February 2017
Ok so after a number of appts, scans and tests I now know what I have and have a treatment plan. The sarcoma in my thigh is leiomyosarcoma. For this they are going to hit me with 3 days of chemo and then ten days of radiation with two hits of radiation a day (a six hour break between the two hits). After a six week break they will then go in and cut out the lump and remove my femoral nerve...Have freaked out a bit as my lump has increased to about 7cms and when I google the prognois for leiomyosarcoma it's not that great. The pet scan also picked up an 8mm mass in my pancreas as well. The Doctors are looking at this and are referring this to another Doctor. At this stage the opinion is the lump is to small for a bio and hasn't grown over the months - apparently it showed up on other earlier scans but was missed - so they may just go in and cut it out then do the pathology on it I lost my hubby to cancer last year and we have kids so I am all over the shop emotionally. I have though just finalised my will and ensured if I am gone within 5 years ( which may well happen ) the kids are 100% protected and no-one can rip them off. I created a watertight trust which ensure adequate access for costs of raising the kids and that's it. The Trustees even need to provide quarterly reports to the kids on what transactions have occurred. To prep the kids for all of this I have increased pocket money and pushed some expenses back to them to pay for. Each week they now sit down and allocate money for: all their hair products, underwear, deodorant, hair cuts etc. have gone right back to basics with this with them putting the money they budget for each into envelopes so it's a physical action they do each week. Once they get to 14 they can transition to back accounts. You know it's funny... I am terrified but not for myself it's for my kids. I am just worried about how this will affect them and minimising any effects. People don't seem to understand this and think that I am worried about my treatment. They don't seem to get that I would rather they offer to help more with the kids then offer to take me to the appts etc. I can get myself there, I would rather have them offer to take the kids out for the day ................. maybe it's a mother thing.
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December 2016
You poor thing. Just take each minute, hour and day at a time. My thoughts and prayers are with you...
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December 2016
Hi everyone I have just been advised a biopsy on a lump in my leg has found the contents were consistent with Rhabdomyosarcoma. From what I can find and what my doctor has told me this is extremely rare in Chrildren and even more rare in Adults. From what I have read though it is very aggressive. Questions I have are: Could the biopsy be wrong? The results did not state it was conclusive, it just said one sample out of 4 was consistent with Rhabdomyosarcoma. Does consistent mean it is Rhabdomyosarcoma? I'm being booked in now to see a Surgeon to have the lump removed, but would really like to know so that I can prepare .....
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October 2016
Thankyou for your good wishes. Am waiting for the results of a CT and biopsy. They took samples from 3 sections of the mass.
At least I know why the pain is there now. The mass is wrapped around a branch of the main artery in my thigh.....
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October 2016
Thanks. Am waiting for the results of a CT and biopsy. They took samples from 3 sections of the mass.
At least I know why the pain is there now. The mass is wrapped around a branch of the main artery in my thigh.....
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October 2016
Thanks. Am waiting for the results of a CT and biopsy. They took samples from 3 sections of the mass.
At least I know why the pain is there now. The mass is wrapped around a branch of the main artery in my thigh.....
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October 2016
Hi everyone
I have used this forum previously when caring my my Husband. I have just come from picking up an ultrasound result and am freaking out. The report states there is "an irregular mixed echogenic partially vascular mass" in my groin area. I've been experiencing shooting pains in this area for the past couple of weeks. At first I thought I had hurt my muscle lifting my husband but now it looks like this is not the case. Can anyone help me in understanding more about what the report is saying?
I am really freaking out and can't get in to see my doctor for about a week. The mass isn't small either it measures 4.3cm in length.... help!!!
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June 2016
Hi
can anyone tell me what the costs are for a Pallative Care Nurse - one booked through an Agency that is....indicative is fine, I'm just after a ballpark $$ so that i can see if we can afford it...
Hubby has requested to remain at home for as long as possible. He hates the thought of going into a hospice. With kids and trying to juggle their needs with his this really is the best option for all of us and allows the kids to have a more "normal" interaction with him instead of visiting him and having to say goodbye all the time. The issue I think I will have though is the costs...
We do have the community nurse now coming to the house for an hour a fortnight but I am going to need someone here with him during the day as I need to work a couple of days a week... Would really appreciate any feedback/guidance on this as I am struggling to work it out. I have googled and found a few sites ... I hate just going on a web site though, would rather I have some feedback to gauge if the Coy is reputable with good staff
it's quite overwhelming at the moment!....
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