lovely mil just diagnosed with ovarian cancer & secondary cancer too. Help please

[ernest]

well, title says pretty much all. She hasn't seen consultant yet? How long do you normally have to wait, anyone know? She went to see her GP & I think she suspected oc - dunno why specifically but she paid £500 for a private scan & was shocked to see it's already spread to liver, lymph nodes & somewhere else.

Absolutely cannot believe it. When we got the call I (dh answered) I knew it was serious, assumed his gran has taken ill, not his mum/ We were with her at Christmas & she seemed fine I feel guily thinking about all the running around she did for us, as usual.

Does anyone have any knowledge/experience of this? Is oc one of the ones with a good survival rate? I thought tho' that once the liver was involved it was bad news. Honest & candid replies please. I spent all night imagining her funeral so gutted

I'm scared to call 'cos I know I'll cry & that's the last thing she needs. We're so far away I feel helpless, not in UK. Dunno if she'd want the grandkids to visit (she adores them) or if it would just be a huge added burden?
Any suggestions on what to do? Any ideas for not crying. I'm more like Bree Van der Kamps mil than Bree unfortunately.

thanks, that's what her gp said too. you're exactly right & seem to know a lot. Must go and pack. must go and pack.

This is a difficult one, to talk to your DH about the seriousness of OC or wait for the appointment. I think he needs to know that the end could come fairly quickly. I know you won't know anything until further tests are done but I think he should be aware that he may not have much time left to spend his mother. If it was me then I would want to know. I think it would be worse having regrets later on.

Very difficult though, with your holiday coming up and everything. I wish you luck whichever way you deal with it.

bump - how are things ?

Thinking of you all Ernest - let us know how it's going.

Big hugs.

How is everything Ernest??? Still praying - Please update!! [[[hugs]]]]

bump - how are things ?

that's so sweet you asking. Well. She had the appt on the 13th & didn't learn anything. The doc was very nice & she came away feeling a lot happier than she went in just based on his lovely manner & reassurances. Since then they've taken blood tests & done an ultrasound & she was supposed to go back last Monday for the results, but they called her in last Friday for a biopsy & the results wouldn't've been ready in time for the Monday meeting, so cut cut this long story short, the big appointment, where hopefully we will learn SOMETHING, cos we still don't really know anything, is this morning. So fingers crossed & positive vibes direction Guys hospital please.

I have to say I've been shocked at how badly everyone's dealt with it, including her. She hasn't been to work, but at the same time hasn't really done anything else, so has pretty much spent the last 27 days sitting at home, often alone, driving herself mad with worry. It has not been nice. Kleenex shares will have done well in the last month.

Sending good vibes to Guys. Fingers crossed.

ok she has finally seen doc etc with test results. I'm confused.
She has been told that her ovaries, pancreas & liver are clear. That's good.

She has got primary cancer in her peritoneum. (this isabdominal lining underneath diagphram) They've said she will have 6 chemo sessions, 1 every three weeks. They've said that they will be able to treat it with the chemo & that they've caught it early.

I have done quick search on internet that says

• this type of cancer basically is the same as ovarian cancer, just not in ovaries.
• that the mortality rate for this type of cancer is 100%, average being 12-25 months
• that they can't cure it with chemo.

This is not what she's been told.

So, I guess we should believe the doctors rather then thw web? My concern is that they think it's really bad, but aren't telling her how bad. Is this me being totally irrational? I mean it's been 4 weeks now & they haven't done any actual treatment. And this is the "Rapid response unit". Sh'es going back on Wednesday for more tests & prep for the chemo eg taking weight & height. But the woman is 56 years old. She bloody well knows how much she weighs & how tall she is. I feel they're sort of dragging it all out ifswim. But then had absolutely no experience, so dunno if this is normal. Surely time is of the essence?

Has anyone else heard of/got any experience with this type of cancer? Seems strangley so far removed from the original diagnosis based on the ct scan

So sorry to hear this sad news.

Have you spoken to the doctor yourself? Or are you going on what your mil has told you about what the doc said? It might be that she can't really take it all on board, which is completely understandable.

I ask this because my mum was seriously ill last year and I only really understood what was going on with her diagnosis and treatment after I spoke to her doctor myself. Or if you can't manage to speak to her doctor, you might want to try and speak to someone at Cancer Bacup 0808 800 1234 or Macmillan 0808 800 2020.

thanks sparks, not even from her but sil reporting what she's said. I'm not in uk, so the distance & accessing info is difficult. Dh is MR optimist. sil is tearful & mil well, fragile. fil on verge of tears constantly it seems. 4 bloody weeks and nothings been done? Dare I ask about your experience with your mum and her treatment. I don't know what these cancer support people could say to me as I feel I only have a much too wooly picture of it all - and don't know if that's mil or doctors not giving, or being t=able to grasp full picture.

Hi again ernest
so sorry to hear how frustrating this is for you and how wooly all the information is. Unfortunately, this is a very familiar story to me. Before I was diagnosed, my fil had prostrate cancer and my grandmother had lung cancer, and I really identify with the frustrations you're expressing. During my own treatment, I have been amazed about how information is so difficult to come by and how I have to know the right questions to ask - lots of information I've wanted hasn't been routinely offered to me. It's difficult to do that when coming to terms with the diagnosis, making decisions about treatment and comprehending the prognosis.
My experience (both as patient and as a patient's relative) is that these things do take time but that sometimes those times can be shortened if the patient rings up and tries to bring appointments forward with the oncologist's secretary. I think lab tests can't be hurried up, but I certainly got an appointment with my oncologist brought forward by being noisy. I don't know whether that had any effect on the timing of my starting chemo, but it certainly helped emotionally because I wasn't waiting, imagining that the hospital had forgotten about me.
Regarding the information you have heard from your sil in comparison to the stuff on the web: it could be that your mil has chosen not to ask the really hard questions because she's not ready to hear the answers, or it could be that your mil is holding back on giving your sil the full facts, or it could be that your sil has mistakenly given you wrong information about your mil's diagnosis. I think you need to speak to your mil direct - or your husband does. I think she needs to understand that while you really appreciate how big a deal this is for her and her husband, it is also affecting you guys and you need to have a clear idea about her illness so that you can come to terms with it too. The doctors will give the information to your mil if she asks for it, but they won't necessarily offer it routinely. My surgeon, for example, was very reluctant to give me my prognosis in start percentage points because he didn't think it would help with me coming to terms with my illness, but he did say I was in a 'poor prognosis' category. Later, when I'd got my head around it a bit, I did some internet research and got the stats - which turned out to be about 40% ten year survival after chemo, and I've got herceptin and hormone treatment on top of that, so not as bad as I'd imagined 'poor prognosis' meant!
Keep posting.....

I agree with lalaa, it would be a good idea to speak to your mil directly. It's a lot to come to terms with for everyone.

My mum didn't have cancer, she had septicaemia. She also has a rare neurological disease. With the septicaemia, she was taken to hospital and treated with IV antibiotics. When I spoke to her she said they weren't sure which antibiotic to give her and were waiting for the consultant to confirm the diagnosis. When I finally managed to speak to the registrar, he said they had diagnosed her on the first day. He explained that she would be on IV antibiotics for a little while longer and then be discharged home to continue with oral antibiotics.

My mum tries to put a brave face on, it's her way of coping. Not that she doesn't understand how serious it is, but somehow expressing all that is too difficult for her.

I don't know what the helpline people might be able to tell you, but it would be more reliable than doing a web search.

hi. spoke to mil last night. she sounded very positive & calm & sort of ready to get stuck in. She says she was told by the doctors that the "chemo will work". I feal uneasy/surprised that they would make such b&w 100% reassurances. Wish I could feel as confident. still confused that the web says taotally the opposite, that chemo cannot treat this and there is a 100% mortality rate...
Anyway, she will meet the oncology docs tomorrow & should start chemo within 2 weeks (another 2 weeks... that makes 6 from initial diagnosis... 6 weeks - where is the sence or urgency???)

Sorry you guys have had such a tough time. lalaa i'm shocked & sorry to hear your diagnosis. What type of cancer have you got? How was the chemo? I don't know anything about it. If you don't feel like discussing further I understand. Wishing you all the best xxx

Hi Ernest,

I recently read a book written by Helen Rollason a few months before you she - it documented her last 2 years - sonce she had been diagnosed with cancer.

You might find it useful to read (or your MIL) - she was very inspiring in her approach and very honest about the good and the bad times.

Hi again ernest
I've got breast cancer - diagnosed at age 33, would you believe it! Chemo is tough. It's emotionally demanding because it's relentless (mine's given once every three weeks, and when you've got to have 6 - 8 treatments, that's basically almost 6 months). It's hard on partners and family members too because they, in my experience anyway, have to care for the patient in the days after chemo, and that puts all sorts of additional pressure on. Difficult for me too because I want to help, and I want things done a particular way but I'm not up to it. Different cancers have different regimes, however, because they use different drugs. Some are given orally on a daily basis, or weekly, or every three weeks like me, intravenously. Physically, and mainly this was do to with the immediate side effects such as nausea, I found the first couple difficult, the third one easy, the fourth difficult and the fifth almost impossible. I've got my last one on Tuesday and am having a different type of anti-sickness drug this time which I'm hoping will make it bearable. Even if it isn't, it's the last one, and I'm hanging on to that! Again, the drugs your mil are likely to be different to the ones I have and I know that the nausea thing with my drugs is particularly bad. Everybody reacts differently to the drugs, and they will take her through all the different possible side effects, so the only way you will really know for sure how it is for her is when she starts.
If you want any more info, just shout. Happy to talk.

thanks lalaa, God you sound so brave. mil will also have the chemo IV every 3 weeks for 6 sessions. She sounds quite upbeat, but was told yesterday that the chemo wouldn't cure it, nor can they operate, so it's a question of, I can't remember the phrase they used, but managing the symptoms. No one has mentioned time scales.

So you were diagnosed only a few months ago? I'm so sorry. i can't imagine what a shock that must be, so young like you said. Is it tough for you to talk about? I will be thinkin of you xxx

not too tough for me to talk about now, but it was for a couple of months after i was diagnosed in september. just such a shock.
i'm sorry to hear that the chemo won't be able to cure your mil. i suppose that helps clear up the confusion you had about the information she was giving you and the info you'd found on the web. but very sad. perhaps they can't give a timescale at the moment because they don't know how aggressive it is. there's probably a blood test they can do to measure the amount of cancer in her system, and they'll be able to see how far that goes down in response to the chemo. again, she'll probably have to ask about that - not sure that they would necessarily offer that information. and she may not want to ask, of course.
it must be hard trying to deal with this from so far away. will you be able to visit her in the good times? if she's on three weekly chemo, she may have a similar pattern to me: first week is rubbish due to unbelievable nausea, second week is OK but immune system is totally depleted so lots of staying away from crowded places and ill people, third week getting better all the time. if you can fit a visit into the third week, you'll probably all have a much better time.
thinking of you.