Wed, 01/14/2015 - 12:26
Marie, I’m very sorry about your diagnosis. We have an oncologist faculty member who specializes in kidney and bladder cancers. If you have a specific question don’t hesitate to ask. (though read the guidelines first our onc can’t tell you what you “should” do but they can give info about what practices are standard or not so standard of care etc.) Below are links to our video and blog posts on the subject.
All the best,
Wed, 01/14/2015 - 12:39
Janine, thanks for responding. I'm really new to this site. To reach the oncologist faculty member who specializes in kidney and bladder cancer, do I just post another discussion like I just did this one, or do I go to one of the links you sent and post a comment? Thank you so much.
Wed, 01/14/2015 - 13:00
You can post a question right here.
Wed, 01/14/2015 - 13:18
In November I had a tumor removed from my distal ureter....surgeon able to do a ureter reimplantation, thereby saving the kidney. Also removed 21 lymph nodes; cancer found in 2. Staging is pT3bN2MX. CT scan of abdomen only taken in October showed kidneys and bladder clear. Initial visit with oncologist in mid-December. He recommended 6 rounds (3 weeks on/1 week off) of Cisplatin/Gemcitabine to begin after I recovered fully from surgery. Last week I had a CT scan to be used as a baseline before chemo start (this scan included chest, abdomen and pelvis). Tomorrow I meet with oncologist to get results of the scan and to discuss chemo. My husband says there's a good chance they removed all the cancer during surgery and that the scan will be clear - that the chemo is just to kill any microscopic cells floating around in my body. I'd like to believe this is possible, but with lymph node involvement (which makes it Stage 4), I'm fearful it's elsewhere. How is it determined that lymph node involvement is just regional?
Wed, 01/14/2015 - 14:07
I am not the GU oncology specialist of which Janine spoke (who may respond later), but I actually treat a lot of people with GU cancers as another of my clinical interests, and I've had many patients with ureteral cancers referred and treated by me over the years (relatively speaking -- ureteral cancer is pretty uncommon).
There aren't good studies of how to best treat ureteral cancer, because it's too uncommon to amass lots of patients and treat them all in a uniform fashion. However, the cancer behaves similarly to bladder cancer, about which we have some evidence that chemotherapy before or after surgery can improve the cure rate (there's stronger evidence for chemo before surgery, but the evidence for chemo after looks very similar, there just aren't big studies with the same quality of evidence). We see a regular stream of patients with your situation, and we generally do favor giving chemo in this situation, with the goal of trying to kill stray cancer cells that are invisible. Though your cancer is technically stage IV, that breakdown doesn't definitely reflect that patients can't be cured. I definitely feel it's reasonable to consider this a rather high risk situation, but not the same as having metastatic disease to the lungs or liver, for instance. Instead, it's appropriate to try to give chemotherapy to kill any potential remaining cancer cells after surgery has removed all of the visible disease.
It was fortunate that the surgeon was able to spare your kidney, because the chemotherapy can be damaging to the kidneys, and it's less of a concern to give the chemo to someone with two kidneys. Often we only see a patient with ureteral cancer after they have had a kidney removed, and we're left struggling with the question of whether to give the cisplatin-based chemo to someone with one kidney. I agree with the recommended regimen, though I might favor 4 rather than 6 cycles. It's a matter of judgment.
Wed, 01/14/2015 - 16:37
Thank you so much Dr. West for your response. It definitely made me feel better. Like I said, the October scan was just of my abdomen, and kidneys and bladder were clear. Scan last week included my chest...I'm anxious to hear those results tomorrow. I have only met with my oncologist once before, and at that time he asked me to make the decision on whether I wanted the chemo or not. I was surprised by that. When I asked why he was asking me, he said the chemo only gave me a 6% better chance of non-recurrence, and that some people don't think it's worth it. I asked him what he would advise his own wife to do, and he said "have the chemo."
What do you think of the necessity of having a port for 6 cycles of chemo? I've never had a problem with them finding a vein. I'd like to try it without a port, but I've heard those two chemo drugs can be pretty rough on the veins. Not sure it matters, but I'm 59 years old and in fairly good shape.
Thanks again, Marie
Wed, 01/14/2015 - 18:09
I don't think that combination is as much of an issue as those which include Navelbine (Vinorelbine), but a port does make chemo much easier, especially since Gemcitabine tends to be given more often than once every three weeks (for example, cisplatin and gem the first week, gem the second week, then skip a week before repeating the cycle).
Either way, good luck with chemo; I hope it causes you minimal issues.
Wed, 01/14/2015 - 20:35
I would say that it's very reasonable to try going without a port and seeing how it goes before resorting to putting in a port -- though it's not likely to be a big issue if you do need it.
I personally would suggest not getting hung up on the number, because I don't think there's nearly enough real evidence to provide one. However, I think there's good reason to believe that there is a high risk of recurrence that can be reduced in a meaningful way by pursuing chemotherapy -- even if it comes with no guarantees. I have consistently recommended it for patients in your situation, and I don't reflexively recommend post-operative chemotherapy to people.
Thu, 01/15/2015 - 16:25
Thank you Dr West and JimC. Had my appointment today with oncologist. Fortunately the CT scan was clear (except for "Chest: There is a spiculated left upper lobe nodule measuring 5mm on slice -536.5." There is more verbiage.). I'm not sure what that is, but doctor said a lot of people have nodes like that and it's nothing to be concerned about, just kept an eye on. Do you agree with that?
And I must have misunderstood before about 6 cycles of chemo. It will be 4, and he would like me to try it without a port. Also, the oncology nurse said there's a good chance I won't lose all my hair. It was a good day.
Thu, 01/15/2015 - 17:21
Sounds like a great day for you! I just had a port put in last week but was given the choice as you. I had gone through so much testing in the last few months that I felt like my veins were sore. You can always have the port put in if you veins hurt...it was a simple procedure.
Thu, 01/15/2015 - 21:27
I agree with everything you're saying. Small lung nodules are very common and just need to be followed to provide complete reassurance that they're benign when they don't change over time. I think 4 cycles is perfectly great, and I agree that hair loss is likely to be somewhere between none and minimal.
The potential nausea is the biggest issue. My personal approach is to split the cisplatin over more than one day, particularly when given with another drug that is administered over 2-3 days during a cycle. The available evidence is that giving the same overall dose of cisplatin leads to the same efficacy whether it's given all on one day or split over 2 or 3 or more days, though the most common approach is to give it as one big slug. Splitting it over 2 or more days (such as weekly with gemcitabine on 2 or 3 of the days each cycle) reduces the risk of kidney damage and reduces the nausea. I give less IV fluid before and after the cisplatin when I'm giving it as split dosing, so it's more of a 5-6 hour half-day (a few, actually) than a 9-12 hour days (most of the time is spent giving copious IV fluids before and after cisplatin). My sense is that my patients run into fewer problems with kidney problems or bad nausea/vomiting than they otherwise would with cisplatin administered as one big dose. HOWEVER, this is not the most common, standard way to give cisplatin, and there isn't some treasure trove of evidence to say my way is best.
Fri, 01/16/2015 - 16:20
Dr West -
My husband accuses me of always having to have something to worry about. He may be correct. Now that I know my scan is clear, I'm wondering if I'm feeling a false sense of security. When my urologist/surgeon told me my diagnosis, my first question was "am I going to die?" His response was to tell me that for my Cancer and stage the survival rate is 15-20%. After that, I stopped hearing much more of the conversation. My husband says most surgeons don't have the best bedside manner - too analytical.
Yesterday the oncologist told me I would have another scan midway through the chemo. Does that mean he expects something to show up by then, even though the scan today is clear?
I guess I'm confused as to whether I should be feeing positive or not!
Thank you, Marie
Fri, 01/16/2015 - 17:40
I believe your disease is curable, though there are no reliable, hard numbers for your situation. I believe chemo can increase that potential for cure.
It is not standard to get a CT part way through treatment with adjuvant therapy. Presumably, he is concerned that the risk is high enough to check after only 2 months on treatment, in order to not continue it if chemotherapy is not helping. This is in the realm of judgment -- it would be most helpful and direct to speak with your oncologist about his rationale for recommending a scan relatively early in the process. It is standard to check after two cycles when there's disease to follow, but not when someone is starting with no evidence of disease to assess.
Fri, 01/16/2015 - 17:54
Thank you Dr West. That is what is so confusing to me - why are we re-scanning in two months if the current scan is clear? It makes me think he is expecting something to develop during that short time. Do you understand why he thinks the risk is high enough to warrant this? Is it possibly because of the lymph node involvement? I will definitely ask him for clarification at my next appointment. In your experience, would you be conducting a scan after the complete four cycles of chemo, and then 3- or 6-month intervals thereafter? At what point of NED would scans stop or be much less frequent?
Fri, 01/16/2015 - 18:17
Dr West, I am very new to this site. I was just looking at the Faculty page. And I've been reading prior posts. You seem to be the only faculty member who responds. If you don't mind me asking, who is the GU Oncology Specialist you mentioned previously?
Fri, 01/16/2015 - 19:12
The follow-up scan interval varies from doctor to doctor and patient to patient, but it's typical to begin with a fairly short interval such as 3 to 6 months for the first two years, then lengthen the interval. You'd have to ask your doctor about his choice in your case, but there is quite a bit of room for individualization, as even the published guidelines state.
Fri, 01/16/2015 - 20:24
Dr. Monty Pal from City of Hope is a GU oncology specialist, and he sometimes responds. Many other faculty members are intermittent in responding, but it's true that I'm the one who feels most compelled to cover the questions coming in. We're trying to broaden the responses, but it's hard to get busy people to answer.
Sat, 01/17/2015 - 05:17
I understand. And thank God all of us posting on this site have you. It's a wonderful thing you do, giving your time to help us. Like me, I'm sure most everyone here are feeling desperate for answers. Thank you so much.
Mon, 01/19/2015 - 11:24
It's great to hear your news!
I wanted to let you know I sometimes ask other faculty to respond too though when I saw Dr. West's response I knew he'd give only the surest of info so I didn't request Dr. Pal to respond. It's difficult to beat Dr. West and JimC to the punch, they are quick, accurate and eloquent.
Good to know you don't need a port and will have 4 not 6 cycles. Much good hope for a cure. If you want or need to start a new line of questions start a new thread and I'll try to get Dr. Pal involved (he needs us ;) )
Tue, 01/20/2015 - 12:10
Thank you so much Janine - I can't express what everyone's kindness does to me (I really cry easily these days!). I would be interested in how Dr. Pal would respond to the various questions and comments I posted. Although I was comfortable with Dr. West's advice - he obviously is very knowledgeable. My oncologist at Siteman Cancer Center in St. Louis is also a Medical Oncologist, not a GU Oncologist Specialist. Is there any way to ask Dr. Pal to review the string of comments/questions in this discussion rather than posting the same information again?
Tue, 01/20/2015 - 13:50
I feel comfortable in saying any of our faculty oncologists here would agree that the more heads in the game the better. I’m sure if you’ve read much at all on Grace you’ve seen faculty disagree in strategy or have something else to add. It’s not because they aren’t practicing the standards of treatment it’s that so much with cancer is judgment mixed with the individual patient’s biology, needs and even wishes. I can’t be certain Dr. Pal will have time right away though I’d imagine he will if or when he can.
I can only imagine your stress. Several Grace members with cancer talk about holding their nerve when expressing how they move through living their life with cancer. Having cancer and having stage IV cancer is something only those who’ve have it can relate to so the more you put into words how you feel the better others can understand their loved ones.
Tue, 01/20/2015 - 21:52
Hi Marie! Hope you are well. I'm a medical oncologist with a focus on bladder and kidney cancer. The information that Dr. West has given you is right on the money. Ureteral cancer is quite rare, and we often extrapolate data from bladder cancer in this setting. In your situation, I'm in agreement with offering the option of chemotherapy as an "adjuvant" or preventative modality. Like Dr. West, I would typically offer a total of 4 cycles of treatment. It's challenging to offer you a precise number in terms of clinical benefit given the rarity of the tumor. However, I would take solace in knowing that (by using the chemotherapy) you're taking a pro-active approach at reducing your risk for tumor recurrence. Vigilant monitoring is a great idea. A scan at 2 months sounds totally reasonable. Good luck to you and always happy to offer further (informal) advice.
Wed, 01/21/2015 - 05:59
Hi Dr. Pal,
Thank you for responding. As I've said in earlier posts, the diagnosis of Stage IV has freaked me out. I was relieved that my CT scan a couple of weeks ago was clear. And I had a doctor explain to me that all "Stage IV" cancers are not equal in survivability terms, which gave me some comfort. It's definitely a difficult time.
Fri, 05/01/2015 - 12:43
I just wanted to give an update and get any feedback or opinions you may have. I completed my four rounds of cisplation/gemzar last Thursday. Initially treatment was supposed to be cis/gem the first week, gem only weeks two and three, and then a week off. I did not receive treatment number three in any of the cycles due to low blood counts. My oncologist seemed okay with just skipping those - did not reschedule. So each cycle I ended up having 2 weeks on, 3 weeks off.
I'm starting to get my strength back slowly. I feel very fortunate that I made it through the chemo without a port and without losing all my hair. I did have my share of problems: nausea, tingling in fingertips, infected vein, ringing in ears, mouth sore, muscle cramps. Other than that, it was a piece of cake...LOL.
I have an appointment with my urologist June 15 - I believe for a cystoscopy, but I'm not sure. My oncologist has scheduled me for a CT scan on July 22nd; appointment with him on July 23rd for results. Those of you who know my history, know that on my pre-chemo baseline CT scan, all was clear except a nodule on my liver and lung - which the doctor was not concerned with, said most people have those. I was surprised when he told me last week that the scan in July would only be of my abdomen.
Do I need to push for an upper body scan also? And is three months after chemo the normal wait period? Of course I'm anxious about it already....
Thank you all, Marie
Sat, 05/02/2015 - 05:24
It's good to hear that despite all the difficulties you were able to struggle through your chemo. Doctors vary in their preferences of scanning intervals. In your case, since all your visible cancer was surgically removed and your pre-chemo scan was clear (other than the nodules you mention), the scan schedule seems pretty reasonable, since you don't really expect anything to appear quickly after chemo.
I don't think it's unreasonable to ask for a chest CT as well, just to be certain those nodules aren't growing.
Sun, 05/24/2015 - 18:43
Thanks Jim. I finally got tests coordinated with my doctor. I will now be getting chest and abdomen CT scan in July. Your response made me call and request the additional scan. Thanks so much. Only two more months to worry! LOL