NEED SOME HELPFUL OPINIONS

don09

Hi Everyone,
7 months ago I was diagnosed with 111B small cell lung cancer, through 7 weeks of radiation and chemotherapy my tumor shrunk over 50% which then enabled me to have surgery. Unfortunately due to the tumor location, this became no longer an option. I then continued with more chemotherapy for 3 weeks followed by a CT-scan with great results in the shrinkage and the Doctors have now diagnosed me as being in remission. As all of you know with lung cancer, there is a risk of it spreading to the brain if and when it returns, because of this one of the Doctors, is suggesting radiation to my head. All CT-scans, have revealed the tumor is isolated, and has not spread. From what I have researched on radiation to the head, as a preventive or cautionary treatment can cause more harm than good. Has anyone out there with SCLC encountered anything like this before as a means of preventative treatment?

Any info would help!
Don & Kathy

HeartofSoul

your question on researching
your question on researching radiation to the head as a preventive or cautionary treatment and that i can cause more harm than good for Small Cell lung stage 3B is a great question. I hope anyone in CSN who was faced with same scenario can provide what their experiences were and if there are studies showing outcomes.

stayingcalm

To radiate or not to radiate...
I'm having a hard time with this question. I have NSCLC, and I had WBR because I had brain mets - not as a preventative treatment. I'm absolutely happy with the results, although I do have some short-term memory "delay" and some hearing loss that I have been attributing to the radiation but may instead be from my first-line treatment of Cisplatin.

However, I don't think I like it as a prophylactic treatment, I think it would be better to schedule regular MRI scans and keep an eye on the brain rather than bombard it with the extra and possibly un-needed rads. This is the point of view I've been gradually coming around to. I would still champion WBR as a treatment for scattered brain mets, however

HeartofSoul

I researched other opinions
I researched other opinions for your question above and found the following responses from others with SCLC.

http://csn.cancer.org/node/187627
PCI- any advice? By Moonshine

My mom has ED-SCLC, but never had PCI, so I can't relate a personal experience. I will say that after reading postings for over a year from various individuals who have had it, the detrimental effects for someone as young as your husband are very limited. When they give PCI it is usually a total of 36 GY, given at 2-3 Gy's per session. It is considered being pro-active, and to me, worth the shot of eliminating any floater cancer cells that may have made it through the brain blood barrier, where the chemo does not go. Although, there has been some controversy lately about whether or not chemo in fact does reach the brain. I have also read of some cases where people develop brain mets even after receiving PCI. But, with PCI, I think what is trying to be accomplished is something of an initial best shot at containing the cancer blow the neck.



http://csn.cancer.org/node/187627
PCI- any advice? By Medi-2

Hi Moonshine, Well as you can see, I'm pretty normal (well I've never been normal, but close enough . My Rad. Doc. told me that if I had PCI it would cut my chances of getting brain cancer in half (and the brain is first place lung cancer likes to move to) and PCI is a walk in the park compared to brain cancer. That was good enough for me. I had already had a good dose of chemo and radiation for my lung tumor and I had a complete response; no cancer anywhere, so I went ahead and did it. The first day I thought I was going to die from a headache. I think it was mostly stress because the rest of the treatments were fine. It has been a few months short of a year since I finished and I am feeling now like I am almost full speed ahead. I have had short term memory loss but it is getting better too. I would recommend it (not the memory loss, the procedure). There will be hair loss and it won't come back for 2 or 3 months, but I think that is a small price to pay. Check out my page and see what I did with my radiation mask!
Good luck to you!!!


http://csn.cancer.org/node/187627
PCI- any advice? By Stayingcalm

PCI isn't a test, it stands for prophylactic cranial irradiation - radiation to the brain to keep the cancer from growing there. It's a "just in case" procedure, and I believe it can be done for both NSCLC and SCLC patients. It's not without issues, though, as Medi said, short-term memory loss is one side effect. I had WBR and I'm still struggling not to mix up my letters when I'm typing, and to remember what it was I was in the middle of doing five minutes ago. I do think it is getting better, though!


http://csn.cancer.org/node/187627
PCI- any advice? By MCBRIZ

My mother had PCI in Nov. 09 after being NED following her chemo regiment. So far so good -two stable CT scans and MRIs. (Next ones are in April). My understanding is that it's recommended for all SCLC patients who are NED after radiation/chemo. The hair loss has been hard, but she found a fantastic wig that is so close to her own hair style that if you didn't know, you couldn't tell. Short-term memory and focus has frustrated her, but nothing serious. She's now walking two miles a day several times a week. Like some of the comments above, the prospect of brain mets was more worrisome than PCI.


http://csn.cancer.org/node/187627
PCI- any advice? By PKAZ53

It will be six years this Wednesday that I completed my PCI and thus my treatments for sclc. Yea there are issues with memory I have to take my time and think things out, my spelling is not as accurate as it once was and sometimes I have a hard time recognizing and remembering people I have met. I was tested this past February for what's called "Chemo Brain" or "Chemo Fog " and yea I got it. I still work full time and use memo pads to write reminders to myself. I can agree the treatment that my cancer team suggested for me has worked out rather well, I have no regrets. --Keep Fighting and Be Well




Below is from a site called Lung Cancer Survivors WWW.Inspire.com

http://www.inspire.com/groups/lung-cancer-survivors/discussion/pros-cons-of-pci/

By JC
In regards to SCLC, it is an aggressive type of cancer. WBR is normal whether someone shows brain mets or not when treating for SCLC. Because once they start, they can multiply pretty fast. Also, just because someone has WBR doesn't mean they won't eventually get brain mets. It is most definitely preventative. Good luck and take care, JC


By CathyM
I was diagnosed with SCLC in March 2007. I went thru chemo and radiation. I also agreed to PCI in October 2007 and went thru this with no trouble - except losing my hair. I kept my hair during chemo, but lost it to the PC I. I was 55 during treatment and as the other poster said, age has a lot to do with how someone reacts to PCI. The first sight of reoccurance is in the brain. I've been NED for 3 years and 3 months, so I definitely think it was worth it.


By gpawelski
SCLC is intrinsically sensitive to chemotherapy (NSCLC is not). SCLC is one of the very few forms of carcinoma for which chemotherapy has some positive effect on survival. You'd think that if it is so sensitive to chemotherapy then why PCI? Well, SCLC is also very aggressive, tends to metastasize readily and grow rapidly. Median survival is on the order of 9-10 months, rare patients have long-term remissions (years).

Recurrences are much more difficult to treat. Brain metastases are common, hence the use of prophylactic whole brain radiation (PCI). PCI comes in safer doses with fewer side effects, but when to use it is controversial. Patients who are candidates for whole brain radiation are selected because they are thought to have limited survival times of less than 1-2 years, before the effects of radiation necrosis would show up.

Several studies in the '90's convincingly showed there was no survival benefit or prolonged independence in patients who received whole brain radiation therapy. The efficacy of this kind of radiotherapy has not been established. The most interesting part of the studies were the patients who lived the longest. Patients in the observation group who avoided whole brain radiation had an improvement in survival.

Large-molecule drugs do not cross the blood-brain barrier (BBB), their concentration in the central nervous system (CNS) is very low. The concentration of radiolabeled large-molecule drugs in the CNS is found to be significantly lower than in other organs, and thus undetectable in the brain, in the spinal cord or in any other site of the CNS. If they do not penetrate well into the CNS, it may represent a tumor 'sanctuary' site for these regimens.

It makes me wonder, if they radiate just the whole brain but not the spinal cord, how does PCI benefit the patient? Any theoretical cancer cells in the spinal cord would eventually infiltrate the brain.

The problem of penetration into the CNS is not as nearly as severe for small-molecule drugs. Large molecules cannot permeate through the narrow spaces, however, fat soluble (lipophilic) molecules can dissolve through the capillary cell membranes and are absorbed into the brain. A few brain diseases consistently respond to lipid-soluble small molecules.

HeartofSoul

staging for SCLC typically
staging for SCLC typically doesnt use Stage 1, 2 3, 4. you mentioned stage 3B IIIB for SCLC

For treatment purposes, most doctors prefer the 2-stage system that divides small cell lung cancers into limited stage and extensive stage.

Limited stage usually means that the cancer is only in one lung and perhaps lymph nodes on the same side of the chest. The cancer is typically confined to an area that is small enough to be treated with radiation therapy.

Spread of the cancer to the other lung, to lymph nodes on the other side of the chest, or to distant organs indicates extensive disease. Many doctors consider small cell lung cancer that has spread to the fluid around the lung to be extensive stage as well. About 2 out of 3 people with small cell lung cancer have extensive disease when their cancer is first found.

Small cell lung cancer is often staged in this way because it helps separate patients who may be able to get local treatments such as surgery and/or radiation therapy to try to cure the cancer (limited stage) from those who are very unlikely to be cured (extensive stage).