Anyone ever decide against adjuvant chemo after resection?

Serena, I don’t think you insulted your doctors at all when talking about getting a second opinion. I think that is such a standard practice these days that doctors probably expect it. We did not opt for a second opinion because when we found out how many physicians were discussing John’s case, and came to consensus that surgery was the course of action, we felt this was as if we had 46 second opinions. I think if you were to ask Dr. Selby if they have a Chinese speaking oncologist at USC, he could point you in the right direction. I know that there are some at COH, but am not sure about our specific doc. Most hospitals are so willing to go the extra mile for patients and their families…ask about family services, translation services (not over the phone) and how they can best meet your needs. I’m sure that there are many volunteers that you could get to know, some many speak Chinese. We have been at COH since April and are so impressed at how they do everything imaginable to help you in your difficult journey. Ask about it at USC, and about their tumor board. They have a wonderful program. I am sure that this will bring your mom more peace.
Melinda

Serena, I am not sure if Dr. Chung at City of Hope speaks Chinese or Mandarin. I’m sure that you could find out. My question to you is why you would have an outside oncologist (one from COH) when you are thrilled with your surgeon at USC? I heard great things about Dr. Selby as well and I know that they have wonderful oncologists on board.
At City of Hope, and probably at most cancer research hospitals, each patient’s case is brought before a tumor board consisting, in part, of surgeons, oncologists, radiologists, etc. Each week, they discuss the best course of action amongst the 46 doctors on the board and that is the course of treatment that is followed. City of Hope was very fortunate to have Dr. Yuman Fong, from Sloan Kettering in NY, come to Duarte to be Chair of Surgery. He is internationally renowned and advised on my husband’s case which is being handled by surgeon, Dr. Singh, who also is wonderful.
Since Dr. Selby is also held in high regard, and USC also brings cases before their tumor board, would you not want part of his team to be treating your mom, instead of splitting two facilities? I am new to all this and not sure what the benefit would be other than proximity of the hospital and comfort level with a oncologist who may speak your mom’s primary language. I just know that I find great peace of mind knowing that if there is a question, our oncologist can pick up the phone or run downstairs to ask his colleagues what their thoughts are.

Mellina…I’m so happy to hear that your hubby will be done with the chemo soon and can begin to truly heal….physically and emotionally. A new beginning!

Julie T.

Thanks Pat. I appreciate the nod. It’s not always easy to push for what you need….but if you don’t, you could live to regret not speaking up. One of my favorite lines is, “If you don’t value yourself, how can you expect anyone else to value and respect you?”

Julie T.

Pat…you are absolutely right about the port and cleanliness when accessing the port. Before I left Mayo at my checkup, I talked with them about getting the port inserted. The RN on my team made sure….several times….that I knew that WHOEVER accesses the port….should use the cleansing antiseptic for at least a minute solid over the area. When I went to get the first chemo, I had to convince them to do it longer….as the chemo nurse was only going to do it for about 30 seconds. Then, I went into the hospital immediately after the first infusion….for blood clots, and they wanted to use the chemo port because of problems with my arm vein access, and again, I had to convince the nurse to do longer than 30 second. In fact, she had only done 17 seconds (yes, I timed her) when she said she was done…she was so SURE she’d done at least a minute. I told her that I’d let her know when the minute was up. GAH! My chemo nurses at the 2nd cancer center (I left the first one) , always did it at least a minute or more. It DOES make a difference.

I’d do the chemo again for the peace of mind.

Porter, Thanks for posting your response. I’m being impatient….I know. Yesterday, I had my first labs in about 30 days and I was disappointed to find that they weren’t where I expected and wanted them to be. Nothing was in a dangerous area, but a couple key tests were still below normal and the kidney function test had even gone further from normal. My oncologist reminded me that I’d gone through 4 month of pretty hard chemo and it is likely to take at “least” that long, if not more, to regain what I lost. So, I need to back pedal my expectations a bit. I had forgotten that you had told me that it was taking you a while also to regain your footings.

The question is…would I do the chemo (Gem/Cis) again, even knowing what I know now about it and the answer is definitely yes. I agree entirely with Porter, in that it has afforded me some peace of mind, knowing that I’ve done what I could, within the bounds of what was offered to me. In the case of my doctors, my Mayo oncologist gently said that if it were his family member, he’d push to do the chemo. My Mayo surgeon, on the other hand, not so gently said, “We don’t do this surgery without you doing the chemo.” In her mind, even with 2.2 cm clean margins, no lymph node involvement, and no vascular involvement and a T-2b staging, there was just too much risk of cancer cells floating in my system…..CC is aggressive and needs to be attacked as aggressively as possible.

I’ve found that a lot of people I know here where I live..my friends and relatives…., don’t seem to understand the cancer cells moving around in your body. They ask , “Well, didn’t they get it all when they did surgery?….why would you do chemo when they got it all? Of course, we know that it isn’t always the case…it can’t be seen during surgery, That’s why breast cancer now has a better cure rate…because they do adjuvant chemo now. Before that, more women had their cancer return. It isn’t 100% though. For us…the CC patients, the studies haven’t been done to indicate whether our adjuvant chemo does any good at all, and it’s an awful choice to make…to subject yourself to the side effects of chemo or wonder if the cancer will return either way you choose. Even in the best case scenario, it, chemo, takes a toll. I have to say though at this point in time, other than the blood counts that I’m impatiently waiting to get better, the majority of the side effects have either gone away, or lessened enough that they just don’t really bother. I am having to deal with the aftermath of a blood clot causing post blood clot syndrome….that is…swelling in the leg, which probably won’t go away. That was probably caused by the surgery to put in the chemo port….and wasn’t recognized by the old oncologist when I saw him about symptoms. (long story….see some of my old posts).

On August 1, I saw my Mayo oncologist and he commented on my excellent performance status on chemo. REALLY? I felt so crappy, that’s the last thing I’d expected to ever hear. But, in the grand scheme of things, I guess I hadn’t had the issues with neuropathy or hearing and the blood labs kept popping back enough to continue the chemo. In the end….I had a sense of relief that the chemo was over and a sense of relief that I was starting to recover and feel better. So, yes, I’d do the chemo again and as crappy as it was, I would go through it again if I had to. There is so little peace of mind with this cancer…..I want to grab whatever I can.

Julie T.

Hi Serena,

My husband Rob had a resection in May with clean margins and negative lymph nodes . We were in the same position you and your mom are. My husband also was concerned about all of the side effects. The oncologist left the decision totally up to us and we decided not to take chemo. Within less than three months he started to have pain in his shoulders and not feeling just right. His repeat scan ended up showing several questionable areas but the surgeon in Miami said he didn’t know what it was and that the scan was done to close to surgery and to repeat the scan in a month. He was not concerned about the shoulder pain. Well, within less than a month, Rob started to show increased symptoms of pain and ascites and ended up in the hospital for three days. While he was there he had a liver biopsy and it came back positive: this time with lymph node involvement. The cancer is now mets all over his liver . He is now taking chemo!

The decision of whether to take chemo is a personal one and every situation is different. Some people never have a recurrence and some go for years. You just never know. In hindsight we wish we would have chosen to take chemo post resection!!

Sincerely,

Mary Beth

Serena, Just saw that you are from Walnut. Did your mom get treatment at City of Hope?