Mum's cancer is back

[BusyBee75]

Hello all this is my first post.

My mum was diagnosed with Lung Cancer last Nov, had a lobectomy in Jan, all good on first 3 month scan however 3 months later, fluid/presence was showing, following pet & biopsy it's been confirmed cancer is back in lung and pleura around lung. We saw oncologist who said chemo might keep it at bay but will not cure it. I'm so confused as consultant who removed lobes of lung said all cancer gone & low grade yet 6 months on we've got incurable & stage 4. We're meeting chemo team this week what question should we ask please? Thanks x

[bevbettison]

sorry to hear abo ut your mum. Unfortunatly the trouble with cancer is keeps creeping up on you. Ask what sort of chemo they are thinking of giving your mum and what side effects they think it may have and if there are side effects what help your mum can expect to deal with them. Also you could ask if there are any trials going on that may be suitable for your mum. Don't hesitate to keep asking questions and take a pen and paper with you because you tend to forget what has been said. I hope things turn out ok for you , God Bless Bevx

[BusyBee75 in reply to bevbettison]

Thank you Bev, I will definitely ask about what chemo she'll have & I never thought about trials. The oncologist went thru all the side affects last week, I was pleased to hear sickness isn't as common as it used to be, thanks again x

[miasam]

I'm sorry to here your news it's hard when you think that everything is ok and then you find the nasty thing has come back .there same thing has happened to my husband had part off lung taken a way last June .found end off may it had come back so we like you was shocked we have had pet scans head scans ct scan and now an ebus my husband is going to have more off lung taken off as it hasn't gone into pleura. I hope everything goes well for you .you never said how old your mum is my husband is 72 let us no how it all goes X

[BusyBee75 in reply to miasam]

Hi thanks for replying, my mums 72 too! I'll definitely let you know how we get on tomorrow after meeting the chemo team, thinking of you and your hubby xx

[RoyCastleHelpline Partner Ask the Nurse Roy Castle]

We are sorry to hear about the recurrence of your Mums cancer, and it is understandable you are confused and a frightening time for you all. "bevbettison' has given good advice in what questions to ask at the meeting this week with the chemo team. Having clear information will aid in relieving some anxieties you may have, our minds can work overtime whilst we feel we are in the dark and nothing seems to make sense. However there are great professionals involved in the team that will be caring for your Mum and the family. Does your Mum have a lung cancer specialist nurse allocated to her, if not ask to be referred to one, they are of great value and can provide a lot of information and support.

As well as asking the type of chemo, any side effects and how this will be managed, you may wish to ask the duration of the chemo, as an outpatient/ inpatient and the frequency of appointments. Write all your questions down and take them with you. No question is too stupid and each one counts.

We have a variety of information on our website roycastle.org or we can post some booklets out to you about Chemotherapy and living with Cancer, you can also order these online from our website roycastle.org/ayqpack

Please feel free to call us on our helpline number 0333 323 7200 (option 2) if you want to talk or discuss anything, we are here to assist you in anyway that we can. The blog is very useful as you can receive a lot of support and first hand experience.

Surround yourself with lots of support, especially as you are possibly going through lots of different emotions and processing the information. Let us know how you get on and we wish you all the very best.

The care team at Roy Castle Lung cancer foundation

[BusyBee75 in reply to RoyCastleHelpline]

Thank you, I *think* she has a specialist nurse as we have a great nurse we met at lung clinic who also came to meet the oncologist with us & even rang mum today! I just need to check she'll be with us in the future as now being treated at the chemo centre not our local hospital where she's based. Thanks again X

[jillygirl]

Another hint is if you have another friend or family member who can go with you both, this way you shouldnt miss anything that is said. Sometimes we hear only what we want to hear. Hope you get some good news next appointment. xx

[BusyBee75 in reply to jillygirl]

Thank you, that's a great idea x

[wendybsouth]

Hi,

Same thing happened with my mum but not so soon. My mums came back in April or rather she was diagnosed end of April. Had lobectomy Oct 2012 and clear until now.

Same situation though, in pleura and stage 4. Mum has had lots of tests but gets results on 3rd August when she starts chemo or a trial drug. She has signed up for a clinical trial so will find out in August if she qualifies for it.

My mum is also 72. I lost my dad to lung cancer at 58 too. Symptoms my mum has is breathlessness when walking and slight pain in ribs but she also has a pulmonary embolism caused by the cancer.

Don't know wether it has spread anywhere else until we get all results in August.

I've read so much about orthodox and alternative treatments and there is slit if information out there but don't believe all you read if you google things. There are new treatments all the time. They should do mutation testing on the tissue they removed to see if your mum has the ALK or EGFR mutation that can have targeted treatment too. My mum doesn't have any genetic mutation.

I'm a member of the Macmillan lung cancer forum, it's amazing for information.

All I will say is do your research, if your mum is willing to sign up for a trial ask which hospitals are doing relevant trials and if they are in travelling distance for you.

People are living with stage 4 lung cancer for many years. My mum was ill in January with chest infections which is when I think it started to return, we are now July and mum has had no treatment yet, she is getting married on 29/7/16 so decided to start it after wedding. She feels no worse than she did in January, I'm just hoping she copes well with the treatment and it controls the growth cos to go through it for no benefit would be heartbreaking.

Keep us all updated and wishing you and your mum all my best wishes

Wendy x

[Marieke68]

Hi, Also my mum is in the same situation, 72, diagnosed in October with NSCLC, cancer in lung and pleura, stage 4 adenocarcinoma never smoker. She had a mutationtest by a biopsy and turned out to have a EGFR mutation. Therefore now she can have targeted therapy and takes pills instead of chemo.

I would strongly advise to ask for a mutationtest from the tissue they took, as if any mutation is found, she might be able to benedit from a targeted therapy as well with less side effects as they only target the cancercells instead of the whole body.

You can find a lot of info about targeted therapy and all thinkable subjects on cancergrace.org, lungevity.org and patientpower.info with lots of info, video's and interviews with great doctors which helped me a lot! We changed to another hospital, first the plan was to start chemo asap but then turned out she had the egfr mutation which changed the plan. She is now on Iressa pills for 8 months, stable and feels quite ok....

(Sorry for my english, I am from The Netherlands Europe)

All my best wishes for you and your mum...

Marieke