My father was diagnosed with Stage 4 adenocarcinoma in early Oct/13: Here is his story:
His cancer was first discovered in Jan/13 and he was immediately seen by a thoracic surgeon to remove the mass via VATS (lobectomy:right lower lobe) He had some complications after the surgery- an empyema. After 2 thoracentisis' and weeks of antibiotics it finally healed up. He was sent home to recover and was not deemed a candidate for any other treatments as all pathology reports indicated no reason for it. In Oct he developed a cough, and his CT showed a new mass in the hilar. Hemoptysis was also a complication. He was immediately seen by a Rads Onc and received 13 treatments to the mass and lymph nodes.The treatments have significantly improved his cough and the bleeding. Now he says that there are only small traces of blood in his sputum. This is so relieving as his coughing was knocking him off his feet!
His PET/CT has shown very small masses in his bones (L4 and pelvis?). Fortunately, he is not experiencing any pain from this. We met with his Meds Onc who has suggested an observation period. She would like him to fully recover from the Radiation and to see effectiveness. He is a good candidate as he is young ,58 yrs old :), and she says he is relatively healthy. The reasons (from my understanding) is that as the bone mets are really small and he is not showing any symptoms/pain from these or anywhere else; and the lung mass has been treated,thus, there is no baseline to start chemo or any rush to start. Is this the right approach? My dad is by no means in a rush to start chemo, but we fear the "what if" factor; what if the cells in his bones decide to behave poorly and spread to other areas? A bone scan, EFGR testing and a CT are being arranged to provide a baseline and he will be seen in Jan/14. They have recommended LUAVPG as his first course of treatment. Is the observation period a good approach or should he start chemo now as his cancer appears aggressive?
xox
Reply # - November 21, 2013, 08:07 PM
Reply To: Wait and see or start?
Hi alexahat,
Welcome to GRACE. It's good to hear that your father's treatment has been effective and has provided some relief from his symptoms.
If the bone masses have only been seen on one PET/CT and have not been biopsied, it is not certain that they are bone mets. Even if they are, bone mets are usually only treated when they are causing pain or other symptoms. And it is not a concern that cancer cells in the bones will spread to other parts of the body; when lung cancer is stage IV it means that there are cancer cells in the bloodstream, which in this case may have formed masses in the bones.
The question is really whether or not systemic treatment is appropriate at this time, but since your father's cancer is for the most part stable, it is typical to continue to monitor his condition with scans. If progression is noted elsewhere in the body, systemic treatment may be appropriate; if it occurs in the bones and causes troubling symptoms, radiation directed at the bone lesions would typically be used.
I would also say that although this is stage IV disease, it has not necessarily shown itself to be "aggressive". That term would indicate rapid or widespread progression over a fairly short period of time, which is not what you describe. Many patients are able to keep their stage IV cancer under control for long periods of time despite slow progression, and I'm hoping that will be the case for your father.
JimC
Forum moderator
Reply # - November 21, 2013, 08:40 PM
Reply To: Wait and see or start?
Hi Jim,
Thank you so much for your reply! It is nice to hear some hope! We have asked the oncs to look further into the bone mets as my father was in construction and has had many injuries/hernias over the years.We are hoping that the PET is picking up anomalies. Unfortunately, the team is highly suspicious that the scan is showing mets as they were not there in his first PET/CT, and when I inquired about a bone biopsy the Rads dr said that the majority of the team was in agreement that it is in fact cancerous, so there was no need to do the procedure. I am hoping to prove them wrong ;)
Will the bone scan show more conclusive results? So is it fair to say, that as long as the source (the hilar mass) is under control from the radiation, the rate of it spreading is limited? What do you mean by stable?
My use of aggressive is due to its sudden reoccurance as we were told that he was all in the clear and the dr told us that there was a 5-10% chance of reoocurrance. As we all know, cancer has its way of playing a really good game of hide and seek. Maybe my use of the word is describing my emotions- lol!
Reply # - November 21, 2013, 09:41 PM
Reply To: Wait and see or start?
I would say that the findings of 4 new bone lesions on a PET/CT in a pattern highly suggestive of metastatic lesions is very likely to be correctly interpreted...though I'd be happy to be wrong. A bone scan isn't likely to be more accurate than a PET/CT for lung cancer. You'd really need to see the lesions improve or resolve in the absence of anti-cancer treatment to convincingly demonstrate that those lesions aren't/weren't cancer. Even a negative biopsy can't tell the difference between a lesion not being cancer and a false negative of just missing the area that would prove cancer.
In someone with a good performance status (fit, few or no symptoms) and a very small tumor burden, I and many other lung cancer experts are quite comfortable recommending not rushing into treatment. Our available treatments are not so plentiful that we need to use them at a time when they can only worsen quality of life (by causing side effects but not being able to improve cancer-related symptoms, if there are none). On the other hand, there is no reason to suspect that treatment opportunities will be missed and that patients won't do just as well by starting treatment at a time when there is more of a tumor burden than just treating subtle disease only detectable on scans.
Another advantage of waiting is that it can be very helpful to see how much or little the cancer is progressing over a fixed interval off of treatment. You can get a better sense of the underlying pace of the disease, which is a very useful piece of information, as described further here:
http://cancergrace.org/cancer-101/2013/01/16/progression-rate/
There's very little risk from not treating for 6-8 weeks, then reassessing how much or little things have changed. Is there a chance it will progress from minimal to extensive in a few weeks, without any gradual worsening of symptoms? Yes, but probably less than the risk of bad complications from treatment in a patient who didn't need it ASAP.
-Dr. West
Reply # - November 22, 2013, 04:26 PM
Reply To: Wait and see or start?
I'm wondering since he has adeno, was his tissue tested for mutations?
Take care, Judy
Reply # - November 23, 2013, 08:16 AM
Reply To: Wait and see or start?
Yes, The testing will take a few weeks the drs say as they are testing for efgr and alk. Here's hoping! However he was a heavy smoker for years on and off.
My dad has recently complained when he is more physically active, which is very moderate, walking around, he says his cough is stronger which causes bleeding again. The bleeding had decreased significantly with radiation and now that that treatment has stopped and the doctors would like to see him add some moderate physical activity, he is hesitant. Is this a possible sign that the radiation is not working? Or does his body need more time? We were told that the bleeding is not life threatening from the thoracic dr, is this true?
Reply # - November 23, 2013, 04:32 PM
Reply To: Wait and see or start?
There are dozens of factors involved in how people are doing; I don't think it's possible to infer how someone is doing or that the treatment isn't working because someone doesn't want to do increased activity yet.
We really aren't in a position to second guess the recommendations and reassurances of your doctor. That's just not something we do here, because we know far less about the details of someone's case than the doctors directly involved.
-Dr. West
Reply # - December 1, 2013, 07:04 PM
Reply To: Wait and see or start?
Over the last three days my dad's back pain has worsened. He is very uncomfortable. Now the tricky factor is that when this pain started, my mom rubbed some volteren on his lower back which helped the pain completely, which led us to think it's not the mets. He has had acute back pain for years from his 30 plus career in construction, so he is confused too. This was also ruled out by a nurse (at the cancer agency) who said that the pain would not have gone away with the ointment. Now, a few days since the volteren, the pain has worsened which we are now thinking the mets are misbehaving. He is trying to control the pain with ointments, walks, and takes Tylenol when needed. Any advice? I have asked my parents to give their meds onc a call to inform her of the new pains to get this reassessed.
Reply # - December 2, 2013, 10:12 AM
Reply To: Wait and see or start?
Hi alexahat, You're right. A call into the med onc is always the way to go when there is pain or any symptom that isn't explained or addressed. While you and I wouldn't bother going to a doctor about this type of thing it's important that a person with cancer has this addressed with his cancer care team.
I hope your dad doesn't give you or your mom flack about calling.
If you or your mom have the authority to speak on his behalf one of you could call. I find it very difficult for my husband to maintain his coping mechanism of denial when he has to discuss these types of things. :wink: strange sounding maybe but very true and significant.
Keep us posted,
Janine
forum moderator