Metastatic endometrial carcinosarcoma - not for treatment

[moorlands]

Hi all,

I'm brand new here, so a warm "hello". Just looking for some thoughts and experiences really - there is so much conflicting information online!

My mum was treated for endometrial carcinosarcoma 4 years ago (chemo and brachytherapy). She was discharged earlier this year and given the "all clear". Over the last few months, she's just appeared exhausted all of the time, the colour has literally drained from her eyes. Long story short, after an accident and suspected broken bone, they have discovered numerous mets (carcinosarcoma) in both lungs, shoulder, rib and spine, with lymph node involvement.

We're all just a bit stunned. My sister and I are health professionals and went to the appointment with mum to see her consultant - we felt confident that we would leave with answers, but that's not been the case.

My mum isn't being offered any treatment, other than one targeted radiotherapy for a specific area of pain in her arm. I keep reading forum posts and journal articles about successful responses to chemotherapy in Stage IV uterine cancers, and i'm starting to wonder if we should be pushing for this? The consultant explained that she felt the side effects would outweigh any potential benefit, and maybe this is the case. I just don't feel OK about simply accepting that. She's only 65.

We haven't been given any information about the histology report, about any genetic factors - we should have asked but just didn't think in the moment.

Mum also isn't being seen back at clinic until after Christmas. The consultant was vague about prognosis - "typically less than a year". It all just feels a bit... lacking. My mum is disabled already, she has diabetes and limited mobility (currently WHO performance status 3), but a few weeks ago she was getting out and about. I just feel they've made a judgement about how they THINK she would respond, without really exploring the potential. She coped really well with her previous chemo.

Am I just being naive? I feel they're either giving up too early, or not explaining the extent of it fully.

Any thoughts would be appreciated - even if it's to say I need to accept what we've been told.

K

[WorriedHusband]

I would go for a second opinion.

It seems the fact that there are multiple bone involvements complicates treatment options.

Please see the following research where they address ‘For patients with bone metastasis, prediction of their remaining weeks or months might be important with regard to treatment decisions and quality of life.’

academic.oup.com/jjco/artic...

Good luck

[moorlands in reply to WorriedHusband]

Hi, and thank you for your reply. I had a read at that article - it does emphasise the complications for my mum (she falls into the categories with the highest hazard ratings). It is helpful to see the evidence when trying to make sense of it all.

[Lindaura]

Dear K,

This just seems unforgivable.

If you read the post below, entitled, Goodbye to my Mum, you will read about a lovely lady, who had cancer for the first time at 79, fought it off and had a good five years before it came back.

65 is way to young to get written off.

You do need a lot more information to explore real options.

There is also a post not too far down in this forum about doctors in England to get referrals to, for second opinions and clinical trials.

Where are you located?

That can make a real difference in your care.

You have to fight for everything in this situation. So good on you to pick up your sword.

Let us know where you are located and perhaps others can suggest a cancer centre that will not be so ageist.

All the best,

Laura

[Lindaura in reply to Lindaura]

This Cancer site shows that Chemotherapy is the way to go.

You have to skip ahead to the Stage 4 section, where the cancer had spread to lung and bone and lymph nodes.

google.co.uk/amp/s/amp.canc...

Please go for that second opinion.

Hugs,

Laura

[Lyndy]

You and your mum have nothing to lose by getting a second opinion. It does rather sound as if they have decided for her. xx

[Caleda4]

I don't come on here often,but notice that you said that your mum had endometrial cancer. This is what I had, which is 4 years ago now,& after a hysterectomy it was followed up by chemo carbo/taxol and brachytherapy. I was diagnosed with stage 2 grade 3 serous which was also found in one fallopian tube. I had my first annual checkup in September & things still seem to be ok thankfully. My Oncologist said to me at this meeting should I think that there is anything that is not normal for me,then to call her secretary and the Onc. would see me urgently & set up a treatment plan. Here is the punchline I will be 75 in January. So like others have advised I would definitely get a second opinion.

I hope that things work out for your mum. Take care. Caleda xx

[moorlands in reply to Caleda4]

Thank you for your reply, and i'm so glad to hear you're doing well. We're seeing the Doctor at her radiotherapy session on Thursday and i'm going in armed with a lot of questions!

[lesleysage]

Hello K, how about talking with Anna, the Support manager at Ovacome on their freephone number 0800 008 7054?

'Yes' 65 is far too young to be as 'past help'. My first diagnosis was 65 with stage 3c but never once met anything other than the very best of NHS, so it is incredibly disappointing to hear of this. I'd certainly talk to Anna and listen to her guidance on second opinion etc.

Warmest wishes, Lesley

[Madmolly]

I would certainly push for more explanations even second opinion s

There are so many different trials out there just now that are worth looking into. I am saddened to hear your have had this response. I am 72 on trials for stage 1V ovarian cancer and every step is explained to me and I am encouraged to ask questions. Push for it your mother deserves better. Best of luck let me know how it goes

[Katiebairdie]

I agree with the others, definitely ask for a second opinion, have you got another hospital within easy reach that you can go to?

Good luck

[moorlands in reply to Katiebairdie]

There is only one hospital which provides Oncology care in my city, however in the area outwith, there is another cancer centre. I do have contacts in that hospital so am going to find out.

[Btte]

I too think you should go for 2nd opinion, I was diagnosed stage 3 C carcinoma sarcoma, July 2012. I am now stage 4 as mets. To the lungs. I will be 76 in Jan. Love & hugs to you both Bridie

[moorlands in reply to Btte]

I'm sorry to hear it has spread Bridie - I hope you're keeping well. Would it be OK to ask what treatment you're being offered now? As this is similar to where my mum is (with the additional of spread to bones and lymph nodes).

[bamboo89]

If your mum would like more treatment, then getting a second opinion is likely to be useful, but otherwise, assuming you are in the UK, get in touch with the Macmillan (CNS) nurse at the hospital and ask for pathology/histology reports - she should be able to get copies for you. Also enquire as to whether your mother's cancer is hormone sensitive or not - they should be able to get that information too,, and if they can't, either ask them to find out or contact the Oncologist's secretary and ask the question.

It's been my experience that histology reports are not routinely accessible to patients - I had to ask for those as well as information on hormone sensitivity, so unless you ask, they don't seem to give out that information. The hospital you're at should have tested for genetic predisposition, but perhaps they haven't - again, ask the Macmillan nurse to get that information for you. Those nurses are the interface between you and the hospital, and they are a mine of information; if they don't have the information you want, ask them how to proceed to get it.

It may be that your mother's general health is too poor to tolerate any further chemotherapy or other drugs, but if she is strongly motivated to seek more treatment, then by all means, push as hard as you can by every means possible to see what might be available. How she feels about what's happening is actually the most critical factor - it may be that she doesn't want more treatment other than for palliative reasons - some people do make that choice, which can be very hard for relatives and loved ones to accept.

Good luck

Miriam

[moorlands in reply to bamboo89]

That's been really helpful Miriam, thank you. I've been wondering about the role of hormones and genes, so will definitely be asking these questions. I'm surprised that my mum had 2 daughters with her at the appointment, and they didn't discuss these factors.

Before the appointment, my mum had been quite motivated to go through chemo again - she coped really, really well with it last time. We mentioned this fact to the Consultant, but she replied that this was 4 years ago. Her performance status was slightly better 4 years ago, but not by much. We're seeing the doctor again when she goes for radiotherapy to her arm this week, and i'll be taking all these questions.

Thank you.

[bamboo89 in reply to moorlands]

I'm not surprised they didn't discuss 'these factors' voluntarily - my experience of getting information out of oncology felt not unlike using a virtual hammer and chisel, frankly. And of course, you don't always know what to ask about, not being fully versed in oncology as a patient. That's where I found this site very, very useful... it threw up questions I could ask. Even so, I clearly remember the CNS telling me I was a 'rather difficult' patient because 'you ask the questions and say the things no-one else does'. She even said I was 'the only' patient who'd asked for her histology report, which I don't believe for a second. Luckily, I was in a reasonable mood, and my urge to read her the riot act (euphemism for wanting to sling something at her) was easily overcome by taking a slow, deep breath or two. They did eventually give me information on The Care Exchange, or Patients Know Best, so I could sign up for that online, I suspect just to shut me up, but although I do get some information on that, its patchy - I often find the oncologist has blood results I've never seen, and I get blood results she's never seen. so its not entirely useful. And you can't ask it 'difficult' questions either...

Last thing to say is this - don't forget the universal rule, which is, the squeaky wheel gets the oil, so be proactive and insistent if your mum's up for more treatment, as well as getting your mum to make it very clear that she is wanting it, either with this oncologist or elsewhere, because sometimes, families are seen as wanting something for the patient which the patient does not.

Miriam

[Amerthist]

Dear k. I was diagnosed with carsinosarcoma stage 3c two years ago when I was 77. I had carbo/taxol, the cancer responded really well shrinking a considerable ammount. Not at any time was it thought that it might be to much for me.

I agree with what others have said you should ask for a second opinion,you also need to push for an earlier appointment. I do hope things work out well for your mum.

Best wishes

Anne

[Tesla_7US]

Absolutely get a second opinion ASAP! My dear friend was diagnosed with stage 4 inoperable HGSE OC and told she had "about 6 months". She got a second opinion and lived 12 more years.

[moorlands]

Thank you for all your replies - pretty consistent views that a 2nd opinion is worthwhile, so will speak to my mum about this. She was flattened with the news last week, but has been back to herself this weekend. I just don't want to let her go without a fight, but of course it's up to mum. Lots of questions to take with us to her radio appointment this week - thank you all again.