Hello,
I've posted here before about my aunt but have mostly reading the presentations during her treatment. However, I'm so confused right now, I would really appreciate some insight.
She has sclc, a big tumor in the mediastinum (5x6x7), which originated on the top of her right lung and a small one (0.6 cm) also in the right lung. She had three cycles of cysplatin + etopo and did a ct which showed stable disease.
On her last appointment her doctor was really confident that treatment was working. There were no more visible signs of the tumor (externally, follow up ct scan had not been performed yet), her lungs sounded perfectly health (her onc's words). All symptoms were gone ( throat and arm pain, shortness of breath). So, I'm truly confused!
1) can the treatment be working ( decreasing symptoms) and not working (tumor not responding by shrinking ) at the same time?
2) is there a second line treatment for sclc with any hope of reaching complete response? Her doctor is very positive (and she lives abroad, in Brazil, where doctors don't really tell you the stats), so I want to know is if we will be looking now to palliative care or can we have hope of greatly improving her survival?
3) is it possible for other cancers to be diagnosed as sclc? ( that's the impossible seeker on me). It's that it seem very rare to have a sclc pancoast tumor, and not responding to first line chemo, it places her in thus very small probability of lung cancers. On top of it she is doing SO well. Great appetite, no weight loss, no bloating, no pains (besides from chemo effects), blood tests are stellar, it just doesn't add up...
Thank you very much!
Reply # - December 31, 2014, 01:25 PM
Hi anac,
Hi anac,
It's great to know how well your aunt is doing, Congratulations to her and the family!
By visible signs are you saying another scan showed no tumors? Or are you saying there are no “clinical” signs? (clinical signs would be how she looks, feels and reports to her doc in the clinic office.)
It's very normal to do well after first line treatment with sclc even more so than other cancers. The reason for this is chemo works by killing rapidly dividing cells such as cancer and parts of digestive system (hence nausea). The more rapid the pace of the cancer (think sclc as opposed to other slower growing cancers) the more destructive the chemo. So it's very reasonable to believe the cancer is sclc and that it's responded very well to 1st line treatment.
Yes there are further options for treating sclc though further lines can be helpful in providing length and quality of life they unfortunately aren't usually as successful as first line. http://cancergrace.org/lung/2010/08/07/treatment-of-small-cell-lung-can…
There are many times when it's difficult to distinguish between one cancer or type from another, part of the cancer’s process while mutating is that the cells begin to look more like stem cells. Think of it as the reverse process of the development of an embrio into a baby.
Instead of stem cells turning into lung tissue cells, lung tissue cells begin to look more and more like stem cells. The more “undifferentiated” the less able pathologists are able to distinguish from where the cells originated. The upside is the pathologist is able to know when this is happening and often is noted in the path report from the biopsy. This would be a clue into a possible misdiagnosis. “...cellular differentiation is the process by which a less specialized cell becomes a more specialized cell type.” http://en.wikipedia.org/wiki/Cellular_differentiation
continued...
Reply # - December 31, 2014, 01:33 PM
...continued from previous
...continued from previous post
With a different diagnosis, nsclc, there would be additional options for treatment. Either way, sclc or nsclc there are further treatment options.
When in doubt ask the doctor. Is the doctor working with a tumor board, the more heads in the planning the better (a group of multidisciplinary doctors). If you’re still questioning seek a second opinion from specialists at a teaching or research institute. This is the time to get it as right as possible.
Again, I so glad to hear your aunt is feeling well.
All best,
Janine
Reply # - December 31, 2014, 02:37 PM
Thank you so much for you
Thank you so much for you through answer Janine! I will read it again to digest better all the details. I just want to clarify my post, the ct scan she has just done showed that the tumor sizes are unchanged from before treatment. On last appointment before scan the doctor found no clinical signs of the tumor (not externally visible anymore, pain gone, veins look normal now, no swelling...), but follow up ct was not performed so we didn't know about the tumor sizes.
. Her oncologist was thinking that we could be hopeful to expect one more cycle of cys etopo, and she was puzzled with this ct result as well. My aunt only talked to her over the phone, and will meet her in Tuesday. The doctor wants to check the images to compare tumor shape/position, and maybe will ask further imaging tests. I will ask for tge full biopsy report.
Thank you for giving more hope to me on New Year's Eve! I can't travel to Brazil now due to an immigration process and I want to take my baby to see grandma again.
Reply # - December 31, 2014, 06:20 PM
Hi anac,
Hi anac,
In addition to the excellent response Janine provided, I would just add that there are two ways to judge the effectiveness of treatment - the appearance of tumors on a scan, and the clinical evidence of how a patient is feeling. The fact that your aunt's symptoms are so greatly reduced is very good evidence that her treatments have been effective.
As far as the histology (type) of cancer, it is possible to have elements of both SCLC and NSCLC. In such cases it's typical to treat with standard SCLC chemo agents, since they can be effective against both types.
I hope that your aunt continues to feel well, and that the scan evidence catches up with how she feels.
JimC
Forum moderator
Reply # - January 1, 2015, 05:43 AM
Have your Aunt write down her
Have your Aunt write down her questions and concerns to ask the doctor when she goes in. Why did one CT show no tumor and now you say the tumor is there but it's stable? Something seems to be misunderstood and only her doctor that is treating her can verify this. Wishing her the best. Take care, Judy
Reply # - January 1, 2015, 07:04 AM
Thank you all for your
Thank you all for your answers! To clarify again, the tumors have always showed on CTs. Her doctor seemed to think they were shrinking based on clinical signs.
My aunt's first CT was done in August, treatment started October,23rd, and the second CT was done December 30. tumor sizes from first to second CT are stable. However, given how well she is doing (no pain, lungs sounding clear, etc,) we all expected tumor to be responding to chemo and shrinking.
She spoke on the phone with her doctor and the oncologist told her she needs to look at all tests to decide a course of treatment, but she will not continue with cysplatin + etopo anymore. I'm concerned about this, given that other treatments are not so effective. I also want to understand why can she feel so much better, but the tumor not be shrinking ( can it shrinking at a later cycle? Can it be swelling? Could it have grown in the 2.5 months between first CT and treatment starting so it actually is smaller but we don't know because there is no ct from October?)
All doctors that saw her ct (pull monologist) and the two thoracic surgeons that performed her VAT thought that she had a lymphoma. So the SCLC diagnose was a surprise for us. I have been wondering if it could be another type of cancer, or if the bigger tumor mass could present mixed characteristics, hence the slow response to chemo.
This showed me that she doesn't understand what is going on at all, and honestly, she doesn't want to know. She raised me with my mom, and I'm the only daughter, living abroad. I will be on FaceTime in her next appointment. I decided to not be online on all appointments to give her autonomy and privacy to talk to her doctor, what has been good since they have discussed personal things she wouldn't with me listening, but my aunt has perception bias and interprets all her doctor says in a very positive way.
I just want to get more insight before the appointment. She has been against looking for a second opinion.
Reply # - January 1, 2015, 07:06 AM
And I wish a happy fulfilling
And I wish a happy fulfilling 2015 for you all.
Reply # - January 1, 2015, 08:38 AM
I've edited all my answers
I've edited all my answers for clarification. I meant that tumor was not externally visible anymore ( it was before because it was pretty high up on her thorax, first doctor thought it was thyroid related from the x ray). The first follow up scan was done 2 days ago and showed tumor sizes are stable from August (treatment started at the end of October). Does it still means that she is reacting well to treatment? Fr Jim's answer I guess so, since clinically she is doing well.
Thank you all again!
Reply # - January 1, 2015, 11:01 AM
Hi anac,
Hi anac,
In answer to your earlier question, yes it is certainly possible that the tumor grew in 2.5 months but that her treatments reduced its size. In combination with her improved clinical status, that would indicate she has responded to therapy.
JimC
Forum moderator