dear all,

i'm new here. here's what brings me here:

my sister was diagnosed in december/03 with stage IV SCC, maxilla (sp?); and had a left subtotal maxillectomy within 2 weeks after diagnosis (massive effects from the surgery), followed by 37 radiation sessions. before radiation was over, a new lump appeared on the other side of her neck. the same doctors who rushed her into the surgery the first time thought this might be a simple infection and did not run any tests until a month later. biopsy, MRI and PET scan all have returned positive, and they show *suspicious* new growth in the first surgery bed. the new lump has grown very quickly. they wanted to do another surgery on her. she went for 2nd and 3rd opinions and opeted for different doctors, hospital and approach. they started her on chemotherapy on tuesday. the idea is to see if that has a noticable effect on the new tumor and then decide whether to continue with the treatment. meanwhile, for the past few days, she's been having severe pain in the area of surgery and irradiation. (if i'm sketchy on details it's because my sister is in los angeles and i am in toronto and get my info second-hand.)

my family are told that there is nothing to do but wait. they are much happier with the new oncologist and the care that he gives my sister and the time he spends with her and them explaining things and laying out the data, etc. the problem is that there seems to be no conclusive data on whether the cancer has in fact returned to the irradiated area, although the tests and her pain point in that direction. the oncologist thinks chemo will have little to no effect on these areas, and he thinks that if the new tumor on the other side of her neck doesn't shrink by 20-25% after the first round of chemo, there will be very little else to do.

my sister is fighting and her spirit's up, but she is physically quite weak from the surgery and the long radiation. (she's been feeding through her stomach post surgery.) so, they're only giving her the chemo at 80% of usual dosage.

none of this sounds any good to me. having talked to an oncologist i know here and based on a bit of research, it is pretty clear to me that there have been many disasterous mistakes made so far, specifically by the first medical team who rushed her into surgery and radiation rather than trying chemo and radiation first to shrink the tumor to reduce the damage by the surgery itself. also, the fact that they did not take the new growth seriously at first has made me loose faith in the system altogether. though the attitude of the new oncologist seems much more acceptable, i worry that he too might be off track here and we might be loosing precious time.

i am not familiar with the american medical system and norms of practice. so i would very much appreciate any thoughts, suggestion and advice you may have in terms of what my family in los angeles should be looking into in terms of diagnosis and current treatment. thank you.

my good wishes have been with all of you since i found this board a few days ago.

be well.

gita

Good Evening Giha,

I am sorry about what your sister is going through. I'm sure it is frustrating for you to be so far from what is happening with her. I too would be troubled by the fact that they didn't take the new growth seriously. It sounds like she has found doctors that she feels comfortable with and that is so important.

The truth is this cancer can become a rapid grower in some cases. I will hope for her and you that the chemo will have a good effect.

Take care

Hey Gita,
Glad you found this board. I wish I would have found it before my hubby's surgery also. Dan developed a "swollen gland" about 4 months after his surgery, which his oral surgeon said was most likely an infection and gave him antibiotics. I questioned cancer (as I had gotton so much more informed from this board by then), and he said it was highly unlikely. To make a long story short, we got an second opinion 3 days later who took 2 seconds to look at a CT scan we ordered ourselves and felt his neck and said definitely cancer, get it out now!! We were shocked about the difference in approaches...and finally ended up with a great Oncology Team after his radical neck dissection since his oral surgeon couldn't get it all. I feel like his oral surgeon didn't really care and surely wasn't aggressive about treatment, although his cancer turned out to be very aggressive. Boy, do we live and learn! I pray for you and your sister and for healing.

God Bless,
Debbie

I think whether or not to do radiation first depends entirely upon where the location of the cancer is. As a part of a clinical trial, I had chemo before surgery to shrink my tumor and it did not work. My cancer was oral tongue cancer and radiation is not effective prior to surgery in that case. I have also been cautioned that any surgery or dental work after radiation is cause for major concern since blood flow is compromised. So healing may be a concern especially since she's already been through a major operation. We are not medical experts, so I would ask as many questions to your new team as possible.

If you have not already done so, please consider a multi-disciplinary approach at a major cancer center.

Welcome to the board. I am sad that your family is experiencing this disease. Please keep us posted.

Lynn

Hi Gita
Wish I could answer your question.. as far as I can see surgery is usually the first option followed by radiation.. I think you will find many on this site who only had the surgery and wished after they had known more.. All I can suggest is that you search this site and ask as many questions as possible.. Please keep us informed how it goes..
prayers.. love and Hugs
Helen

mark, debbie, lynn and helen,

thank you very much for your responses. i've passed on to my family some of the points you raised. one thing that came up in a conversation with my family tonight was how difficult it is not to be able to fully trust your doctors and to know what questions to ask. i'm very glad to have found this board and i've been reading and learning from the posts here. thanks again.

be well.

gita

Gita, I had a similar situation as your sister, Partial glossectomy, radical neck dissection followed by IMRT rad/chemo. About 3 months out of the first round of rad discovered a lump on opposite side, docs ar first though it was nothing, then after showing up on PET/CT thought it was infection, treated with antibiotics then followed another PET/CT, then needle biopsy. Biopsy proved positive. Second neck dissection followed by more IMRT rad/chemo.

Maybe the docs here are more aggressive, maybe its from not having to deal with HMO, but seems like the team in LA isn't being particularly aggressive in treating this second occurance. From what I've experienced, read and heard from other's experiences, in the case of SCC chemo is mostly used as an addtional therapy to help the radiation work on the cancer, not as a remedy by itself.

As far as PET showing possible new activity in the orignal area, that can possibly be residual from the radiation treatment, will show up as a hot spot for a few months. The attitude of "nothing left to do" if the chemo doesn't work is not acceptable, unleass there are circumstances that I'm not aware of.

Hope that your sister has good results, please keep us posted, we're all in this fight together.
Bob

Hello Gita, may I suggest DR. Terry Shibuya, he is in LA at UCI Irving. This is my "NEW" doctor and he is absolutly WONDERFUL. I just had a radical nck dissction, removal of 90% of my tongue, lymph nodes on both sides. I also had to have my jaw replaced for the cancer had spread into my jaw bone.This required they take the bone from my leg to rebuild the jaw and a skin graft from the same leg for the flap inside the mouth where the floor and tonue used to be. This my third fight with "C" Cancer. This was my last hope, without the surgery I would have only had 3 months. He and his team have done a wonderful job with me..My only regret, I didn't have him the first time I got "C" Cancer in 1989.. I would not be in the shape I am in, I honestly believe this. I am so so sorry to hear all this about your sister, she has been thru so much already, God Bless her and her family. Vicki

Gita, sorry for you even having to be here. The 1st thing I remember with my cancer was you have to stand firm and demand things. Second opinions, test and biopsys and anything you can think of you want done. Just 1 week after my surgery I started feeling a hard small knot in my neck. My doctor said inflammation didn't want to even look at it. I had to throw a fit, and if you ask my husband he can tell you I did. Long story short, 3 nodes positive. I am 3 years out this month, and I believe I am responsible for that. It's her body she knows it better than anyone, stand up and tell them what she wants done. Lots of Luck and L O V E!!!!!