topic Re: Early stage lung cancer in Living with cancer

Early stage lung cancer

Rikki1 — Mon, 07 Sep 2020 09:40:22 GMT

Hi, I was diagnosed with early stage lung cancer in May this year which was aggressive and on the advice of my surgeon I had half my left lung removed. After the operation I was told that they had not got all the cancer and that there was some cancer left where they put the staples. I was going to have chemo and radiotherapy, but because I was very weak from the operation they decided to just do six weeks radiation, which I finished last week. I have been left extremely breathless, still very sore in the left rib area and have an extremely sore left breast and still can’t wear a proper bra. Today I noticed my hair is thinning and I’m very tired but can’t sleep. I was wondering if anyone else has similar problems with a left lobectomy and radiation. Feeling totally unsure what is happening to me. Thanks.

Re: Early stage lung cancer

Rikki1 — Tue, 08 Sep 2020 08:29:13 GMT

Rikki1 i didn’t mention that this was my first post in the Group. I also would like to add that towards the end of radiation I had a CT scan to look for blood clots because of my breathlessness. I did not have blood clots but it did show a pericardium effusion and I am waiting on results of a heart monitor for irregular heartbeats. I am very worried that the radiation may have damaged my heart. Thank you.

Re: Early stage lung cancer

sch — Tue, 08 Sep 2020 23:43:23 GMT

HI Rikki1,

Sorry to hear about your diagnosis. Welcome to the community.

You might already have seen this, but there is this on understanding Radiation Therapy.

https://www.cancercouncil.com.au/wp-content/uploads/2020/04/Understanding-Radiation-Therapy-2019.pdf

I haven't been through what you are going through, but I just wanted to reach out to you to see how you are feeling and let you know that I am thinking about you.

-s

Re: Early stage lung cancer

Rikki1 — Wed, 09 Sep 2020 09:15:41 GMT

Dear sch - thank you for your lovely concern for me, I really appreciate it. I saw my doctor today and got my results from the halter monitor and it showed that I have many irregular heart beats, mainly many more heartbeats than you should have and I have to see a cardiologist. This explains all the palpitations, breathlessness and tiredness that I have.

Re: Early stage lung cancer

Rikki1 — Thu, 10 Sep 2020 08:37:38 GMT

To: Jill22

it seems as though you replied to my first message Jill22 but I can’t or don’t know how, to open your response to me. Thank you so much and I would like for you to know that people like you really make a difference. Thank you so much, Rikki1 ❤️❤️

Re: Early stage lung cancer

Lolie — Fri, 11 Sep 2020 08:39:30 GMT

Hi Rikki

I hope the cardiologist is able to give you some relief.

Who is your point of contact for side effects/late effects? I have early stage lung cancer, too, and I was given a care co-ordinator's number to phone if I'm having any issues. It definitely makes it easier than trying to work out which particular doctor I should contact.

Re: Early stage lung cancer

Rikki1 — Tue, 15 Sep 2020 01:25:51 GMT

Dear Lolie

thanks for contacting me regarding a care or co-ordinator to contact with any concerns. I haven’t been given the name of anyone to contact and it sounds like a great idea which I would like. I don’t know I would ring to discuss issues that do come up, except for my sister or my girlfriend, but you need to have someone who has a medical background who understands. I don’t have a good relationship with my oncologist which makes it difficult because the nurses and other staff who would know my oncologist would not want to get involved. I really don’t know what to do.

How are you coping yourself with lung cancer? Have you had an operation at all. I hope you are ok and really happy for that you have someone to turn to. My very best wishes Lolie and I would love to keep in touch and thanks again 🌸

Re: Early stage lung cancer

Lolie — Tue, 15 Sep 2020 02:29:06 GMT

I had a high resolution CT scan yesterday to check for fibrosis and if that comes back OK I will have a planning CT tomorrow and start stereotactic radiation on 29 September.

I'm fairly OK, although I find the "hurry up and wait" part of this frustrating. There always seems to be one more step before I can start treatment. I will feel better once a plan is locked in.

Re: Early stage lung cancer

Budgie — Tue, 15 Sep 2020 02:36:04 GMT

Hi @Rikki1,

I'm sorry you're going thru such a hard time. You mentioned you don't have a good relationship with your oncologist; have you thought about changing to a different one? Sometimes you just clash with a person. Perhaps you could ask your GP for a referral to a different onc, citing your difficulty in relating to your current one. If you don't get along, your health will suffer in the long term. One of my oncologists was extremely arrogant & rude so I asked to see someone else. There's nothing wrong with that, & I was much happier.

Please take care

Budgie

Re: Early stage lung cancer

Rikki1 — Tue, 15 Sep 2020 10:18:59 GMT

Dear Budgie, thank you for your comments regarding getting a new oncologist. I would like too, but I have now finished my radiation and I wonder if it’s worth it. I had a “sort of argument” yesterday with him/her, and I am having a breath test on Thursday and a CT scan at the end of the month. It seems to me that my oncologist only wants to know about lung cancer and no other problems I have. I’m so confused now and scared of what may be wrong with my heart, that I don’t know what to do. I’ll talk to my GP tomorrow. Thanks so much Budgie, I am so glad you replied, I’m always grateful 🌸

Re: Early stage lung cancer

Budgie — Tue, 15 Sep 2020 10:44:40 GMT

Yes, unfortunately oncologists will only be interested in the cancer, & any other problems should be dealt with by the GP or respective specialists. I made that mistake once 🤭.
Even though you've finished your treatment, if anything happens in the future, you can still request another oncologist, one you'll be happy with.

Good luck 🙂

Re: Early stage lung cancer

Lolie — Tue, 15 Sep 2020 21:16:02 GMT

I'm sorry that your oncologist isn't more helpful. My haematologist was always quick to consult with other specialists where appropriate and it was her pushing which got me an appointment with the pulmonary team only a week after she referred me. They, in turn, made sure that I was contacted within days about seeing other clinicians.

I absolutely think it's worth finding a new oncologist. You will need follow up, at the very least.

Perhaps once your GP refers you to a cardiologist, you could ask the cardiologist who they would recommend.

Re: Early stage lung cancer

Rikki1 — Wed, 16 Sep 2020 08:29:22 GMT

Dear Lolie, thanks for your reply, i really appreciate your kindness. I had to speak to my GP today and he was very concerned about what I told him and is going to refer me to a new oncologist who I have met and she is really lovely. I am so glad that he is doing this and he has organised for me to see a cardiologist on Monday, which can’t come soon enough. I’ve been feeling really down the last few days and didn’t sleep at all last night.
I thank you again and you are so right. Many many thanks, Rikki1 🌸

Re: Early stage lung cancer

Lolie — Wed, 16 Sep 2020 09:10:16 GMT

Hi Rikki

I'm glad you were able to get that sorted.

Can I suggest that you contact Look Good, Feel Better and register for one of their online workshops. I attended one just before covid and it was a great pick me up. I think they're all online at the moment. There was over $500 worth of makeup in the Confidence Kit I was given.

https://lgfb.org.au/workshop/

Re: Early stage lung cancer

Rikki1 — Wed, 16 Sep 2020 09:14:43 GMT

Thanks so much, I’ll check it out.
Rikki 🌸

Re: Early stage lung cancer

Rikki1 — Wed, 16 Sep 2020 09:16:41 GMT

Budgie, yes you are right and my GP is organising for me to see a new oncologist. Thanks so much Budgie for thinking of me 🌸

Re: Early stage lung cancer

Rikki1 — Wed, 16 Sep 2020 09:23:10 GMT

Lolie, all the very best for the CT Scan you had and hope you can organise a plan to suit you quickly. Good luck 🌸

Re: Early stage lung cancer

Lolie — Wed, 16 Sep 2020 09:29:19 GMT

Hi Rikki

Scan results were fine and treatment will start in about 2 weeks. The past few weeks have been a bit of a blur between tests and appointments, but it's all locked in now and all I need to do is turn up on treatment days.

Re: Early stage lung cancer

Rikki1 — Wed, 16 Sep 2020 11:39:52 GMT

Lolie, glad to hear the scan results were fine and that you’re starting treatment in a couple of weeks. Good luck and keep me informed of your process. I’ll be thinking of you, Rikki 🌸

Re: Early stage lung cancer

Lolie — Tue, 13 Oct 2020 07:40:19 GMT

Hi Rikki

Just wondering how things are going for you now and whether your symptoms have eased.

I finished radiotherapy yesterday so I hope I can finally get stuck into the house and the garden before Christmas rolls around.