Scary - 3mm increase in tumour size

[Kahe]

HI

I would appreciate any help, encouragement😀 or comments . Feeling v panic-ed by this new development . Hoping to get much longer from my first line of treatment as it allows me continue life pretty much as normal

I was diagnosed with MBC, Mar 2022 , several tumours in right pleura (first diagnosed 2011)

Meds, ibrance 125 mg and letrozole (ribo intolerance) . CA 15-3 av 29

I have staging scans every 3 months. To date have had disappearance/ reductions in tumour sizes until this time round.

Last week my scans showed a small increase in one tumour from .8cm to 1.1 cm, others stable or reduced. My onc is happy to wait to scan me again in 3 months....although if I want he will scan earlier. I trust him.

Just wondering has anyone had anything like this happen where it hasn't led to further progression? It is a small change but any progression is worrying.

Many, many thanks for your help ,

Sent from Yahoo Mail on Android

[Kerryd22]

I had a new node light up in May. Twenty millimeters. The radiologist wanted a follow up scan no more than 12 weeks later. In June the scan showed that most if not all Mets have healed and the node was half the size. So I’m still on Exemestane. I was worried about it in March but it turned out I had nothing to worry about. Your marker is like mine - normal. And the progress, if that’s what it is, is minor. According to a video which was posted here, progression is a thirty percent increase in existing Mets or advancing to an entirely new place such as liver or lungs.

You’re doing okay but if there’s a change of treatment needed then that’s what will happen. From my own experience, I would say it’s worth waiting a few weeks to see if the progression continues or not. Staying on each medication for as long as possible is a reasonable goal. Letrazole is infinitely more tolerable than some others are.

[Kahe in reply to Kerryd22]

Hi Kerry, thank you so much for your reply. I've been checking madly every 15 mins for a reply like yours😀, funny how just one positive answer can everything seem better. Thanks for taking the time . Hoping you are feeling well right now, best K

[mariootsi in reply to Kerryd22]

I agree with Kerry. Try to relax . Easier said than done I know.

[awesome4ever]

Hi Kahe. First of all I know it is easy to panic with any changes, regardless of how small they are. It's the nature of the disease we live with unfortunately. However the size of increase you put in your subject line is not what you described in the body of the question. From your description your one tumor increased from 0.8 cm to 1.1...that is only a 0.3 cm increase which really probably is insignificant and I would not worry about that. You have scans every 3 months so wait to see what happens with that tumor size then. Measuring of tumor sizes is very subjective on the part of the radiologist interpreting and when they fall in between axials it can easily be interpreted differently by each person that reads the scan.

On the other hand a 3 cm increase would be significant and a cause for concern....that's the size of a grape.

So take a deep breath and I don't think your oncologist will even consider this progression. The approach even if he did would I'm sure be a wait and see what the next scan shows.

I have been on this MBC journey for 5 1/2 years now with scans every 3 months. The sizes of existing lesions vary all the time depending on which radiologist interprets. Take care.

[Kahe in reply to awesome4ever]

Hi Awesome, thanks for your awesome reply 🙃. My increase is 3 millimetres or .3 cm. Thanks so much for this info. I did question my onc about interpretations etc, he made no comment. It also makes sense to me that with such a small change, anything cld be happening. You have increased my likelihood of a good night's sleep, thank you so much for your kindness, regards K

[Ph17]

hey. Are they nodes?

[Kahe in reply to Ph17]

Hi Ph, no, its a tumour, thanks M

[NPmary]

Kahe, I can say without hestation: NO Worries! These are tiny, I have so many - the scan looks like my lungs are showered with them. Unless they get really big and really symptomatic they are Watched - so, I remember being worried about it - but I learned not to. The lung nodules and tumors change with inflammation, with treatment. My treatment was changed when I had bone progression. I am living with MBC since 7/2017 + the 2 year ridiculous roller coaster of trying to get diagnosed correctly. Do whatever you do that brings you comfort and lessens anxiety.Wishing you sweet peace, comfort, love and many birthdays (consider celebrating every month 🌺). Mary

[Lavern2]

Hello I pray you are doing well I had a Lumpectomey and 8 lympnodes removed in June 2022. I was given a Zometa infusion and put on Letrozole. Had to delay radiation due to fluid build up an infection. The plastic surgeon didn't put the drain tube in. So my surgeon had to reopen the incision so the fluid would drain off my breast. After that healed I had radiation for 21 days that burned me raw under arm. I don't know if its from being on Letrozole or the radiation. But my energy level is very low and my skin in my chest has like freckles and get out if breath. I'm to see my oncologist this week for the first time since sugery. Hoping for the best. My first mammogram since sugery was clear thanks to God. I pray that you continue to heal. God bless

[Kahe in reply to Lavern2]

Hi Lavern, thank you for getting in touch, I hope that you continue to do well and positive news that your mammo was clear. I hope too that you will regain your nergy as your body gets used to the medication, best K

[Lavern2 in reply to Kahe]

Thanks Kahe. I am keeping you in my prayers

[mariootsi in reply to Lavern2]

Takes awhile to get energy back. Rest and take care of yourself.

[LDR1]

hi Kahe , just wanted to add to the great replies advising you not to panic as this small variation may not be significant. In a few months if you get scanned again and it does show progression, it’s not the end of the world. It just means Ibrance has run its course (and you’ve had a great run on it, 18 months already which is excellent) and you’ll be switched to a new medication. The new meds often quickly wipe out whatever progression was there, and you stay on them til they too lose efficacy. There are so many good options now that there is a long pathway ahead of you.

Progression & medication change can be quite disconcerting, but once you settle into the new option it’s not so bad. Hope that helps a little to reduce your fear about that scenario, best wishes 💜💜

[Kahe in reply to LDR1]

Hi Ldr, many thanks for your kind words and encouragement. I feel so much more upbeat after reading all the helpful replies I've received. I hope you too are managing well on your own journey, best Kahe