Spindle cell sarcomatoid

[Kt13]

Hi - my husband was recently diagnosed with spindle cell Sarcomatoid carcinoma. Stage 3B. His main tumor is large and growing rapidly (just under 10cm now). He is starting radiation and chemo because it is considered inoperable due to size and location. We are pursuing remote 2nd opinions at the top cancer centers and I’m looking into clinical trials. Is there anything else I can/should be doing? 

[LexieCat]

Hi, Katie, and welcome!

I had to look up that kind of tumor--apparently it's very rare and represents only about 1 percent of lung cancers. I'm not aware of anyone on this forum that has dealt with it.

Apparently it is pretty resistant to most conventional treatments. In your shoes, I'd do what you're doing--connecting with a top cancer center for treatment options and learning about clinical trials. 

I'm sorry about his diagnosis--lung cancer is always scary to deal with, but with a young family it's got to be even more difficult. I wish I could be of more help, but I'm glad you're here. Even if we haven't had to deal with the exact same kind of cancer, we might be able to help navigate side effects from treatments. And the forums are a great place for support.

[Jesse L.]

Just read your post and my support and care goes out to you. If I were in your shoes I'd be doing exactly as you. You just have to stay committed and in the fight...there's not a lot of choices. 

Whatever though you need to know that we are out here thinking of you and will help any way that we can. Sure, there's the tethnical side of these afflictions. But there is also the human side. Reach out for anything and we'll do our best for you...

[BridgetO]

Hi Kt13 and welcome.I'm sorry to hear about your husband's diagnosis. It sounds like your doing the right things in a hard situation.

Bridget O

[TJM]

KT

Welcome. I also have a rare form of lung cancer (Large Cell) and I do not believe there is anyone else posting who also has this flavor.

Regardless, this site has been a life saver for me. All of my treatments to date have been done on a lot of survivors so being able to bounce things off of fellow Lung cancer survivors has been invaluable.

You didnt give much detail but I know what my opinion was when my 4.5cm mass was found....take the vile thing out, even if it needs to be shrunken down first (by Chemo or radiation).

You might mention a treatment from a company called Novacur. Just had a phase 3 break through that sounds almost to good to be true. I'm going to ask my oncologist about it on my next visit.

I am currently NED and 14 months out from surgery. My biggest concern is treatment if I have a recurrence. So far my oncologist has not shared his thoughts on 2nd line treatment. Errrrrrr

Peace

Tom

PS The treatment I referred to is currently in a phase 3 clinical trial on all types of solid tumors.

[Qing]

10 hours ago, Kt13 said:

Hi - my husband was recently diagnosed with spindle cell Sarcomatoid carcinoma. Stage 3B. His main tumor is large and growing rapidly (just under 10cm now). He is starting radiation and chemo because it is considered inoperable due to size and location. We are pursuing remote 2nd opinions at the top cancer centers and I’m looking into clinical trials. Is there anything else I can/should be doing? 

I'm so sorry to hear about the rare type of cancer your husband has. Hope you will find best treatment plans. I received second opinions for my mom from MGH Boston, Mayo clinic Rochester and Mt Sinai NYC. I'm very impressed with the radiologist diagnosis from Mayo clinic. MD Anderson says my mom has to show up in person to get a consultation, no remote video call. I wished MD Anderson allowed, because I heard it's very good in lung cancer. Anyone has suggestions on lung cancer second opinions?