Kidney cancer is the focus here, but I can’t resist writing about the empowered and determined lung cancer patients who changed the rules–the NCCN guidelines–in treating their cancer. With this, there is support for treatment for their newly established metastases which was previously lacking. Translation for the patient was, “It’s come back, so just go home. End of story.”
What does this mean for kidney cancer patients, or for others? For that matter what does “oligometastases” mean anyway?
” Oligometastases are defined as 1–5 distant metastases that can be treated by local therapy to achieve long-term survival or cure.”
Earlier, some doctors felt that there was no reason to treat a patient who was initially diagnosed with metastatic disease. If the cancer had already metastasized, nothing that could be done, not even the removal of the primary tumor. Oddly enough, patients often got no treatment and the self-fulfilling prophecy worked again.
We kidney cancer patients know better. (My 10cm tumor and the lungs full of mets would have NOT been treated by many doctors.) Removal of the primary tumor can have real benefit, even when there is no treatment for the metastases.
Similarly, the emergence of mets post-surgery was also seen as a “game over” by many doctors. The “got it all” surgery that was welcome news was suddenly a forgotten phrase. How many sad visits a year or two after of misplaced confidence? Kidney cancer will come back far too often, suddenly emerging near the old tumor or in some of the favored spots. With kidney cancer, that is the lungs, bones, adrenal gland and the brain.
These new mets, generally in the area of the primary, are those oligomets. Hard enough to say, and harder yet to be told that the docs will do nothing–because the guidelines say it is not worth it. That was the situation for non-small cell lung cancer patients with new mets.
But these cancer patients were NOT having that kind of non-help!
They gathered all the data, showed the value of going after these mets and convinced the NCCN to make significant changes in their guidelines. Now doctors and the insurance people cannot deny these treatments on the basis of these guidelines.
Patients helping patients, patients helping doctors, patients helping create better guidelines, patients living longer…might be a trend we can emulate.
LITTLE BACKGROUND:
Keep in mind that most doctors and insurance companies want to use treatment guidelines based on some acceptable medical standards. One guideline comes from the National Comprehensive Cancer Network. This establishes the working rules for what kind of treatment or monitoring is thought appropriate for any stage of cancer. For example, the treatment for a Stage I tumor is quite different from that of a Stage IV tumor. There are guidelines for shifting to new medications, and for monitoring of primary tumors or mets after surgery.
Since kidney cancer most often metastasizes to the lung, I monitor some of their sites, and was thrilled to see this. Power to the patients, people!
http://www.curetoday.com/community/tori-tomalia/2015/03/empowered-patients-change-national-cancer-guidelines
I have been on Votrient since December 2014 with minimal side effects for metastatic renal cell carcinoma. However, I have been lethargic and a recent bout of mouth sores and a very sore throat. Taking Decadron for the pain but he has gained a lot of weight. I have been taking a Miracle Mouth Wash prescribed by my oncologist. When I started Votrient my measurements sere subcarinal node 35mm currently compared to 57 mm previously, right hilar node 3cm now 2cm, left hilar lymph node now 11x22mm previously 22×26, nodole of left major fissure now 1mm previously 4mm, right lower lobe nodule dimension of 9mm previously 15.6mm, the only one id did not shrink is the left paraspinal region at T2 now measures 3.5x5cm previously 13mm, Right Kidney now 8.3×9.1cm previously 9.6×10.2cm. He completed a two week course of whole brain radiation which and two week radiation to the left paraspinal region at T-2. I still don’t understand the grad 2/4 information. As well as the bioply of the lymph node was nondiagnostic and the mediastinoscopy with R4 lymph node biopsy showing no metastasis or tumor and how that plays into this renal cell diagnosis
My best friend’s mom just got diagnosed with Oligotastatic Breast Cancer two weeks ago and I have been trying to help them research about her condition. Her doctor said that she needs an aggressive treatment but they are still waiting for a second opinion from other doctors. She doesn’t want to get a mastectomy if it’s possible.
The most critical part of diagnosis with breast cancer will come from a biopsy and the genetic analysis of that biopsy. If a mastectomy is recommended, a more extensive biopsy will follow, and that can help determine the medication and use of radiation or chemotherapy to come. It is very wise to get a second opinion, and to have copies of ALL the reports, the pathology, the imaging and so on. Do not rely on the first parties getting those to the second doctor, but also insist on new imaging. There is a wide range in the skills of both surgeons and the oncologist, even in the more common cancers like breast cancer. Big point, however, is that there is NOT one type of breast cancer. Most women have heard of “triple-negative” or “BRCA” types, but there are likely 10 or more subtypes. Hope that your friend’s mother is being seen by a breast cancer specialist, and quickly by a plastic surgeon. It is possible to get a reconstruction at the time of the surgery, but a thorough look at the cancer type and where these mets are, how to remove/counter them is essential.