March 22, 2018 at 11:53 pm #1294125
mazza55
Hi. I have NSCLC adenocarcinoma, diagnosed 2013 with 3.5cm tumour upper right lung. I am female aged 60’s, never smoker, previously well and fit. Right upper lobectomy, chemo (cisplatin/vinorelbine). 12 months later had recurrence in hilar lymph node. Radiation therapy. 4 months later spread to dozens of nodules in right pleura, hilar lymph node increased again, and it had spread down into diaphragm. Tested and found to be EGFR positive, exon 19 del. Started clinical trial (FLAURA study) July 2015. Great response. After about 6-8 months was getting “no measurable disease”. No changes, stable ever since then. But latest CT scan reports “sclerotic lesions in left lateral aspect of T4 and T5 vertebral bodies that have increased in size since scans in July and September 2017. No significant change since CT dated 21 December 2017. No cortical break, compression collapse or any associated soft tissue component.”
My clinician read this out to me as though it was unimportant, and continued straight past it. I asked what these sclerotic lesions mean. He said “possibly some small secondaries that have responded to treatment”. But it is the first time since I was diagnosed in 2013 there has ever been any mention of anything in my spine. I was so shocked I couldn’t speak, couldn’t think of a follow up question. Clinician said all good, scan shows still stable, and he was in a hurry so appointment ended before I could even collect my thoughts. Later that day I rang the nurse coordinator and asked for her help as I was quite distressed. She is going to check and get back to me. Now 4 days later no answer yet. I’m struggling a bit.
Are you able to shed any light on this kind of finding please? I hope this is ok to ask here. I don’t have copies of the ct scan reports mentioned above, except for latest one mentioning sclerotic lesions. Thanks in advance.
March 23, 2018 at 7:18 am #1294126
scohn
Hi Mazza 55.
Glad to hear that the osmertinib worked so well for you in the FLAUTA trial. I am sure the moderators will answer, but I just wanted to let you know some of my wife’s experience.
In the course of the last three years, my wife’s CT scans have occasionally shown sclerotic lesions of the bone in places we didn’t even know had cancer. The explanation from her oncologist is that often the bone will have sites at where the cancer resides and is too small to be easily detected. But, once the chemotherapy is successful in reducing or removing the cancer in those spots, the bone regrows into the places where the cancer had been residing, resulting in a slightly greater bone density – resulting in what shows up as sclerotic (i.e. more solid) spots. Basically our oncologist said that in conjunction with chemotherapy those sclerotic spots almost always suggest places where the chemotherapy has been working and the bone is naturally regrowing.
I hope you continue to have great check-ups.
Best,
scohn
Wife, lifelong non-smoker, dx 4/24/15 adeno NSCLC stage IV, poorly diff. 2 bone mets, 1 lymph node. HER2 Exon 20 mutation. 6x Carbo/Alimta – >50% reduction in primary tumor, lymph nodes, & bone. Alimta maint. not effective, tumor growth, new liver mets. 11/15 – Opdivo; Not effective-add’l growth. 4/16 – clinical trial drug, large reduction of tumor and mets. 11/16-main tumor growth, liver mets stable. 2/17-All Stable. 8/17- Add’l growth-off trial, 9/17 start Gemzar-large tumor reduction.
March 23, 2018 at 7:35 am #1294127
JimC Forum Moderator
JimC Forum Moderator
Hi mazza55,
Welcome to GRACE. Congratulations on the great response to therapy. I’m sorry that the bone lesion finding is causing you so much concern. Dr. Pennell has said this about sclerotic lesions:
“The truth is sclerotic lesions are about impossible to interpret, but most lung cancer lesions are either lytic or mixed lytic and sclerotic, so increased sclerosis might still give a clue that it is improved versus worsened. But for pure sclerotic lesions, it can be hard to tell much unless they are clearly getting bigger.” – http://cancergrace.org/forums/index.php?topic=11492.msg95007#msg95007
With this in mind, it may not be surprising that these lesions were not mentioned previously, as lung cancer lesions would be expected to have at least some lytic component. Sclerosis can appear when bone repairs itself and may actually make the lesion look larger, since the new bone appears bright white on a CT scan.
If you are still concerned and not getting satisfactory answers from your doctor, a second opinion might be in order. Getting a fresh set of eyes on your scans and other medical records may be all you need to provide reassurance.
JimC
Forum moderator
Jul 2008 Wife Liz (51/never smoker) Dx Stage IV NSCLC EGFR exon 19
4 cycles Carbo/alimta, 65% shrinkage
Tarceva maintenance
Mar 2010 progression, added Alimta, stable
Sep 2010 multiple brain mets, WBR
Oct 2010 large pericardial effusion, tamponade
Jan 2011 progression, start abraxane
Jun 2011-New liver, brain mets, add Tarceva
Oct 2011-Dx Leptomeningeal carcinomatosis; pulsed Tarceva
At rest Nov 4 2011
Since then: http://cancergrace.org/blog/jim-and-lisa
March 23, 2018 at 7:39 am #1294128
JimC Forum Moderator
JimC Forum Moderator
Hi mazza55,
GRACE member scohn responded to you while I was finishing my post, and I agree completely with his statements. If there ever was cancer in those bone sites (not at all clear that it was), then the increase in sclerosis could certainly reflect regrowth of bones in areas in which the systemic treatment was successful.
JimC
Forum moderator
Jul 2008 Wife Liz (51/never smoker) Dx Stage IV NSCLC EGFR exon 19
4 cycles Carbo/alimta, 65% shrinkage
Tarceva maintenance
Mar 2010 progression, added Alimta, stable
Sep 2010 multiple brain mets, WBR
Oct 2010 large pericardial effusion, tamponade
Jan 2011 progression, start abraxane
Jun 2011-New liver, brain mets, add Tarceva
Oct 2011-Dx Leptomeningeal carcinomatosis; pulsed Tarceva
At rest Nov 4 2011
Since then: http://cancergrace.org/blog/jim-and-lisa
March 23, 2018 at 6:18 pm #1294129
mazza55
Thanks so much scohn. That’s a very helpful explanation.
March 23, 2018 at 6:35 pm #1294130
mazza55
Thanks JimC. Really good info. With what you’ve said, and what scohn said, I guess that leaves me needing to ask my oncologist a few things, like:
Was there earlier indication of this in scans of last July, September and December, and if so why was I not told?
If it’s likely that small unidentified secondaries were there before I even started in the FLAURA study in July 2015, would it take that long for them to now appear as sclerotic lesions?
If these lesions are possibly due to something other than secondaries, what could that something else be?
So thank you both. I had trouble processing the info of “sclerotic lesions” as reported this week as it was such a shock. At least now I am armed with good questions that may get me an adequate explanation.
Thanks again!
March 24, 2018 at 9:52 am #1294133
JimC Forum Moderator
JimC Forum Moderator
Hi mazza55,
I think you’ve created an excellent set of questions, and I hope you have a productive discussion with your oncologist.
Please let us know if you have further questions or updates.
JimC
Forum moderator