Mum is stage 4. Mets to bones and adrenals. Feeling hopeless.

[MissyD1]

Hi all

We found out last week that my mums Adenocarcinoma has spread to her ribs and spine. She also has a pulmonary embolism which is just being treated now as it was previously missed on a scan. We had another oncologist appointment yesterday to organise a dose of radiotherapy to the spine as my mum has been in very severe pain. The oncologist made a comment about radiating other areas if needed and as we weren't aware of other areas I phoned the CNS this morning who told me it has also spread to her right femur and adrenal glands (we were told last week these were clear) the CNS also explained that they can radiate any areas which are painful and that my mums previous biopsy samples are being further tested as although she doesn't have the EGFR mutation she may have others. I asked about chemotherapy if there's no gene mutations and he said that could be discussed. I think they aren't keen on giving her chemotherapy as she had so many complications after surgery and wasn't fit enough for adjuvant chemotherapy and also maybe the pulmonary embolism may make her unsuitable for chemotherapy?

I feel quite frustrated and hopeless this morning. My mums prognosis has changed dramatically in the space of a few weeks and it has been a lot to take in. I feel like every week there's more bad news. I am also worried that the oncologist is going to say she's out of treatment options except for palliative radiotherapy to relieve the pain in her bones. We understand she can't be cured but are hoping and praying that there would be treatment at least to give her more time.

Has anyone else had a similar diagnosis? What were your treatment options?

Thank you in advance x

[Denzie Moderator Volunteer]

At stage 4 all treatment is considered palliative rather than curative. Whether or not she can have chemo will depend on her ECOG Performance Status. If she is able to care for herself for at least half of her daily activities she will likely be able to have chemo. If she is not able assist in her own care they would not offer chemo.

Here in the US, palliative care is not the same as hospice care. My understanding is that is different in the U.K. But I don't know.

This link will explain the Performance Status. If she is anywhere 1-3 it's good enough. If it's 4 not likely.

ecog-acrin.org/resources/ec...

[MissyD1 in reply to Denzie]

Hi Denzie, that's useful to know! I would say her performance status is 2.

Here in the UK all stage 4 treatment is considered palliative too and it is different from hospice care. We understand that my mums treatment goal is primarily to relieve symptoms and increase her quality of life but hope that if she is able to undergo chemotherapy or targeted therapy that will give her more time.

Thank you

Debbie

[anrean]

I am sorry to hear that things have changed so quickly. Because I am on my 5th cancer, and because I have helped so many people, i have done a lot of thinking about quality v quantityl For me, and this is only my personal feeling, quality is more important than quantity of time. One yer ago tomorrow I lost my best friend of 35+ years - she chose quality, and I have also chosen quality. It is a very personal decision for each of us. I pray you and your mom come to a decision that works for you. if the team can keep her relatively pain free that is a true blessing. Have you thought about getting a second opinion? Even at this point, you never know what it would bring. God bless all of you!

[MissyD1 in reply to anrean]

Thank you Anrean and I am very sorry that you lost a dear friend. I hope that you have lots of wonderful memories that give you some comfort. I understand what you mean about quality over quantity. My mum had chemotherapy for breast cancer 6 years ago and did not want to experience the horrible side effects again. I think that if there is not much hope of longer survival or pain relief then she will not take chemotherapy.

Best wishes to you

Debbie x

[anrean in reply to MissyD1]

I hope you and your mom do a lot of talking so that if decision-making falls to you, you are assured of doing the right thing. I too went through breast chemo and just plain won't do it again. However, I've heard that some of the chemos available for lung ca aren't that bad; I hope they are right. I have had extensive conversations with my health care proxy so there are no questions about what i want.

Thank you for the condolences. I still find myself wanting to pick up the phone or will turn to talk to her while driving. Jean was my best friend and we were each other's health care proxy. No one thought she would go before me. Fortunately we had long discussions about what she wanted, so when the time came I made the right decisions, along with the help of her husband, and have no regrets. We did a lot of "What if....." talking to cover as many bases as possible for both of us

You and your mom are in my prayers.

Lauri-Anne

[MissyD1 in reply to anrean]

Thank you for the prayers Lauri-Anne,

We will have that talk so that I know what she wants. I would only ever want to carry out my mums wishes, as you did for Jean.

I think the hardest part of losing someone close to you is missing the everyday things that you shared and having a new daily routine. I hope that knowing you made the best decisions for Jean gives you comfort and peace.

Sending you blessings,

Debbie

[anrean in reply to MissyD1]

Debbie, please do have that conversation with your mom, and then have it again and again and again. It is a very dificult conversation, but it will also help you know for certain that you did the right thing. Jean went with me to almost all of my doctor appointments, so we had the conversation often. It is the constant conversing that leads me to know that I made the right decisions. As tough as they were, and as certain as I am that I did the right things, I still have questions sometimes.

My new health care proxy doesn't like to have the conversation and that concerns me because I don't want him to have any regrets. My time frame is short and I am very concerned about him knowing that letting me go will come back to haunt him.

Blessings for you and your mom

Lauri-Anne

[Steph60]

I am so sorry- it seems overwhelming. We are here for you and your mom, sending you both a big hug.

[MissyD1 in reply to Steph60]

Thank you Steph60, we are all overwhelmed by this. Just praying for some good news x

[JeanE41]

You and your mom have been on quite a journey with this nasty disease. The only advice I can offer is to enjoy your time together doing things you both enjoy. I, personally would prefer quality over quantity. At 75 years old my perspective might be different from someone who is younger. My thoughts and prayers are with you and your mom.

Jean

[MissyD1 in reply to JeanE41]

Thank you JeanE41. Everything has happened so quickly. I think if there isn't much benefit to chemotherapy then my mum will chose quality of life over quantity. I still can't quite believe this is happening!

Sending you best wishes

Debbie x

[gibdonnalee Community Superhero]

Sorry to hear your mom's going through so much. I suppose all we can do is take things day to day. You are there for your Mom, as I was for mine with COPD. She passed 3 years ago. I have stage 4 lung cancer,middle lobe removed.

I try to be thankful for everyday , and find things to do that give me joy. Being your Mom's caregiver means a lot to her, I'm sure. Just keep reassuring her and do whatever possible to keep her spirits up .you will be making many fond memories for as long as Mom has left. God Bless, prayers for you both.

[MissyD1 in reply to gibdonnalee]

Thank you Gibdonnalee x