Secondary Leiomyosarcoma in the peritoneum

Hi

I'm sorry to hear that a secondary tumour has appeared and that your planned operation is no longer possible.

Although I'm not a member of this group I noticed that your post hadn't had any replies and didn't want you to think that nobody had read it. 

If you feel that talking to someone would help please give the Macmillan Support Line a call on 0808 808 0000. It's free to call and is available daily from 8am to 8pm. It is also available for your husband to use as well if he wants to talk.

x

src60

Thank you. At present things all seem very dark, I guess my problem is not very common and perhaps there are no survivors around to talk to at present. Presently waiting for an appointment to see my oncologist, it is the waiting period that is so difficult . Everything I read online is not good and perhaps I may not have much time left. I am in limbo and find myself suddenly silently crying, then telling myself stop it and get on with life whilst you can. All I have is vague hope and it is hurting my wonderful husband as much as I.

Thank you again.

Hugs JDBUNNY

I can understand how difficult things must seem at the moment. Does your hospital have an emotional support services where you could go and talk to trained staff? Failing that, I've heard that the Macmillan Support Line is excellent. I've used it myself when I needed medical information.

I would advise against using the internet to search for information on leimyosarcoma as it's quite often way out of date. Try to stick to reliable sites such as this one or Cancer Research UK. For example, I've found this information here which talks about the use of chemotherapy for leimyosarcomas which have spread. You may also have the chance to take part in a clinical trial. 

I used the search facility within this group to look for other people with this type of cancer and came across a few names. You might like to do this too and see if any of the posts are relevant for you. I'm also going to tag my fellow Community Champion src60 into my reply to you as his wife has had chemotherapy treatment for leimyosarcoma and he might  be able to share her experience of this with you.

xx

Thank you, your replies are both thoughtful and helpful. Regarding the internet, you are correct and it is not helping me. Learning about the chemo from src60 is also helpful for when I eventually see my oncologist.

Thank you again, I feel a little better now.

JDBUNNY

, I well remember when the oncologist helpfully told my wife her only option was chemotherapy but the success rate was not great - helpful or what.

Something to hang on too is that they would not do chemotherapy if they thought the chances were too low - emotionally because they are doctors who want the best for their patients - practically because the drugs are a tad on the expensive side [thank heavens for the NHS].

Janice's cancer is now so stable that she only has to go to see the oncologist every nine months - so wether at the end of the day it will be the cancer or the proverbial bus that gets her is very much up in the air - though with some of the driving around here bets are on some kind of road traffic accident.

Yesterday is history, tomorrow is a mystery, today is a gift - that is why they call it the present.

<<hugs>>

Steve

Thanks Steve,

Yes when I saw the surgeon his response was somewhat negative leaving me and my husband feeling pretty desperate.

Your response today has a reason to have hope, so thank you from the bottom of my heart.

I am so pleased your wife is now in a better place with regard to the cancer and long may that continue.

Big thanks and hugs

JDBunny

Hello JDBunny

This is my first post, so please bear with me if I get a bit confused by the process.

I too am with the wonderful Royal Marsden. I was diagnosed with uterine leiomyosarcoma in Feb of 2018, after a hysterectomy which removed all visible signs of cancer. So I am now on three monthly surveillance.

I am so sorry your recent news has been so concerning.

You may already have received support from the rehabilitation department at RMS, but in case not, I wanted to say how helpful I have found the help and support I have received from them for my difficulties in coming to terms with this rare form of cancer.

I saw a wonderful occupational therapist for a number of weeks and am still seeing a supportive, kind, knowledgeable and understanding clinical psychologist. I am finding it so helpful.

I have forgotten my forum name, but think it was Newday.l

 Hello and thank you for your reply.

I was initially with RMS but living in West Dorset, the travel became too wearisome so now referred back to Poole Oncology, they will however often refer back to RMS on request.

Yes it is a very nasty shock being told not only do you have cancer but also a very rare aggressive one. I am so pleased you are receiving such psychological support and hope most sincerely that you continue to progress in the most positive way.

I have not sought external help, but my oncologist is great a explaining and answering any questions plus I have an oncology support nurse available if  I need her.  Unfortunately I am now basically terminal so on palliative care as the leiomyosarcoma has spread to the peritoneal cavity in my abdomen, presently inoperable. My lovely oncologist is now going to try hormone treatment, not to kill but try and contain the tumour. It is a bit of an experiment, but who knows?  My decision has been to get as much out of life whilst I can with hopefully a 12 month survival. Chemo is not known to have much success so at present, I would rather not waste valuable time being too incapacitated to do anything much. Who knows, there is always hope. My husband and family are taking this hard as are my friends, but I have asked them not to allow the so called elephant in the room and just see  me as the same person I always was and still am. They have no need to feel difficult about saying anything, I am not looking for sympathy only their love and friendship..

Anyway enough about me, you now are important so if they were successful you may well never have to face re occurrence.

Thinking of you and supportive hugs

JDBunny.

Thanks for the quick response JDBunny

I am very pleased to hear you are getting the support you need from your current hospital.. 

I can understand the travelling up from West Dorset being too wearisome. I am only 20 miles from the RMH and find it so. I had no idea anxiety could be so debilitating, but thankfully my Consultant suggested this could be the cause of my ongoing fatigue problems, hence me asking for psychological support.

I also had no idea there were still cancers to which chemo and radiotherapy didn't respond, until I got this type. All the positive news about the treatment of the more common cancers gave me a false idea.

I think it was you who said in a post about the difficulty of the frequent scans and feeling unable to plan (apologies if it wasn't).That resonated so much for me. I have my next MRI plus chest x-ray next week and having felt as you had done, I am determined not to put life on hold and so am determined to carry on as usual as much as possible.

It wasn't until I had cancer that I came to understand why people don't have any treatment possible, but quality of life is so important. It must be difficult to make such decisions., but I imagine the medical professionals can help.

I keep being told that ULMS is a very unpredictable form of cancer, but then what cancer is predictable, in an individual case. I guess that leaves hope more possible. The trouble is I have never come across anyone online who has remained free from recurrence. But even as I type this I think I could be the one person. I do plan for the worst and hope for the best and have great pleasure and treasure more moments in my life that I have previously.

I didn't have any adjuvant treatment and I found that friends and family and even my GP thought this was good, but I didn't. I wanted to have treatment that might stop the cancer returning.  I do understand why I didn't receive any treatment, but was shocked to learn this,

I am hoping that whatever the future holds I never lose my sense of humour , well not for long anyway. I had been severely depressed pre cancer and found that the loss of being able to laugh at anything unbearable.

Oh yes, sympathy is not something I ever want; kindness and compassion, always though, as before the diagnosis.

I am 65 and have avoided facing up to my mortality previously, but now I am finding comfort in doing a little forward planning e.g. investigating the local hospice, sorting out my finances. If this cancer doesn't get me something will!

I hope that you find peace, happiness and enjoyment in whatever time you have left. 

I would be happy to hear how things are going for you; you sound a lovely caring person.

Love and hugs Newday.

HI JDBUNNY,

Just wondering how you are getting on.  I am interested in what treatment that you have been having for peritoneal metastases.  I have Undifferentiated Uterine Sarcoma and have 3 areas of peritoneal metastases in the pelvic region.  At the moment I am being sen at The Royal Marsden Hospital in Chelsea, although I come from Plymouth - quite a journey.  I am on my second cycle of Doxorubicin and go for my third treatment next week and also a CT Scan to see if the chemo is working.  

My secondaries were found on a CT Scan back in April of this year, I had my primary surgery (TAH-BSO) in September 2018.  I have never had radiotherapy.  

I see the chemo as a way perhaps of prolonging my life and buying some time, however, the side effects have been severe lowering my quality of life.  If there is shrinkage, I may be able to go onto a clinical trial evaluating the role of maintenance therapy with cabozantinib in high grade undifferentiated uterine sarcoma (HGUS).  You never know, it might work.   I fully understand about that "Dark Place".  Sometimes I go there but I try and get out quickly.  My husband too is finding things very difficult but the more up front I am about it, the more he is able to cope. 

At the moment I am trying to sort my finances out as I seem to have several savings accounts, one with just £1.40 in it, and pension plans.  I am trying to move everything into one place where it is easily accessed.  I think that by doing this, my husband realises that I am preparing for the worst and that I am trying to make things easier for him to sort out after.  That sort of brings it home to him.  It helped no end to go through all of it and sort things out.

So, what I am saying is not "Be Positive" (how I hate it when people say that), more, be realistic and do not try and cope on your own.  There is plenty of support out there, take what is offered.  I have put down for counselling and I hope that my husband will come with me - we need to talk but somehow it can be the one thing that we do not talk about.

Will be thinking of you.

Sue