Watching and Waiting is frustrating!

[ssjmichael]

Hi all, some of you might have read a recent post of mine, where I detailed that my mom, Norma's, recent CT scan showed very minimal signs that she may be having a recurrence. She had an enlarged lymph node(s) in her chest area, and a tiny amount of fluid by an abdominal hernia.

Her doctor made it seem like this wasn't enough to start her immediately on chemo, despite her CA-125 being very high, and recommended she get scanned again in 8 weeks, or sooner if any problems arises.

At first, I was pretty relieved about this. Because of how high her CA-125 jumped in such a short time, I expected the scan to show much worse than that. But now, this whole "watching and waiting" thing just makes me feel kind of anxious, and uneasy.

Because of the lymph nodes being in her chest, she was going to be referred to a Thoracic specialist to see about doing a biopsy. But now that doctor has said it's not possible, and maybe do another scan in 3 months? Which is obviously longer than the 8 weeks proposed by her main doctor.

I just keep worrying that the more time that elapses, the worse off my mom will get, though right now she has no symptoms whatsoever. . While my mom doesn't look forward to going back on chemo, the inaction kind of makes her feel restless too

Sorry about the long post, I just had to vent a little about how I'm feeling.

Michael

(PS: I figured now is as good a time as any to post a picture of my mom. This was around her 67th birthday last Summer)

[Rachael47]

My oncologist says that early treatment of recurrence makes no difference to eventual outcomes. Sounds unreasonable, but she's done the training, not me!

[Maus123]

Michael,

That's a lovely photo. No way your mom is 67!

I know firsthand how frustrating it is to be on watch&wait, especially if there is some sort of finding and a rising CA125 involved. But I've been told several times now by oncologists in the UK as well as Germany, that treatment approach is slowly changing, and overall survival time is not necessarily longer if treatment starts earlier (at least that seems to be the case for my borderline/low grade OC; it might be different for your mom's disease?). So the focus is on picking the right time for treatment, and inbetween, maximizing quality of life.

That said, you might still want to keep an eye on the scan date . Maybe you can help her hold/get that 8-weeks appointment after all e.g. call the imaging dept?

I wish you and your mom the best, and a long symptom-free time period, before treatment has to start again.

Maus

[Lyndy]

Lovely pic! This process is sooo much about waiting I feel we ought to be experts in it but it doesn’t get easier! x

[January-2016-UK]

Hello Michael

I agree with Maus, it's difficult to believe your mother is 67! That's a lovely setting for the photo too.

I too have read that overall survival time is not necessarily longer if treatment is started before symptoms manifest themselves and clear evidence from a CT-scan that recurrence is definitely underway. I wonder what it was thought a biopsy of the chest nodes might reveal, do you know?

It's good she has no symptoms and so can enjoy this time. However, suggest you stay on top of the CA-125 levels and push for the original scan date of eight weeks that was suggested. Something must have caused the CA-125 to rise but perhaps it's not yet visible on a scan. I was quite happy while I was "watching and waiting" as I had no symptoms (my recurrence was various lymph nodes too) and had the reassurance of a CA-125 check every month and a clinic review.

All the best to you both!

[ssjmichael in reply to January-2016-UK]

Thank you, and everyone else for the kind words, and support. My mom does get a lot people shaking their head in disbelief when she tells them her age. She attributes it to the anti-wrinkle creams, and lotion, etc.. I buy her. I'm an only child, so naturally I was a little spoiled, but now I'm the one that pampers her with nice stuff

I definitely do feel like we have to be more on top of the situation than when she was first treated. She goes to the hospital every couple of weeks to get her port flushed, and they check her CA-125 then, so that's usually the fastest way they know if something is off, and to order a scan, or something else.

In the meantime, I just have to learn to relax a bit I guess. I am thankful that she doesn't have symptoms, and she's still able to move about as she pleases.

Thanks again,

Michael

[lorraine71-Australia]

HI Michael, As the ladies have said early treatment makes no difference too outcome ,

in 3 years I'm on my 5th line of chemo my 125 at one time went 1300 my oncologist got it down to 46.

I'm off chemo for now and I know it's going up again but my oncologist has me in a trial for a new drug, it is not chemo, their hoping it will make cancer more sensitive to chemo this would help ladies with ovarian cancer who recur.

This make me a bit anxious by my oncologist said arfter the 6 treatments I can then go back on chemo.how great if it works for ovarian cancer.

Tell your mum her oncologist would not put her health in jeopardy.

Take care Lorraine xx

[Nicky100]

Waiting is part of the illness unfortunately. There are no swift answers.

If you get to a point where you are questioning the treatment and it does not fit with you, I suggest you go and seek a second opinion.

The clinic I would go to is THE LOC in London.

Other than that, I’m afraid it’s best just to find things to do to take your mind off it and focus on something else.

[thehusband]

For those that have trackable CA125 levels, the rise of this precedes what a scan picks up, which is why they often say wait a couple of months etc, so that they can see the details.

With regards to watching and waiting for recurrence etc, my wife and I always thought that the 'no treatment time' was often more worrying than the treatment time, because at least when you are getting treatment your brain tells you that you are fighting it, so to speak.....

I often wonder whether something like a low dose of letrozole (so zero side effects) taken when someone isn't having chemo, may help to extend recurrence..... In any event it would make the brain think you are still fighting it, and getting treatment...

Good luck to your mum

[Hidden]

Hi Michael. I agree with The Husband that CA125 shows a recurrence sooner than a scan. However, there are cases when a woman's CA125 doesn't rise very much i.e. in my case I knew I had a recurrence as the lymph nodes in my groin were swollen but my CA125 got no higher than 19. My onc said it had become unreliable. I had needle biopsies (2), ultrasounds (2), CT scan & none of them showed the recurrence. However, both me and my onc knew the cancer had returned, due to the swollen lymph nodes in my groin. The PET scan was what finally confirmed it. By then, quite a bit of time had passed.

My onc wanted to watch & wait as he said he only had so many weapons in his armoury. I could see his point but the cancer was clearly travelling already (it was then detected in a breast following a routine mammogram). Then my onc went on long service leave & I saw his partner, who recommended returning to chemo plus a Trial drug. I happily agreed to that and have now been in remission quite a long time, thanks to carbo/caelxy/avastin.

So my jury is out as to whether it's best to get chemo under way early or to wait. I now have more places the cancer has got itself comfy in and from where (it seems to me) it can re-start when conditions are in its favour.

Good luck to your Mum & yourself. Pauline.