New to the community?

Concerned37

Sister recently diagnosed

Hi, I've never joined one of these chat forums before but my sister has just been diagnosed with bowel cancer which has spread to her liver and lungs. All her recent bowel tests came back negative - she went for the test given out when you're 55, 18 months ago, and was told all looked very good. She's only got to this diagnosis because of a cough that wouldn't go away. They then found multiple lesions on her liver and found she had secondary cancer on her liver and lungs. There has been no tumours found in her bowel/colon but the biopsy on her liver came back as bowel cancer being the primary cancer. She has had to fight to get seen by the consultant which she has managed to get an appointment for tomorrow morning. If she hadn't been taken into hospital a week or so ago because she was struggling to breathe one night she would still be waiting to find out what was wrong with her. It all sounds so serious and scary - I was wondering what kind of treatment she will be offered. Thank you

Concerned37

Thank you so much for your reply. No she first had breathing problems at the beginning of the year which she was told it was probably a panic attack. Then the persistent cough appeared in September. She then had some tests done and she was then told she had multiple lesions on her liver and it was only because she was coughing and struggling to breathe one night and two of her daughters were there that they took her to hospital. The hospital struggled to find where the primary cancer was and it was only the results of the biopsy of her liver that they said it was bowel cancer. It was such a shock because she is so careful with her diet, never smoked and doesn't drink and at her bowel check they said everything was crystal clear and perfect.
She still has the persistent cough - she was given steroids at the hospital but they had no effect at all. She can hardly get a couple of words out without coughing. Now she has pain in her liver and isn't sleeping so she has been back to her GP who has given her something to ease the pain.
We are thinking she'll go down the chemo route - we'll find out tomorrow. Not sure what the consultant is, it's the same one she saw at the hospital - I'll check on that one.
How soon do they normally start treatment once they've decided what to do?
Thank you so much for your kind words.
:x::x:

Gypsy

Hi @Concerned37, I'm so sorry, that is awful for her. I think that they will assess her and provided they think that she is well enough for the treatment, they will crack on with it asap- but again, a non-medically qualified, patient opinion. I wonder if it is an oncology consultant that she is being referred to- just a thought. Your sister can ask at the GP for referral to MacMillan nurses and again, they are incredibly good and supportive and will advise and find things out etc. There is support to be had. Another good source is Maggies- do you have a Maggies anywhere near you? They are for all the emotional and psychological aspects of cancer but offer much more. You can just walk into a centre without an appointment and it is a lovely place to go. :x::x::x::x::x:

Lizalou

I'm so sorry for you both, too. What an awful way to eventually come to a diagnosis. Hopefully you will find out more tomorrow, But as @Gypsy says, she should have a specialist nurse who can listen and explain and coordinate, although you might need to ask/insist.

But the main thing is for her to feel more comfortable, so (assuming she is at home at the moment) don't be afraid to ask for more medical help.

Sending hugs for both of you :x::x:

Baxter2

Hi @Concerned37 and welcome to the forum from me too.

I am so sorry to learn of your lovely sisters diagnosis and the length of time it's taken. Sadly, that kind of story is not that unusual. It must be a huge shock for her and all the family in coming to terms with all of this.

How is your sister? Do you think she may like to join the forum since it can be pretty reassuring to speak with others who absolutely get it! There's a wealth of knowledge and experience as well as friendship and support from this community.

I'm guessing here but I think there may have been an MDT meeting (multidisciplinary team) where the various professionals get their clever heads together and consider each case and formulate a treatment plan based on the results of scans and investigations carried out. I think it's important that your sister has someone with her to listen and take notes if required since it's often difficult to hear and process what's being said. Another suggestion is to write down all her questions and make sure you get the answers you need. There will be scope for calling the specialist nurse afterwards to get clarification but often more difficult to get access to the doctor as easily. Is the appointment with an Oncologist or a surgeon do you know? You or she may find the publications available on the BCUK site helpful to read before the appointment too. As has already been suggested, Maggies can be very helpful as can Macmillan.

Please let us know how things go if you can? It would be lovely to have your sister join too if she would like to?

Lots of love

Karen :x::x::x::x::x::x:

Lirio345

Good morning @Concerned37, I just wanted to welcome you to the forum as well, but of course I am sorry that you are here. This is a really difficult part of the process - waiting to find out the plan, but bizarrely most people feel better once the proposed treatment starts.

Please take very good care and stay in touch, Kim :x::x:

justhope

Good morning @Concerned37 and welcome to the forum, I'm sure you would rather not belong to, I think most of us felt the same, but there is a wealth of support and knowledge and experience on here that I have found most useful since I joined, and such a willingness to support and share that knowledge. As others have said once you have a plan things will start to feel better, I was told that, and you know that it was exactly right.
Best wishes and stay in touch :x:

Concerned37

Thank you all for your responses - means such a lot. As you said, this is not something I'd ever have thought I would be doing or even talking about. My sister has an appointment today - not sure exactly who it is with, I think the consultant she saw at the hospital when she was admitted, but two of my nieces are going with her - one to write notes and the other to ask questions. We are all still in shock to be honest that she has this but hopefully after today we should all know more of what we are dealing with what the next course of action is. I'll mention this site to her, she might find it helpful to be in contact with people who are going through the same thing as she is. We can only imagine how she feels about it all and it would be good for her to talk to others about it as I know she worries more about us all more, especially her 3 beautiful girls.
I don't know any of your stories but thank you all for taking the time to share your thoughts and support. I'll keep you all posted. I hope you all have a good day :x::x::x::x::x:

Lirio345

Please stay in touch @Concerned37 and let us know how your sister got on today when you are able. If and when you want to read about someone’s story you can just click on their username and in most cases it will be revealed.

Take very good care, Kim :x::x:

Concerned37

I've just spoken to my niece who was with her at the appointment today. They saw a consultant who specialises in bowel cancer which is good. She has a pre-treatment meeting next Wednesday which I am going to with her and she starts her treatment on the Thursday. She is having chemo intravenously and also by tablet. She'll have two weeks treatment, a week off and then another week and they'll see how it's gone. She was shown a picture of her liver and it is covered in dark spots so she can't have surgery to remove anything there. She's been given some steroids to try and help with her cough, hopefully they'll work this time because I know that is getting her down. She has become very weak all of a sudden - which is understandable given the circumstances.
I mentioned this site to her and how lovely you all are so hopefully she'll join so she can get some extra support.
Thank you all once again, I'll keep you posted. Have a lovely weekend
:x::x::x::x::x:

jj

@Concerned37 a warm welcome to this forum. Sad to hear about your sister, but now that it has been identified, looks like the team have pulled together pretty fast with a plan of treatment starting next week. Hoping and praying that her breathing, cough and general weakness will get better in that time and she will be more mentally prepared to go for her treatment. It’s great that you and your nieces have been proactive and there to really support her.
Do keep us informed. If you want to know the stories of the members here, just click on their name which will take you their profile page. There are several members here who will be able to support you and your sister through this time.
Regards

Baxter2

Glad you've been able to get some feedback from your niece @Concerned37

It's good to hear that the appointment seems to have gone well and that treatment is starting very soon. I'm sure this must all be such a lot to take in and process for your sister, yourself and all the family. Hopefully she'll join us soon and would be most welcome! You may find some of the charity's publications helpful to have a browse through meantime.

Sending lots of love

Karen 💜💚💙❤️💛

Lirio345

Ahh thank you for the update @Concerned37. Your sister’s team are clearly on the case and have responding quickly to get the treatment plan in place.

You might want to share with your sister that they will go through all possible chemo side effects next week which can be scary. They have to do this as she will be asked to sign a consent form. The thing is that most people get away with just a few and her team will do everything they can to minimise them.

Take very good care, Kim :x::x:

Gypsy

Dear @Concerned37. The treatment sounds like that which many of us have had and wonder if it is to be Oxaliplatin by infusion and also Capecitabine tablets taken for two weeks and then one week off before it all begins again. If you search the publications on here, there are some really easy and informative 'reads' and your sister might like to look at those such as 'my treatment pathway'. We really can help on here by sharing our experience and knowledge of chemo and give tips if she wants them.
We'll all be rooting for her and wish her all the best with it all. :x::x::x:

DianeS

Hi @Concerned37 I would like to welcome you to our forum, and Iam so sorry it has taken such a long time for your sister to be diagnosed. It does sound like she has been offered Oxaliplatin and Capecitabine tablets as @Gypsy has suggested. The forum will be a big help to your sister and family, it is somewhere where you can express your fear and ask as many questions as you like, and somewhere where we have all been through similar situations, which will help you not feel so alone. Hope all goes well with your sisters chemo. Sending love Diane :x::x:

foster mum

Hi @Concerned37 , my husband joined the forum over a year ago. I was the chosen one for this !!!! Illness, but didn’t want to read or post so my husband told me snippets of info to help me through my journey. I began posting and reading a couple of months ago, and wish I had done so way back in the beginning. The support and info these guys have is invaluable. I had the same chemo cycle your sister is going to have and it is doable. Others on this site suggested looking at chemo as your friend, after all it’s going to fight for you! Take care and good luck to your sister :x:

Hans

@Concerned37 good morning. I just wanted to say how sorry I am to hear this. My brother has bc and so does my wife. Neither wanted to come on the forum while I have found it very valuable.
The treatments are long winded but good.
So be careful yourself, stress is a funny business!
I will be thinking about you all today, you see, bc really affects the whole family.
Xxx
Hans

Tiffany

@Concerned37

Hi there. I am so sorry to hear about your sister and the complication that she faces. My husband was also diagnosed with Stage 4 Bowel Cancer with extensive peritoneal mets in June 15 - PRIMARY UNKNOWN! This is very rare indeed and all I can say to you is please DO NOT GOOGLE!!! It will not help you and I can promise you that most of the stuff you read is rubbish.

If you click on my name you can read my bio and what my husband has been going through. I can't lie - it has not been an easy road but we have had some good times and my hubby is still here having treatment and things are progressing forward. We are now talking to the surgeon about the possibility of an curative operation which would be amazing after 4.5 yrs.

There are many people on here "living with cancer" and you will find that words such as terminal and palliative are not that popular around here. I prefer to keep positive and ensure my hubby has a good life. We see friends, go on holidays and try our best to enjoy ourselves as much as we can. I make sure my hubby eats well, exercises regularly and does the things that he loves the most. I have even taken up gardening so I can join him pottering around outside!

The other thing that I want to mention is that diagnosing my hubby was also a nightmare, He passed a full medical only six weeks before his stage 4 diagnosis. His CEA has never been raised and his cancer also does not show clearly on scans and was also found through biopsies. This is all quite rare and I have learned not to question why but just ensure we are seeing the top people around and not giving up.

Please let me know if you want any more info. I remember how confused and desperate I was at the beginning and how this forum helped me more than anything else. I hope I can help you too.

Lots of love, Tiffany :x::x::x:

Concerned37

Thank you all for your kind words and support. From what I've read it does sound quite promising and not the "end of the world" as it first seems.
I've still not really taken it in that my sister has cancer - seems a bit surreal, you know it's happening but it's not really hit home. I am very good at shutting things/problems out and not dealing with them only for them to surface many years later, which is why I think writing on here may well help me in terms of coping with this.
You have all given me a lot of positives which I will pass on to my sister which I'm sure she will appreciate greatly.
We'll find out on Wednesday exactly what her treatment will be, I've made a note of what has been suggested it might be by some of you - so we will see.
I'll send you all an update once I know more. In the meantime I hope you are all doing well, you are all such lovely people.
Thank you
Michelle :x::x:

Concerned37

Hi all, just thought I'd give an update on my sister. She is now on her first cycle of chemo and as many of you predicted she is on Oxaliplatin and Capecitabine tablets. She is doing well, although she had to return to hospital for a couple of days after her first session because she got an infection, but so far so good she is stable. She is very weak but at least now she is taking the morphine at night and is getting a good night's sleep and is eating again which is good news. Although her tastes have changed and she can only eat quite bland food, anything with a strong smell makes her feel sick - is this a common thing?
Her cough is getting slightly better - she can talk for a bit longer before she really starts coughing.
What is good is she seems to have got some of her fight back and is looking to the future now and planning a weekend away some time next year.
She starts her second cycle of chemo next Thursday. I know everyone is different, but I was wondering how long it normally takes for the chemo to start working and when she might start to feel stronger. She has been given a wheelchair as she can't walk very far at the moment without feeling breathless.
I see there have been so many more people join this forum since I was last on here, it is so scary, but I know they will all get so much comfort from you all.
I hope everyone is doing well, my thoughts are with you all.
Michelle :x::x:

Gypsy

Dear @Concerned37 . I'm so glad that it is sounding a little better for your dear sister. I think that issues to do with food are common but one thing I would say is that there are many types of anti-sickness meds available and they will more than willing to offer a different one that could suit her better. Do not be afraid to discuss this and ask.
I stuck to what I considered to be 'safe' foods as well and I know that the chemo wipes out your taste buds so it can be difficult to enjoy food for that reason as well. Tell her to eat what she fancies, a little and often if needs be and to try and make it all count. As high in calories as possible was what I was advised and to add calories where possible. Things like cheese sauce on your mashed potatoes and cream on your pudding. (I found that hard though but it was the advice).
Chemo can be tough but it sounds as though she is doing better and very hopefully it is already zapping the cancer as that is the purpose, right from the outset.
Love Gypsyxxx