing, no sense of balance (cannot walk in a straight line), might run into walls, headaches, cognitive problems, nausea and vomiting and etc. The cancer tends to kill the muscles as well in the late stages, where walking is not possible.

If your doctor thinks there is something there then I highly recommend you push for a scan as soon as possible, don't take no for answer if you can help it. It could be something else but still, try for the scan.

And I'd considered Google to be an double edge sword, yes it will give you information and statistics but there are far too many factors for any information that you read to be regarded the whole and only truth. E.g. genetics, different environments, exposure to an range of chemicals, age, what treatments are done, different countries, and etc. It's impossible to get an exact date or a accurate time. There are just far too many factors. Like you said before she very well could live for another 70 years, it's quite possible.

However if you wish to read then by all means, please do, especially if it gives you comfort but your doctor did suggest staying away from google for an reason - it can cause more damage than good sometimes. (Reading negative data over time can have a massive impact on one's hopes, faith and attitude towards the situation). I believe it's best just listening to your doctor and the information he has to offer instead. (Especially if the information is solely about your mother's case and no on else's). Don't overwhelm yourself with other people's cases or the forever changing statistics.

So far it seems to me that your mother is handling the cancer treatment well and any that pops up will be treated or removed as it's being handled that way anyhow.

Remember to look after yourself as well, enjoy a small hobbie that you like to do, like colouring, painting, reading or anything like that. You could even read a book to your mother or maybe watch some movies together in her bedroom. Or keep a dairy, write down your feelings or keep an schedule book for all her appointments, what treatments has been done or medicine she has been taking so you know what's been already done.

Please do keep us updated.