Hi ladies

I just want to wish you all a Happy and as Healthy a New Year as possible - bring on 2012.

Its good to drop in and see what others are up to - scan and more treatment (fingers crossed!) in January for me.

Best wishes

Sue x

Hello everybody, may I join you and introduce myself?  I opened a new thread on this subject the other day in the "introduce yourself" section, but I really wanted to get onto this site.  I  am 67 yo and live in Essex, UK and have recently been diagnosed as having tumours on both ovaries, plus some areas on the omentum and outer bowel.  However, my hospital MDT  wants to ascertain whether my ovaries are the primary site or secondary to breast ca I had 15 years ago before planning my treatment, so I've just had a biopsy and await results on 22nd Feb.  I found your site about a month ago and was both heartened by all your posts, and at the same time scared - not of the treatment particularly but the outcome.  Some days I feel that I won't get through this, other days I think "No, you won't get me, you (expletive deleted!)"

The last post on your site was 28th Dec, I have been checking, so I hope you are all getting along OK

Best wishes, Hazel. X

Hi John,

My sister succumbed to ovarian cancer on 29 Mar 12. During her critical stay at the hospital, I found out from her that she did not know that her oncologist team had stopped her cancer treatment. As a result, she was often frustrated after each consultation because the doctors kept telling her that her condition is normal - even when her abdomen had bloated to an extent where she could hardly walk. She underwent an abdominal tap on 13 Mar 12 and accordingly to her, the nurses administering the procedure could not withdraw any fluid because "jelly-like" fluid blocked the needle.After several failed attempts, the nurses applied a gauze to the stomach where the needle was inserted and told her to go home without any subsequent appointment to review. She continued to change the wet gauze at home by herself for about 4 days. On 18 Mar 12 - my sister's legs started swelling and she could hardly breathe. We brought her to the emergeny room in hospital where she was warded and passed away on 29 Mar 12. The following questions kept burning in my head as I struggled to accept her demise::

- Should the oncologist tell her patient about her condition before stopping the cancer treatment - so that the patient is aware and prepared for the cancer to take its due course?

- Related to the above question, should the oncologist have the "final conversation" with the patient? or is it procedural that the oncologist inform the patient's family to break the bad news?

- Are there medical protocols related to the the above procedure or they are just ethical issues to be managed betweeen the doctor and patient?

Dear samkevin,

Welcome to the forum, I am very sorry to hear of your recent loss and understand why you would want to raise some questions. Of course we are not experts here so may only be able to give you our opinions or personal experiences rather than the answers that you really want. I am guessing that you are from the USA, so it may also be possible that protocol differs a little from the UK.

To be honest, my wife Mary does not want to know too much detail of how bad her cancer is or her prognosis. She will just except the treatment prescribed and try to forget about it all and enjoy her life. So although I accompany her to consultations, I am limited to what questions I can ask because I know that the answers may be upsetting for her to hear at this stage. I feel that she is now in the "living with cancer" bracket as they could not cure it first time around and the cancer has spread. I know I will need to ask some questions at some point, but that will probably be done over the phone to her specialist oncology nurse.

So I am probably the wrong person to ask, but I am sure some of the ladies on here will give you their input. This may also help me to formulate an opinion because at the moment I haven't given it a lot of thought, so thank you for raising the questions.

I do hope we can help you in some way in coming to terms with the loss of your sister.

My thoughts and best wishes are with you at this sad time,

John

Hi Samkevin,

Firstly let me say I'm sorry to hear about how your sister died.  The circumstances must make it harder to bear.

The whole area of breaking bad news is a very difficult one.  Normally (in the UK at least) doctors try and establish how much a patient wants to know about their condition; things have moved on from the paternalistic view that patients are best kept in the dark.  So, if a patient makes it clear that they don't want to know the whole truth then they will not be told - but possibly relatives might have a clearer picture in that case, but that also depends on whether the patient is competent to understand the detail and make decisions about their treatment.  If a patient wants to know detail then they will be given a clearer picture.  However, many of us will slowly change our minds as the condition progresses, and if the medical team doesn't keep track of that then there are problems.

Telling a family member the bad news and then expecting them to pass it on to the patient is not necessarily a good idea - I speak from direct experience.  A doctor asked me to pass on the diagnosis (Stage 4 cancer) to my husband. I just refused, as I couldn't have answered any questions he had. This was not in the UK I hasten to add.

In your sister's case it sounds as if there had been some sort of breakdown in communication, either the Dr didn't check that your sister understood that active treatment of the cancer had ended, or your sister didn't hear/understand what was said.  I go to all my huband's appointments, and take notes, and we still sometimes end up with a different version of what was said: it's all too easy to misunderstand and to choose to hear what you want to hear.

Would it be possible for you to speak to anyone from your sister's medical team about the last weeks of her illness?  That might help put your mind at rest.

Expat

Hi Helen

Some of the ladies here have had weekly chemo which seemed to work well for them, I'm surprised they haven't altered the chemo as NICE guidelines to recommend changing if you get less than 6 months 'remission', on the other hand I suppose it makes sense to try weekly while adding the Avastin and keep the others for use later. Some seem to follow the guidelines while others do there own thing!

The 'prognosis' conversation sounds reasonably to me, I think your consultant has handled it well. 3 years and 3 lots of chemo later my body is not telling me I've had enough!

Take care

Jackie xxx

Hi John

I can't remember if you can take both anti sickness at the same time, they may work in different ways so I would suggest checking with the dr or nurse. Ondanstetron is known as the most powerful anti sickness med (if used to be exclusive for cancer patients because of the cost!) however like everything else take what works, so if you find the metclopromide works better ot a combo works better then sltick with it, its all trial and error i'm afraid!

So far the dex seems to be standard for all, the anti sickness seems to vary i get sent home with domperidone but then I've never had a problem with feeling sick so it hasn't needed to be changed! I think haze gets domperidone as well, so think Mary's ond and max are due to the problems she was having with sickness.

Hopefully she will feel better soon, though to be fair I think a long day out on saturday would have left any of us washed out the following day! I think thats one of the hardest things to accept, doing what we once could do without thinking now needs to have recovery time built in (diff makes you feel old )  you need to remember that chemo is accumalitive as well, so Mary will feel more and more tired and it can take several months after chemo ends before energy returns. Not saying you shouldn't get out and about, cos its brill that u do, just saying to expect a tired day after it!

Hope Mary has a good day today

Jackie xxx

Hi samkevin

So sorry to hear of your loss and especially the sad circumstances which have left you finding it difficult to come to terms with. The other have all given you some useful advice and the only thing I can think to add is the ethical side of it. Obviously we don't know your circumstances but information can be very difficult if you are not the next of kin. Hospital (in UK) are almost obsessive now with confidentiality, the patient gets told everything and with there permission others can be told. This does lead to the type of difficulties you seem to have experienced. At other times the next of kin is involved, it is then up to them what they pass on and again you have the old Chinese whispers getting in.

In direct response to your questions (my opinion only) 1) yes unless the patient has clearly indicated that do not want to know

2) doctor to patient preferably with relatives present for support 3) uk have protocols

I hope you manage to resolve these issues quickly so you can comes to terms with the loss of your sister and get to the point where you recover your good memories of her.

Wishing you the best

Jackie xx

Sorry for multi posting but memory playing up so had to do each individually!

Hi Jackie,

Thanks for your input re meds, like you say it's trial and error, maybe nothing will work and it just has to take it's course. You're right about the day out leaving her washed out. Mary felt nauseous all night and was completely exhausted today and ate nothing. She has her week off chemo next week so hopefully she'll have another run of feeling good before cycle 3 starts. She never felt this bad last time around with Carbo/Taxol so maybe it's the Gem that's dragging her down.

I was hoping to get her out to the Algarve for 2 or 3 nights mid April, but I think I will have to book flights the day before so we'll know if she feels well enough. Our planned family trip to Orlando in June is not looking good if she has to go the full 6 cycles of chemo, as you say the accumalative effect. I have found a company who will insure her provided she stops her treatment 2 weeks before we go, and they have a full medical questionaire completed by her onc, they have told me that the minimum premium would be £1000! So a lot to consider there. Mary developed neutropenic sepsis towards the end of her last chemo and I thought it was going to kill her, so there's no way I would take her to the USA without medical cover. The family have said they would not go unless we went too, because that was the whole point of the holiday - we all thought she was cured when we booked the flights!

Maybe tomorrow will be better, I hope everyone else is coping ok.

Best wishes,

John

x

edit: - PS, I meant to ask, has anyone tried self-acupressure for nausea? I was reading up about it this morning and it looks very interesting. If you Google "acupressure nausea" the most common pressure point seems to be on the back of the wrist. You can even buy travel sickness wristbands that work by pressing this pressure point (p6). Look at the reviews on amazon.

Message was edited by: JohnMillbrook

Hi Jackie,

Sorry to say the domperidone trick didn't work - I have been really bad since Sat morning, feeling and being sick, loads of bile.  Can't eat and more importantly, can't drink.  Am thinking of phoning chemo unit this morn to see if they think I should have IV fluids.  What do you reckon?

Hope you are still reasonably OK yourself?

Love Hazel xxx

Hello, SamKevin,

I am so sorry to hear about your sister.  My thoughts are with you and your family.

As John and Jackie have said, protocol will differ if you are in US, so I would advise that as well as letting us know how you get on you also try to find a similar chat site in the US where the info will be more suitable for you.  I'm pretty sure there will be some, I stumbled across one myself a few weeks ago.

Good luck, love Hazel x

Hi, John,

So sorry for Mary - at the moment I'm feeling the same, and it's b..... awful!  Hope we BOTH feel better soon!

Love Hazel xxx

Hi, John,

So sorry for Mary - at the moment I'm feeling the same, and it's b..... awful!  Hope we BOTH feel better soon!

Love Hazel xxx