I am 5 weeks since bowel obstruction surgery and doing well. I ended up in
A & E again earlier this week with chest pain on my right side & right shoulder. The hotline said I need it checked as could be a clot.
I spent 8 long hours there, sooo busy, to be told 2 nodules in my left lung had grown from 16mm to 19mm in the last month. They suggested I get a CT staging scan with my oncologist & team. I contacted them, & was advised it would be discussed in the MDT meeting today (Friday), but unfortunately when my gynae nurse called me, she was so unclear on things, I'm still unsure, & now its a bank holiday. An apt has been made for me for Tuesday morning with my Consultant. I have been told the treatment is further chemo. Yet, although my CA125 had risen to 250 after surgery (5 weeks ago) it is now decreased to 125. None of this makes sense to me, and my team had advised they thought they were benign originally as there had been no change in size during the course of my treatment.
Can anyone throw any light on this please, or has experienced something similar? I have stage 4 clear cell btw. Thanks.
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Kazzh
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I really don't think nurses and Dr 's realise how stressful the waiting for results and answers are! The best way to look at this is at least you have an appointment early Tuesday. Write down what questions you have ready, and if you're not happy you can always get a 2nd opinion on things. I sounds like more chemo but you can do this and get back on track X 🥰 big cwtches X Rhian X
After surgery CA125 can rise due to information . Mine did and then a few weeks later came back down. My oncologist said this was a normal response after surgery. I hope you get some answers soon, I can image your anxiety having to wait now re bank holiday. Keep us updated. Thinking of you.😘😘x
Don't worry too much about the ca 125. It is not a truly accurate indicator. Mine has been over 200 for at least 15 years up and down. See what the scan shows. I know how hard it is waiting. You actually never get used to it . Sending you good vibes..
Maybe you could ask for a PETscan which would show whether the nodules are cancer. I have a number of lung nodules they’ve been following but mine haven’t changed. Hang in there over the weekend!
I don’t blame you for being confused, it sounds very confusing. Have you ever had a second opinion, or do you think it might be a good idea to get one? Your team sounds a bit “all over the place” about what to do next. Good luck to you.
They really are! I am losing faith & may request to see someone at the Marsden as I am currently being treated at Royal Surrey, Guildford. Unless its worth going private 🤔
When my mum first got a diagnosis from her gyno (who referred her to a gyno oncologist 2.5 weeks later), she was informed the MDT had staged her cancer as stage 4 and uncurable and potentially no treatment or surgery was available. When we met the oncologist later, she said there were options, chemo could be done, surgery may be possible after some chemo, and things weren't as bad as the gyno described, then explained that gyno's often describe worst case scenarios so that you can process that before hearing 'better news' from the oncologist.
This to me was truly insane, like who does that to people? We spent those 2 weeks as absolute wrecks. Absolutely shocking bedside manner. So sorry you've been forced to wait over bank holiday.
Some professionals just dont have the people skills, my gynae nurse (she is the lead one) is pretty poor. I complained and started seeing a nurse who is under her, she is so much better & very lovely, but was on leave this week sadly 😕
My wife had a not dissimilar experience, it feels sometimes people simply don't understand the impact of words.As a consequence of her experience a group supported by the cancer alliance put together a play based upon her experiences , it has now been filmed and shown to healthcare professionals.
good luck with your appointment today. Sounds like the nurse being unclear has really been so unhelpful and so confusing. I wish they would put themselves in our shoes before speaking. and be more careful with the words and language used. Thinking about you and sending hugs. Hope chest pain is better and you get answers this morning . Xx
Oh I so sympathise. I have tried (as many here) to get referred to RM with no luck. My dealings with my team are really confusing as for two months, they push for more major surgery and more chemo, then start saying wait and see and acting like they didn't say the first thing. Also clear cell. Have a lesion that has doubled in size (that they say hasn't changed?) but is very small, gone from 7mm to 13mm in a matter of weeks. Had a scan yesterday and keeping fingers crossed. CA125 has not been a good marker for me but it did go up after my first surgery but was 9 all through first recurrence, second op and RT. Hope you have some answers now. Virtual hug xx
Hello Kazzh - when my lung nodules started growing after a period of dormancy, I was offered observation, chemo, or consult for surgery or radiation. After my consults we chose Stereotactic Body Radiation Therapy (SBRT) which I tolerated very well. Easy compared to chemo! The nodules were “obscure” on the first post scan and are “smaller” on the second post scan. Looks like it was an effective treatment. One onc called it my “spot welding.” Chemo doesn’t seem to make a difference to my nodules (carbo and taxol). I am Stage 4 since Dec 2020. Hope this helps to discuss with your team.
I spoke to my onc. She said surgery is definitely not an option for several lung nodules unless there is a solid mass to remove, risk is collapsed lung.
SBRT only targets one area so again not an option, I do have mets to para aorta lymph nodes.
Looks like Caelyx is my option atm, I have to be 6 months post bowel surgery to join trials (only 2 atm)
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