Understanding the next steps for mum

[nandeb21]

Morning ladies. I haven't posted for a while regarding my mums cancer. I guess there are times when you feel like you're ok with it and then times when you feel like you don't understand how you feel or what's happeneing.

Today, well the last few days have felt a bit like that. So I'm hoping for some guidance please.

Mum had 4 lots of chemo (the last one was about timing to get her to surgery) Then she had a big surgery, ovaries, appendix lots of other tumours. She's recovered from that pretty well. But she saw her surgeon on Monday and they told her: They removed a lot of tumours but there were many on her diaphragm and bowel. They could have removed the ones on her bowel but it would have left her with a perminat stoma and that would have had implications on her quality of life. They are giving her 2 more chemo and then after that check ups every 3 months. Mum said they will give her chemo as and when she needs it. She keeps saying it's treatable.

I feel like the battle is over and they are saying we have done all that we can, fingers crossed.

I obviously can not discuss this with mum and dad, they are behaving positive but I'm not sure how they feel underneath as I haven't visited yet.

I'm hoping you guys can explain what happeneing, what the prognosis means in reality.

Thank you in advance

Debbie

[Katmal-UK]

Hi Debbie. It may be worth speaking with MacMillan or Ovacome. OC can be treatable. I was diagnosed stage 3 and now in my tenth year despite 2 recurrences. Do you know what stage your mum is? Sending you a big hug. My mum had OC too so I do know how you are feeling, both as a daughter and now a patient myself. xx Kathy xx

[nandeb21 in reply to Katmal-UK]

Thank you Katmal. Mum was stage 3. 10 years gives me hope. She isn't cancer free. I guess I felt without a NED we didn't have hope. I was clearly wrong.

[lorraine71-Australia]

Hi Debbie, Your mum is right it is treatable , I'm 73 tomorrow when I was diagnosed my family was told I would not see the year out, that was 3 years ago it's not always been easy.

I'm on my 4th line of treatment and it is going well, as for your mun and dad behaving positive it is their way of handling it not a bad way if it's helping them. I know as a daughter it is not easy I have one daughter who is my full glass person and one who can not deal with it, Spend quality time with your mum and be there when she needs you. remember we are here for you when you need some one to turn to ..Best wishes Lorraine xx

[nandeb21 in reply to lorraine71-Australia]

I'm glad they are positive. I've tended to need a few days every time there is new " news" to process.

When you say 4th line of treatment. Do you mean, Chemo finished, they kept an eye on you and then things got worse so you had another "line of treatment"... am I understanding this correctly?

Thank you for your help x

[lorraine71-Australia in reply to nandeb21]

Hi Debbie, Yes I've had 4 different chemos, each time my 125 or a ct scan has shown progress in the cancer I've had chemo. This one I'm on now is Caelyx and Carbo and is doing a good job, my 125 was 1300 and after 3 treatments it is now down to 176, I have 3 more to go and hoping for a good break.

It has been hard at times but I've manage and my family have been very supportive, so when and if your Mum needs you I know that she will appreciate your support.

We are so different when it comes to treatment my oncologist told me, it's trying to find that one that suits us, on this site you will find many lovely ladies who are in NED for many years, I hope your Mum will be one of them

Best wishes Love..Lorrainexx

[nandeb21 in reply to lorraine71-Australia]

Lorraine, you have been so helpful and I think I now see clearly where my mum is in her journey. NED isn't possible with mum. I do know her 125 is much lower than ever before and so now we just need to enjoy the times when she has a good count and hold her hand when she has to fight back.

I'm hoping with my financial support I can move them closer. I talk to her every day and visit most weekends but having her near is what we all really need. But everything has its pros and cons. It's a big decision.

[lorraine71-Australia in reply to nandeb21]

Hi Debbie, I have never been NEDs in the 3 years just a couple of break I'm hoping this time I'll be lucky, as you said enjoy the good times and be there for her, hoping there will be many many good times...lorraine💙💙

[Lyndy]

Hi Debbie

I had very similar treatment to your Mum...4 chemo then op then chemo and I was told that having surgery makes your remaining chemo more effective...presumably because its effect is concentrated on those remaining bits and pieces rather than on a large mass.

That being so I would wait to see how she does...she's obviously done well up to now. Has she been offered genetic testing? I can't remember if you said that in your previous post. xx L

[nandeb21 in reply to Lyndy]

She has been genetically tested. We await the results and obviously that has implications for me. Which I'm not worried about at this time.

Are you NED now? I guess I was hoping for that despite knowing it may not be possible.

Thank you for your support.

[CancerCarerChats]

Hi Debbie, I was reading this and your earlier posts as your mum's treatment is very similar to my mum's and I can fully understand how concerned you are about your mum as I am about mine all the time. I noticed in one of your earlier posts you described that your dad attended your appointments with your mother and that you felt he may hold back on some of the questions and that you found it difficult to attend because you live so far away. Other than caring for my mum, I also work. On days that I work, one of my other sisters will care for my mum and take her to appointments. As I don't want to miss the information and we all agree that I add valuable insight since I live with my mum, my sisters will often dial me into the appointment with the consultant so that I can join the appointment. This could be something that you consider. Our consultant does not bat an eyelid (anymore) when my sister whips her mobile out and dials me into the appointment. They have to understand that we have busy lives too but want to help them in the treatment. You could ask your dad to dial you into the appointment or if he does not have a mobile or a calling plan that allows it then ask the consultant, who will have a phone on his desk, to dial you into the appointment. If you cannot dial in at that time, you can always ask the consultant to phone you as you have some questions.

Best wishes

CancerCarerChats

cancercarerchats.blogspot.co.uk

[Tesla_7US in reply to CancerCarerChats]

Or, if one has an iPad you could Facetime the whole group meeting!

[nandeb21 in reply to CancerCarerChats]

I did asked dad to give me access to my mums notes at one point as my neighbour is a consultant oncologist. But I think he felt like I didn't trust him to do the right thing so I left it at that. He does so well, I've seen him crumble so often these last few months I never want to be the cause of that.

It's great advice for some people though. I have used it at work when I have teacher parent meetings and both parents can not attend.

[Tesla_7US]

Nandeb, with more chemo it might be possible the tumors on your mother's bowel may shrink and become operable. I had the last 14" of my large bowel (sigmoid colon) removed, had a temporaray stoma for 7 months and then had it reversed, which is wonderful. As to her diaphragm, I had mine ablated with a laser. They removed all disease by burning it off. You might ask your surgeon about the possibility that if your mum were to have another surgery might they be able to do this for her? Also, do get a second opinion on all of this. Some doctors are far more surgically aggressive than others.

[nandeb21 in reply to Tesla_7US]

That's interesting. They told mum they left the bowel to help improve quality of life. I think that stuck in my mind as an indication that taking it out wouldn't help, only make her unhappy. I think they did attempt to ablate some of the diaphragm mums words were "they scraped off what they could".

There is talk of them moving closer to me. This would mean a new set of eyes on her note and that could result in a different perspective I guess.

Thank you for your response.

[Tesla_7US]

Nandeb, My bowel was resected to save my life. Leaving it in would not have helped. No amount of chemo could have saved me without this surgery.

[nandeb21 in reply to Tesla_7US]

It must have been scary. I'm so sorry to hear of your struggle. Glad to hear you are doing well x