First of all I'd like to say that this site and its forums have been quite useful for me. Thanks to everyone who contributes and devotes their time to helping others!
My dad (72) was diagnosed in October with stage IB squamous lung cancer. Two weeks later he had upper right lobectomy. Histology read: poorly differentiated (G3) squamous cell lung cancer with massive necrosis. No lymph nodes involved. Doctors recommended adjuvant radiotherapy to the mediastinum, just in case and did 40Gy.
A post-surgery CT scan indicated suspicious bilateral adrenal masses 3.6 and 3.8 cm. The pre-operation scan indicated these adrenal masses as adenomas. Both pre- and post-operation CTs were done without contrast. (PET was not suggested by any of the doctors).
Now, 3 months after radiotherapy we did a CT with contrast which showed 3.3 and 4.8 cm masses in the adrenals. One of which has lower attenuation segments (the larger one).
Another important note is that over 1 year ago my father had an abdominal CT with contrast in connection with some kidney stones and the two masses in the adrenals were reported there as 3.2 and 4.8 cm adenomas.
My question is, is it more than likely these are metastasis? Especially given the CT performed over a year ago showed them too? Wouldn't they have grown considerably more, if they were? One oncologist advised starting chemo, indicating the lower attenuation areas were probably necrotic zones, but we will consult another one to get a second opinion.
I would appreciate any thoughts on the matter. Thank you once again.
Reply # - March 19, 2016, 07:19 AM
Hi volume,
Hi volume,
Welcome to GRACE. Of course, your dad's own doctors, with access to all the scan images and his other medical records, are in the best position to make a recommendation, but it certainly seems to be a positive factor that these masses have not grown in over a year. Any time you watch a nodule or mass over such a period of time, you expect that if it's cancer it will show easily measurable growth over that interval. On the other hand, I think it's a great idea to get a second opinion. An oncologist at a cancer center affiliated with a medical school would be preferred.
Of course the safest route (from the viewpoint of eliminating all possible cancer cells) might be to get chemo and see if the masses reduce in size, but chemo is not without risks.
I hope you have a helpful consultation with the second oncologist.
JimC
Forum moderator
Reply # - March 21, 2016, 12:34 PM
Thank you for your quick
Thank you for your quick response JimC!
We consulted another oncologist today and his opinion is that there is no reason to be concerned. According to the scan the lungs were completely clear and the adrenals showed nothing particularly worrisome. He referred to the tumors as adenomas, and recommended we consult a nephrologist. Still, he noted that such tumors may very well provide fertile ground for metastasis and therefore we should watch these carefully in subsequent scans.
I am somewhat confused, given that one oncologist was ready to start chemotherapy, and the other said that we had nothing to worry about.
It seems the nephrologist will have the final word.
I still think starting chemo just to be safe seems somewhat extreme in this case. Or it doesn't?
Reply # - March 23, 2016, 01:47 PM
Hi Volume,
Hi Volume,
It's difficult to say without knowing the patient in detail. This is a link to a discussion that can give you a good idea how specialists think through individual situations. http://cancergrace.org/lung/2010/06/18/adjuvant-chemo-stage-ib-nsclc-ca…
I hope this helps. I know how difficult to be in the position to want THE best for my husband with nsclc but no specific answers.
All best,
Janine
Reply # - March 24, 2016, 04:58 AM
Thank you catdander!
Thank you catdander!
Unfortunately since my last post, consultations with various specialists have confirmed adrenal metastasis. What is far worse is that even the initial CT done prior to the operation shows a suspicious region within the adenoma, which the radiologist failed to report.
Ultrasound has also confirmed a more accurate size of 5.7 cm and 4.3 cm of the adrenal tumors and we will be starting chemotherapy.
Thank you JimC and catdander for taking the time to respond. I will probably be back to share my dad's story, so that those who find themselves in a similar position would know what to expect. And of course to bother you with more stupid questions.
Keep up the good work, and stay strong!
Reply # - March 24, 2016, 07:31 AM
volume,
volume,
Good luck to your dad and to you, and please don't consider any question "stupid". We all start somewhere in our quest for knowledge about this awful disease, and we only learn by asking questions.
JimC
Forum moderator
Reply # - March 27, 2016, 12:24 PM
I'm sorry, based upon your
I'm sorry, based upon your description, it seems like he had a rather incomplete work-up and irregular treatment course.
It sounds like it would be prudent to perform a biopsy to determine whether the adrenal lesions are metastatic, and to perform a PET/CT to identify other potential areas of metastasis. As oncologists, we also routinely do a MRI or CT of brain to rule out metastasis there too. The treatment choice depends on the extent of the cancer. Hope this helps.
Reply # - April 1, 2016, 02:58 AM
Thank you for your response
Thank you for your response Dr. Ben Creelan.
Indeed the work-up and the treatment have been unsatisfactory to say the least. But I believe we are finally on the right track. Next week my dad is starting chemotherapy (still don't know the meds). A surgeon we consulted is strongly convinced that the lesions in the adrenals are metastasis and recommended we do several cycles of chemo, and then perform a PET/CT to see if the tumors are under control and MAYBE consider surgery (with numerous IFs as he put it). The oncologist also believes there is no real reason to perform any more scans now, and instead we should do a more complete restaging after 4 cycles of chemo.
I find it peculiar also that my dad's CEA levels are quite normal (1.75 with a reference value of 5) despite scans showing an active growing tumor in the adrenals. Another concern we have is the slight anemia my father has. The oncologist mentioned it but did not seem too concerned. Wouldn't anemia be an issue with chemo?
Reply # - April 1, 2016, 02:53 PM
CEA levels aren't a good or
CEA levels aren't a good or consistent method of determining nsclc activity. Anemia is an unfortunate side effect from chemo and slightly lowered levels are common in chemo used for nsclc but usually aren't cause for stopping or waiting to treat.
All best,
Janine
Reply # - April 6, 2016, 08:49 AM
I am back with more questions
I am back with more questions :)
My dad just had his first chemotherapy treatment today. What I got from the oncologists is that they are doing Carboplatin + Paclitaxel once every 3 weeks. Tomorrow he is getting a shot of "something to boost his leukocytes" - as retold by my father, since I was not there when he spoke about this with the oncologist.
What worries me is that 2 of the oncologists at the hospital where he is being treated insisted that this drug combination would not require any anti-nausea medications. They warned us mostly about flu-like muscle and joint pains. Adding he might get diarrhea.
Is it possible to go through chemotherapy without any anti-nausea medications? I asked explicitly twice, if we should get any Zofran or something of the sort. And I was told it wouldn't be necessary.
I have read that Carbo is less toxic than Cisplatin, but still.. no anti-nausea stuff?
Also would a 4 cycle plan be sufficient to see if this combination is having an effect?
Reply # - April 6, 2016, 09:58 AM
Hi volume,
Hi volume,
Each of these drugs can cause nausea and vomiting, so I'm not sure why you're not being prescribed something for that possibility, unless there is some medical reason to avoid an anti-nausea medication. Usually nausea is best prevented rather than treated (it's tougher to get rid of once it appears). If you can't get your doctors to prescribe it now, then I would say that you should ask again at the first sign of nausea.
If it helps, here are reference pages from Drugs.com on these drugs:
http://www.drugs.com/sfx/carboplatin-side-effects.html
http://www.drugs.com/sfx/paclitaxel-side-effects.html
Also, four cycles is pretty typical. There tends to be much less response after the first four cycles, and very little reason to go beyond six cycles.
JimC
Forum moderator
Reply # - April 7, 2016, 09:19 AM
Thank you JimC!
Thank you JimC!
After reading through the information on the drugs I did ask once again about anti-nausea medication and finally we got a prescription but we were advised to only use it at the first sign of nausea.
He was also prescribed folic acid. Does this seem reasonable as a supplement?
So far my father has had no side effects from the chemotherapy, and it has already been more than 24 hours since the infusion. Is it possible for side effects to kick in later than this?
Reply # - April 7, 2016, 02:42 PM
Hi volume,
Hi volume,
It's good to hear your dad isn't having side effects. It's very possible that the reason he not having side effects is the meds given with chemo usually include anti nausea meds and steroids. These meds usually help the person feel alright (sometimes really good) for the first 24 hours post infusion. However as the IV drugs wear off fatigue and nausea often set in and last 2 or 3 days. This is why you really want him to be on top of the anti nausea meds and be prepared for fairly extreme fatigue. Also subsequent infusions tend to become progressively more difficult. With luck your dad will be one of the lucky people who flies through chemo without much difficulty.
It's not unusual for those receiving chemo to take folic acid. From the website livingstrong, "Folic acid, also called folate and vitamin B9, is a vitamin essential to red blood cell production. Many people receiving chemotherapy for cancer experience drops in their folic acid levels and blood counts due to the effect of certain drugs. A low red blood cell count indicates anemia, a condition of reduced oxygen distribution throughout the body from the lower circulation of blood cells. Anemia can be caused by deficiencies in folic acid, several other B vitamins, iron and even protein. " http://www.livestrong.com/article/538148-folic-acid-chemotherapy/
All best to you and your dad,
Janine
Reply # - April 7, 2016, 03:11 PM
Hi volume,
Hi volume,
I'm glad your father has a prescription for anti-nausea meds. Although I hope he doesn't need them, at least it's there to be used if nausea sets in. It commonly takes two or three days for nausea to set in, so it still could arise. If it does, he should take the medication as soon as possible and note the interval between the infusion and the first signs of nausea. Then next cycle, start taking the anti-nausea meds an hour or two sooner, in an attempt to head off nausea before it becomes an issue. It also helps to eat smaller, more frequent meals rather than large meals. Bland food tends to be tolerated better, and a few crackers or something similar when symptoms begin may help prevent it from worsening. My wife's chemo nurse suggested taking a walk in the fresh air, and that seemed to work well to stave off nausea.
Folic acid (folate) is usually prescribed along with Almita in an effort to minimize side effects, but I'm not familiar with its use with carbo/taxol. As Dr. West has stated:
"I don't recommend folate supplementation outside of giving it with Alimta, but I don't have a problem with a low daily dose if people are inclined to take it. I'm not aware of any clinical evidence that it significantly worsens cancer outcomes in any setting." - http://cancergrace.org/forums/index.php?topic=10107.msg80572#msg80572
JimC
Forum moderator
Reply # - June 16, 2016, 02:47 AM
Hi, everyone! I hope you are
Hi, everyone! I hope you are all doing well. I am back with an update and some more questions.
My dad completed his 4th cycle of chemo and had a CT. So far he's been doing relatively well, the only real issue being joint and muscle pain. Doctors want him to do another 2 cycles of carbo/taxol after they reviewed his CT. It showed one of the adrenal lesions had shrunk to 4.4 cm from 4.7, but the other had gone from 3.4 to 5.8!
Is it really possible to have such varying effects? I mean one tumor shrinking, though only a little, while the other growing? What is more that same adrenal tumor was seen on an unrelated CT scan over 1 year ago (before my dad's cancer was diagnosed) as being 4.8 cm in size? Could this variation in size be due to something other than metastatic disease?
Another question which we are yet to discuss with the oncologists is what's next? After the 6 cycles I mean. What are the possibilities for my dad with his resected squamous lung cancer and semi-responding adrenal mets? Is it some sort of maintenance? From what I gather, squamous isn't really a good histology for maintenance. Or is it?
Reply # - June 16, 2016, 08:03 AM
Hi volume,
Hi volume,
Thanks for the update. It is possible to have what's called a "mixed response" to treatment, in which some areas of cancer remain stable or shrink, while others grow. It's hard to say what is going on with the adrenal masses, but it may be a good idea to get a biopsy of those presumed adrenal mets, as Dr. Creelan suggested. They don't really seem to have been affected by chemo (the change from 4.7 to 4.4 is pretty minimal and could just indicate a difference in the scans or measurement techniques used by the radiologist), so it would be helpful to know for certain whether these really are metastases.
If a decision is made to continue treatment, one of the most promising options is immunotherapy, as discussed here.
JimC
Forum moderator
Reply # - June 16, 2016, 08:22 AM
Hi volume,
Hi volume,
I'm glad your dad has been doing alright.
It's possible the 4.4/4.7/4.8 mass isn't cancer. The measurements could be just differences in reading even if it's the same person. Studies have even shown that to be true. However it is possible to have response in one tumor and not in another.
It's come to light after several years of maintenance treatments that it works best for those who would otherwise not keep a close eye on the cancer, i.e. scanning every 3 or so months. Most oncology specialists would agree that if progression is caught early then a break between 1st and 2nd line is fine. It's important to let the oncologist know of new or worsening symptoms and scan regularly. It doesn't really matter whether it's squam or adeno though.
I hope you dad does well for a long long time.
All best,
Janine
Reply # - June 16, 2016, 01:09 PM
Thank you for your responses
Thank you for your responses JimC, catdander!
Doctors here seem to be reluctant to do a biopsy. I have not mentioned it previously but this is all happening in a land far, far away in Europe, and maybe that is why the way things are done here might seem somewhat odd/different.
We consulted the best surgeon in the country, specializing in adrenal surgery, who stated that he would not perform a biopsy given the evidence (histologically verified primary NSCLC, CT scans, lesion size and growth), and recommended chemotherapy instead.
As for immunotherapy,I know that ramucirumab, pembrolizumab, and nivolumab are available, but I am not sure if our state insurance fund would cover these in my father's case (given that he is a 72 year old ex-smoker with advanced lung cancer).
Thanks once again for your responses and support!
Reply # - June 16, 2016, 02:23 PM
Being a LC survivor and
Being a LC survivor and having had a recurrence, I would never do any treatment without knowing if it was cancer or not. Not doing a biopsy doesn't sound reasonable to me unless that's the way they treat stage IV patients. I would insist on a biopsy of at least one of the adrenal glands. Take care, Judy
Reply # - July 11, 2016, 02:18 PM
cards7up, thank you for your
cards7up, thank you for your input! As I mentioned, the best specialist around advised against the biopsy and recommended chemotherapy until the tumors are under control and my father becomes eligible for adrenalectomy, Which unfortunately does not seem to be the case so far, since one of the tumors kept growing, while the other shrank insignificantly.
Unfortunately, as of today my father is in hospital due to suspected pneumonia after he suddenly developed fever and chills. His leukocytes dropped from 2.2 in the morning to 1.9 in the afternoon and he was admitted.
This is the pressing issue for the moment, but I still have not given up on his treatment and will continue to pursue all possibilities. I would really appreciate your opinions, as people on this forum know a lot about this dreadful disease and have really helped me in this battle.
So, here I go :)
Given the serious complications arising, would it be too bad if my father skipped the 6th cycle of carbotaxol? I fear it will only be worse after the 6th infusion, while the CT demonstrated a mixed response at best.
I am highly doubtful about the prospects of my father getting approved for immunotherapy treatment, so are there any other options? Would docetaxel be a viable option in his case? Or erlotinib?
Also what about SBRT? Is that an option for threating metastasis to both adrenals?
Than you!
Reply # - July 11, 2016, 07:14 PM
Hi volume,
Hi volume,
I'm sorry to hear of your father's suspected pneumonia. In terms of the duration of chemotherapy, many oncologists prefer to stop after 4 cycles, since the great majority of benefit occurs during those cycles, and additional cycles tend to add more toxicity, not worth it for any small additional benefit they may provide. When a regimen is well-tolerated and continued benefit appears after 4 cycles, some oncologists may continue.
Docetaxel is a drug that has shown activity in squamous cell lung cancers, but it can be quite challenging in terms of side effects. Dr. West wrote a post on the subject of using Tarceva for squamous, showing a modest, but real, benefit. There are some pretty encouraging results from immunotherapies, so it might be worth trying to get an approval for it.
Generally radiotherapy is not used in the metastatic lung cancer setting unless it's to alleviate or prevent serious pain or problems such as bone fractures, but exceptions are made when there are only one or two distant metastases. That might be a topic to discuss with your father's medical team.
JimC
Forum moderator
Reply # - August 17, 2016, 08:14 AM
Hey, everyone, I am back to
Hey, everyone, I am back to report on my dad's case.
First of all, my dad's pneumonia was caught just on time and he spent only 3 days in hospital.
The other thing is he finished all 6 cycles of CarboTaxol, and I am amazed by how brave he is. It is truly inspiring to see him fight this disease and not give up in the face of cancer. He quit smoking and follows the diet prescribed by doctors to the letter! Note to anyone starting this battle, be brave, listen to your doctor's and it is going to be OK! :)
As a whole, other than losing his hair, the occasional nausea and joint paint, chemo hasn't hit him very bad.
Unfortunately, his doctors gave him an ECOG 3 performance status, which I have seen as a hurdle in some clinical trials, should he elect to do any. Does performance status get upgraded or does it only go up in numbers? I don't think he is at 3, he cooks and walks his morning cafe/newspaper/shopping routine every day and doesn't nap more than 2 hours a day. Is performance status a factor in what treatments he can or cannot do?
I will soon be speaking to his doctors, as he is getting a PET scan in September, but I want to be prepared for that meeting since oncology here is more in the hands of patients than doctors.. you need to push your way to treatment and the more you know beforehand the better since doctors are always in a hurry.
And also, once again, thank you! You have all helped me and my dad more than you can imagine!
Reply # - August 17, 2016, 02:50 PM
volume,
volume,
Thank you for your kind words. Jim and I have benefited in the same way.
The performance status of a person isn't a static diagnosis but follows a person's abilitity levels due to changing health. Doctors and their teams who conduct clinical trials will evaluate appropriate candidates for a specific trial. To help understand your dad's oncologist's thinking it may be of help to take a copy of the ECOG performance status list, like the one below to reference during the meeting. Also having personal knowledge of how your dad performs on a daily basis can help his onc make the best decisions for treatment.
ECOG Performance Status
Developed by the Eastern Cooperative Oncology Group, Robert L. Comis, MD, Group Chair.*
GRADE ECOG PERFORMANCE STATUS
0 Fully active, able to carry on all pre-disease performance without restriction
1 Restricted in physically strenuous activity but ambulatory and able to carry out work of a light or sedentary nature, e.g., light house work, office work
2 Ambulatory and capable of all selfcare but unable to carry out any work activities; up and about more than 50% of waking hours
3 Capable of only limited selfcare; confined to bed or chair more than 50% of waking hours
4 Completely disabled; cannot carry on any selfcare; totally confined to bed or chair
5 Dead
*Oken M, Creech R, Tormey D, et al. Toxicity and response criteria of the Eastern Cooperative Oncology Group. Am J Clin Oncol. 1982;5:649-655. http://ecog-acrin.org/resources/ecog-performance-status
You're right in knowing you need to be prepared for the appointment. Bring a list of questions and take notes. Know as much as possible so you can be ready, we have lots of info. It's impossible for an oncologist to explain all their is to know so letting the onc know where your knowledge base is will allow the doctor to have an intelligent conversation without having to give lessons on cancer care. Usually oncologists welcome this type of dialogue.
All best,
Janine
Reply # - September 10, 2016, 12:17 AM
Hello, everyone. I am back
Hello, everyone. I am back with an update. My father's PET/CT results just came in. Unfortunately the news is not all too good. His right adrenal gland is indeed metastatic 55/48 cm with SUVmax 9.34. The good news is.. if there can be any in this situation... that there are no other lesions.
Does this SUV number indicate an aggressive and active cancer? Also given such a result after 6 cycles of chemo, is it fair to say that my dad isn't really responding?
I was also wondering what symptoms might we expect with such metastasis? Just pain or some hormonal dysfunction?
I am editing this, as I managed to get a hold of the head oncologist of my father's chemotherapy team. Her opinion was: no more chemo, the side-effects would be too much but we should act now before any symptoms appear. Her recommendation is either surgery or radiotherapy.
My dad doesn't want to do the surgery and the oncologist also mentioned radiotherapy is a better option but cyberknife is not really an option due to the lesion size. I've already booked 2 consults for next week with radiotherapy specialists. Is radiotherapy effective in these cases? I am aware a cure is not on the table, but at least stable disease?
Reply # - September 10, 2016, 06:55 AM
I would think it would be mm
I would think it would be mm not cm since the adrenal gland isn't even that large. "The adrenal gland weighs on average 4-6 g and measures 4-6 cm long and 2-3 cm wide." If it was 55 cm, then it would be 21 inches. And 4-6 cm is @ 2 inches.IMHO, I'd want further testing, a 24 hour blood and urine test measures the amount of adrenal hormones. Typically, the higher the SUV then the more likely it's cancerous, but not always. The rad onc is the one who can tell if SBRT can be used, so I'd wait to hear their opinion. What about opdivo?
Take care, Judy
Reply # - September 10, 2016, 07:18 AM
Hi volume,
Hi volume,
I'm sorry to hear of the appearance of the adrenal metastasis, but I don't know that you can say that is means that your father's chemo is not working at all. If the scan showed shrinkage or stability in other areas, then he may have had a "mixed response" in which some cancer cells respond and others do not. As stated in your earlier thread, it may also be true that the adrenal masses simply aren't cancer, which would explain their lack of response to chemo. But his own doctors have all of his information available, so their opinion is the best-informed one. I do agree that it's valuable to get more than one opinion.
As far as symptoms of adrenal metastases, the American Association of Endocrine Surgeons state:
"Sometimes a patient will have symptoms related to the growth of their adrenal metastasis, for example abdominal or back discomfort. Rarely, if both adrenal glands are involved with metastases, a patient may develop symptoms related to insufficient production of steroid hormones by the involved adrenal glands (adrenal insufficiency or Addisonian state). Adrenal insufficiency is characterized by weakness, low blood pressure, low blood sugar, low blood sodium and high potassium levels, and darkening of the skin." - http://endocrinediseases.org/adrenal/metastases_symptoms.shtml
Radiotherapy can effectively treat such metastases, and there is a recent trend in the past few years to give local treatment to such "oligometastases" (where the cancer has spread to just one or two locations outside the lung) with curative intent, in the hope that this is the only distant location where cancer cells are present.
JimC
Forum moderator
Reply # - September 10, 2016, 08:25 AM
Thank you for your quick
Thank you for your quick responses. Yes, my bad, its 55/48 mm. Which is more or less stable in size since the CT following the 4th carbotaxol cycle.
So far my dad has not had any symptoms, luckily, but it may indeed be wise to test hormones as well, it would do no harm I suppose.
As far as Opdivo is concerned, here, it is only available through an early access program at one hospital. We have a consult for next week there and I will ask about it. Otherwise the national health fund might finance some other immunotherapy drugs, but our local center is certainly not using these. Still, it won't hurt to ask next week about that option as well. Unfortunately, we can't afford to buy the Opdivo ourselves. For not immunotherapy looks like a long shot. State funding has its benefits, but as you can see, also its disadvantages.. slow adoption of new drugs, budget limitations, etc. Luckily, so far the treatment has cost us nothing, save for a few consults.
All that said, radiation therapy seems to be the easies route, and hopefully it will stop the lesion in its tracks. I just hope the side effects are not too severe, since the right adrenal seems to be pretty close to some important organs.
Once again, thank you, and have a great weekend!
Reply # - September 10, 2016, 12:30 PM
There are several
There are several immunotherapy drugs being tested. Those that have completed studies and are found to be effective are Nivolumab (Opdivo), pembrolizumab (Keytruda), and Tecentriq (atezolizumab). They have all shown to have efficacy in people with nsclc especially in those with at least a 50% expression of pd-l1 (mostly found in people with a nsclc with squamous histology).
So there's no one immunotherapy drug that is clearly better than another. If one is available then that would be the obvious choice.
Best of luck,
Janine
Reply # - October 5, 2016, 10:12 AM
Hello again,
Hello again,
I wanted to drop by to mark the 1 year mark since my dad's cancer was diagnosed. At the moment my father is getting SBRT to his right adrenal. Today was the 3rd visit out of a total of 6. Hopefully, that will buy him at least another year (or more!). If that fails, I'll just start asking around for immunotherapy. Best wishes to all of you!
Reply # - October 6, 2016, 04:34 AM
Hi volume,
Hi volume,
Thank you for the update and congratulations to you and your father on reaching this milestone. I hope that the radiation is successful, and that your next update contains nothing but good news!
JimC
Forum moderator
Reply # - October 10, 2016, 10:46 PM
I'm back here sooner than I
I'm back here sooner than I anticipated, since the radiation oncologists have asked my father to think about having his other adrenal gland treated with SBRT as well, even though the PET/CT did not show any metabolic activity. This seems a bit odd to me, but they said it would be wiser to do it now, when its 4.4 cm x 2.8 cm, rather than later, when higher doses would have to be used. Is such a "preemptive" treatment usual in this setting? Does metastatic disease tend to hop to the other adrenal?
It's the first time I've heard of such an option, even though I've read a lot of sources on the subject.
They told us to think about it for a month, since that is the earliest they can start.
I am worried that having more radiation to the abdomen might cause toxicities. So far my dad has had no side effects after 6 x 7 Gy to the right adrenal, but who knows what more radiation would do.
Reply # - October 11, 2016, 09:19 AM
Hi volume,
Hi volume,
There are extenuating circumstances for everything cancer but I'll ask an oncologist to weigh in here.
All best,
Janine
Reply # - January 20, 2017, 01:14 AM
Hello again! I've come back
Hello again! I've come back with an update on my father, and it's good news. The SBRT to his adrenal resulted in a "complete metabolic and partial morphologic response", i.e. it went from 9.3 to 2.6 SUVmax and from 5.8 to 4.3 cm in the biggest dimension. No other lesions detectable anywhere else, so woohoo! We will be celebrating his 73 birthday next week with big smiles on our faces.
I hope this small victory 1 year and 2 months after his diagnosis will bring courage and hope to all other patients and caregivers who read this.
Reply # - January 21, 2017, 05:59 AM
Congrats to your Dad and have
Congrats to your Dad and have a very Happy Birthday!
Take care, Judy :-P
Reply # - January 21, 2017, 07:50 AM
That's terrific news, and
That's terrific news, and thanks for sharing it with us. As you say, success stories help all who are battling cancer.
I hope your father and your whole family enjoy his birthday next week. Happy Birthday from all of us here at GRACE!
JimC
Forum moderator
Reply # - November 21, 2017, 01:58 PM
Hello to everyone. I hope you
Hello to everyone. I hope you are all doing well. Once again I seek some sound advice from this forum, as it has been quite helpful in the past.
It has already been 2 years since my dad's diagnosis and operation. Latest CT scans show he is still NED. Bloodwork is normal, lung function is normal (for a lobectomy patient at least). He did have a bronchoscopy because he has a productive cough but the biopsy showed no malignancy.
As in a few days I will be meeting with his oncologist at her request to discuss whether my father should go from a 3 month to a 6 month control with CTs. Is this the normal way to go 2 years following diagnosis? Also, wouldn't a PET scan be advisable at least once a year? I am really not sure if there is a protocol or are such decisions up to the medical team of the patient?
Reply # - November 21, 2017, 04:25 PM
Dr. West has this to say
Dr. West has this to say about follow up post curitive treatment for lung cancer.
"Physical examination by the physician and CT scan of the chest every 4-6 months for the first 2 years and then once a year.
"Recurrence of lung cancer tends to occur in the first 2-3 years after completion of treatment though in some patients the recurrence may occur later. Therefore in the first 2 years the scans are done more frequently. The reason only CT scans of the chest are done is that the common areas of recurrence are both lungs, adrenal glands (that are in the upper abdomen and included in a CT scan of the chest) and liver. The purpose of the CT scans of the chest is also to detect if the patient has developed a second lung cancer, separate from the first lung cancer. Any lung cancer patient has a risk of developing a second lung cancer though the risk is low. Both organizations do not specify for how many years should the CT scans be done though many doctors do scans for 5 years. A lot of patients ask for a PET scan. But there is no known value in doing a PET scan for routine follow up after completing treatment for early stage lung cancer."
http://cancergrace.org/lung/2008/08/10/fu-after-resection/
Since this post a study showed yearly scans are beneficial for those most likely to develop lung cancer and a previous lung cancer fits in that category. So once a year from past the 2 year mark. But I've always counted that from the last treatment.
Congrats to your mom, you and your family. I know how thankful you all most be.
Janine
Reply # - August 17, 2018, 12:28 PM
Hello to everyone again. I am
Hello to everyone again. I am back with an update on my dad, who is still feeling great, especially after becoming a grandfather!
He had his scan yesterday and the oncologist said it was perfect... but! wanted to have another CT in 3 months, instead of 6 months, due to one of his adrenals growing by 1-2 mm. This scan would be right on the 3-year mark from diagnosis and 2 years following the last treatment. Should we be concerned or is this the oncologists being cautious?
Also, given the previous SBRT to the adrenal, would a repeat SBRT be an option in case of a local failure? I just can't seem to find much information about subsequent treatments in such cases.
Reply # - August 17, 2018, 12:49 PM
Hi Volume,
Hi Volume,
Glad to hear your dad is still doing great. I believe repeat SBRT is still an option in general. You are right that it is hard to find information on it but I did find one 2018 paper on repeat SBRT to the lung, which is a different situation but it showed good results with not much pneumonitis:
Repeat stereotactic body radiotherapy (SBRT) for local recurrence of non-small cell lung cancer and lung metastasis after first SBRT
https://ro-journal.biomedcentral.com/articles/10.1186/s13014-018-1080-4
Did your dad end up having radiation to both adrenals already?
Reply # - August 18, 2018, 11:28 AM
Hey onthemark,
Hey onthemark,
Thanks for the paper, it was quite helpful, giving me hope we still might have options on the table, should the cancer return.
My dad did not have SBRT to the other adrenal since contrast CTs showed it to be a benign adenoma and it did not light up on PET/CT. So he only had SBRT to the right adrenal with no side effects.