After 10 years without treatment (see below for clinical history), my husband has a recurrence: a very aggressive tumor on his clavicle bone. Started last November as a clavicle fracture. X-rays taken in December and early January showed a fracture that didn't heal and that the bone was dissolving. All the tests (bone scan, MRI, X rays of pelvis, spine and skull) were negative. He'd had a check up PET and CT in September that didn't show any new disease. Finally a bone biopsy at the end of January showed that the few cells that were non necrotic, were poorly differentiated NSC carcinoma. My husband has become progressively weaker with a mild anemia and very low iron. He also has a skin nodule on his pelvis and a couple on top of his shoulder tumor, probably skin mets. The oncologist (the same we've had for 10 years) recommended radiation as a palliative measure (already completed) but otherwise to do nothing else due to the weakened condition of my husband. He believes that chemotherapy will kill him or make him feel even worse with little or no probability of cure. Hasn't ordered other tests because they "would not be actionable". Yesterday he recommended hospice.
My questions are: do you have any different advice for this situation? Should we pursue a second opinion? Should we pursue further treatment (Husband doesn't want to go through any excruciating treatment if the possibility of cure is very low or none and I don't want to see him suffer unnecessarily.) Should we request another PET/tests?
Any word of advice would be welcome!
Thanks, Marilin
Previous clinical history: NSLC (adenocarcinoma and non differentiated cells) diagnosed on May 2005. Treated with carboplatin and taxol + an additional 3 cycles of taxotere in August 2005. Brain mets diagnosed on Dec. 2005 treated with WBR + stereoactic surgery (gamma ray) on February 2006 - No other treatment since, with good health and functionality until last year when he'd pneumonia (cured)
Reply # - February 26, 2015, 04:51 AM
Hello Marilin,
Hello Marilin,
I'm so sorry to hear of your husband's recurrence. It would be impossible for anyone in an online forum to say whether further treatment is appropriate. His oncologist, who knows his situation better than anyone, has made his recommendation based on access to all of his medical records and has had opportunities to examine him over time.Though there may be treatments available which could be tried, there is a point at which they shouldn't be, and your husband's oncologist feels that additional treatment likely would cause more harm than good.
You certainly could seek a second opinion, preferably at a center affiliated with a teaching institution, which could either find an appropriate treatment or confirm your oncologist's recommendation.
My thoughts are with both of you as you face this very difficult time.
JimC
Forum moderator
Reply # - February 26, 2015, 04:57 PM
What is the standard
What is the standard treatment for skin mets? My husband has received radiation to his shoulder bone mets, but nothing for the skin mets so far. Thanks.
Reply # - February 26, 2015, 06:25 PM
The treatment for metastatic
The treatment for metastatic cancer is generally systemic treatment such as chemotherapy or a targeted therapy when appropriate. Local therapy such as radiation or surgery is used only to relieve troublesome pain, prevent fractures in weight-bearing bones or relieve pressure a metastasis may be putting on a vital structure.
You can read about this principle in a GRACE FAQ.
JimC
Forum moderator
Reply # - February 26, 2015, 11:53 PM
How typical is it to have a
How typical is it to have a recurrence after 10 years? The oncologist thinks that this is the result of a group of cells that have mutated very recently (a full body PET and a neck CT in September were negative for any active cancer) and become very aggressive and they do not correspond to a new primary. Is this possible? Have any of the doctors here seen something similar? Also: these are undifferentiated cells, what is the probability that they may correspond to mutations that may be attacked by targeted therapies other than EFGR or ALK (they are negative for these mutations)? Thank you
Reply # - February 27, 2015, 04:17 AM
Hi marilin,
Hi marilin,
A recurrence after 10 years is unusual. As Dr. West has said:
”It’s also increasingly unlikely to see a recurrence of an old cancer as time passes, particularly more than 3 years out from prior surgery and/or other treatment. It does happen on occasion, but most lung cancer recurrences will be within the first 2-3 years, and after about four years, the likelihood of the old cancer recurring is about the same or less than the likelihood of a new cancer. So the routine scans that we often continue to do even after 4-5 years is as much or more to screen for a new cancer than expecting to detect a recurrence of a lung cancer treated many years earlier.”
You can read a post of his on recurrence vs. new primary here.
If trials which target particular mutations are under consideration, it may make sense to test for those mutations. Otherwise, the only mutations for which there are approved drugs are EGFR and ALK.
JimC
Forum moderator
Reply # - February 28, 2015, 11:12 PM
Hi Jim, T
Hi Jim, T
Thank you for your reply. I have read the standard FAQs and the general replies. I was hoping that given that this case is somewhat unusual (there is not another primary, the patient is a 10 year survivor without additional treatment after the first year, the mets cells are large undifferentiated but identified with NSLC) Dr West or an alternate could give me a reply from the point of view of their experience. I also have a question regarding skin mets (a couple have occurred on top of the bone tumor): what is their experience to treat them with Imquimor (alderan). Thank you.
Marilin
Reply # - March 1, 2015, 10:13 AM
Hii Marilin, I'm very sorry
Hii Marilin, I'm very sorry to hear about your husband's recurrence.
Since a recurrence 10 years out and skin mets are so unusual there's not going to be data or stats with any integrity to say how often it happens or a standard of care to point to. While no one online can say what your husband should do having an unusual situation does suggest that having a second opinion from a lung cancer specialist would be helpful. We'll make sure a faculty replies in the next day or two.
The following link is to a post written about 2nd opinions and all the many benefits without nothing to loose. http://cancergrace.org/cancer-101/2011/11/13/an-insider%E2%80%99s-guide…
All the best,
Janine
Reply # - March 2, 2015, 02:37 PM
I'm sorry that this happened.
I'm sorry that this happened. Recurrence after this many years is pretty rare. A second opinion is never a bad idea. The case can be reviewed by someone who does just lung cancer all day. You can get additional counselling from another perspective, and, at the very minimum, be reassured that you've done everything possible. At best, you might get another option.
Skin mets are treated like any other site of metastasis. If they hurt, it is possible to radiate them. But, in general, they are treated with the same chemotherapy (or not treated) as the rest of the spots of spread.
The probability of finding treatable molecular changes in poordly differentiated cancers is smaller than in pure adenocarcinoma. In my practice, I tend to get molecular testing on everything other than pure SqCC, but who to test is very controversial.
I've never heard of imiquimod being used to treat mets from lung cancer to skin, although it sounds like a reasonable idea for a clinical trial.