Recurrence or new incidence

mart62

I was 8 years out from treatment and was considered cured from bot cancer when another tumor was found in my neck 2 years ago. I have been on Keytruda for 2 years. The tumor has not grown but has also not gone away. I have lymph node involvement. Everything is what they call stable. It looks like I will get radiation and chemo now to move things along. Oh how I dread this. The radiation oncologist says I will get Proton Therapy and it wont be anything like i had before ( less side affects). What I went through before is like a bad dream. I am also not real happy with my medical oncologist . She is very low key and not very upbeat which I am not use to. My radiation oncologist is very upbeat and says he can treat this and it is doable. I am so worried about this I had to get treated for depression and anxiety. I was treated the first time at Johns Hopkins and this time University of Md. Md has Proton Therapy , Hopkins does not. I guess I am rambling . I could use some support and encouragment. Thanks for listening. Marty (female)

wbcgaruss

Hello, Marty, and welcome to the CSN H&N forum.

You are not alone, I was 5 years out and got tongue cancer. Thought I was clear but you never know. A lady in our local support was like you are, 8 years out and hers came back. This happens to a small percentage of us and I believe when you are that far past treatment it is many times not a recurrence but just a new or different cancer, not related to the one you had before. I think your doctors can somehow tell if it is new or a recurrence.

Was Ketruda used to hopefully get rid of your tumor or were they using it to just make sure it stayed stable and did not grow?

Anyway don't worry, you will do great and your oncologist is right, the proton therapy is much better and much more precise so there is less collateral damage to surrounding tissue. Link Below--

https://www.hopkinsmedicine.org/health/treatment-tests-and-therapies/proton-therapy

Your medical oncologist may not be upbeat but listen to her and see if she has the knowledge and can deal with your case well. She may not be so upbeat but is really good at being sure you get the best of treatment. Maybe there is another in the practice you can request if worst comes to worst.

You are getting the best care possible with the Proton Therapy, and if you have confidence in your care team just move forward and get this evil cancer evicted from your body. Stay strong and move forward and we are here if there is anything we can do to help. Don't let this worry you anymore it doesn't help, only treatment and action in this situation help. Be glad also we live in a time such as we do that they can treat cancer with so many positive outcomes. Cancer is no longer the death sentence it once was. Below is a couple videos explaining Proton Therapy--The proton therapy concentrates on the tumor alone and does not even pass beyond the tumor if controlled properly.

https://www.youtube.com/watch?v=FuD4z9H8Pcg

https://www.youtube.com/watch?v=a8b9jpkKNI4

Our Motto here is "NEGU (Never Ever Give Up)"

Welcome, and I hope this site meets your support needs.

Take Care, God Bless-Russ

mart62

I think they were hoping Keytruda would make the cancer disapear but settled for stable. Before radiation and chemo was decided I asked the dr what happens if Keytruda stops woking and her answer was " I dont know". Also I had a bad reaction to Cetuximaub and she is saying she wants to give that drug to me again. My treatment the first time was well documented and she seems to be unaware of any of any of this. My confidence level is about 3 at this point in her. I think perhaps we are mismatched but not sure how to change Drs at this point. Thanks Russ for responding . I am trying to not worry.

wbcgaruss

OK, Marty, you are stable now the way I understand. So Is there a real need to do anything at this point? Can you continue the Keytruda until a change occurs? It may not happen or it may. They could monitor you with CT Scans every 6 months or whatever way they are doing it now. I am just wondering why they decided all of a sudden it was time to take a different path with this rather than staying with Keytruda. I would guess long-term use of Keytruda can have its own side effects. Don't get me wrong although staying on Keytruda may be keeping you stable it would certainly be much better to have the cancer gone and not have it hanging over you that at any time it could be active and growing. And the availability of Proton Therapy is a fantastic option for you with much fewer side effects. As far as the Doctor you have that you don't particularly like it also sounds like she is not attentive to the facts of your case since you had a bad reaction to Cetuximaub and she is saying she wants to give that drug to you again. Thatn should be in your chart that you had a bad reaction to it. Also your treatment the first time was well documented and she seems to be unaware of any of it is a problem. You feel uncomfortable and mismatched. You are trusting this person with your life. I would say if it was me I would request another person in the same practice to take over your case, get an appointment and meet them first. If she is the only one in the practice then you would have to seek one from a different office. Is there someone in among the medical people you see that you can confide in such as your radiation doctor to ask their opinion of another doctor to see? Tell them you are not comfortable and would they be willing to recommend anyone. Also, look up doctors in your area on the internet in the same field of practice, there are doctor ratings and feedback now to help you choose one. I say all this because after treatment the cancer is all gone and everything is fine you will certainly be happy and everything turned out fine even though you didn't think your doctor was up to par. But on the other hand, if things do not go well or your cancer is not completely eradicated you will look back and say to yourself "I should have changed doctors when I wasn't comfortable with the one I had". There will always be that "what if" there. Whereas if you are comfortable with all your medical team and have confidence in them you can forge ahead and come what may. You will have to decide what is best for you this is just some questions and outside perspective here. I am not telling you what to do just asking questions and falling back on personal experience. Just a little note here about what some older guys I worked with said about doctors "They didn't all graduate at the top of their class". I am hoping you make some decisions and get the best treatment either way to deal with your situation and in the end are cancer free.

Wishing You the Best

Take care, God Bless-Russ

mart62

I am stable now and they scan me every 3 months. I will see the radiation oncologist Aug. 11th . I did confide in him that I wasn't happy with my medical oncologist. He said I could change DRs and he could refer me to someone else, however at the time I said no that I would give it more time. I am not one for change at the drop of a hat. When I see the radiologist on the 11th I am going to let him refer me. There have been some changes in my scans a cm here and there but she says thats ok . No new lesions . I really want this to be gone . It has not been easy living with the fact that the cancer is still there and could decide to grow at any time or metastasize. Thanks Russ I appreciate your interest.

wbcgaruss

Marty, once again Wishing You the Best.

If I can help in any way let me know.

Take care, God Bless-Russ

Diogenese

Equator.JPG

Hi Marty! 

This is my first post, so I hope it's relevant.  I’ve had Undifferentiated Pleomorphic Sarcoma (UPS, ha ha; brown must have done it to me), a rare and aggressive form of cancer, in my nose (Mohs surgery - Larry and Curley must not have been available) with a recurrence in a lymph node on my neck. After a right neck dissection that removed 66 lymph nodes, I was fortunate enough to be recommended for Proton Beam Therapy (PBT not to be confused with PBJs). 

I was sent about 200 miles away from home (wife has Parkinson’s, so that was tough) to see a highly recommended RadOnc associate with the Siteman Cancer Center at Barnes-Jewish Hospital in St. Louis. He warned me that if I agreed to the PBT; I should expect side effects from the treatment that would include, but would not be limited to red or tender skin, wound issues, dry mouth, pain, dysphasia, nausea, loss of appetite, weight loss and damage to the oropharyngeal structures.   I only experienced those I've highlighted.

The issues I experienced have either disappeared or don’t bother me (I drink a gallon of water a day).  I also suffered some damage to my right sternocleidomastoid, which makes it difficult to turn my head, particularly to the right.  Hopefully physical therapy will remedy this problem.  My dentist is attributing some dental issues to PBT as well. The snarl is gone.

While in St. Louis, I was blessed to be able to approximate my normal routine of walking five miles and working out with light weights before breakfast.  Other than that, my five weeks in St. Louis was similar to a vacation that was interrupted for a couple of hours every day by the PBT.  Hey! Summer visits to Disney World are interrupted for a couple of hours every afternoon by rain. 

My RadOnc told me my side effects were limited by the fact that I’m in pretty good shape for a 75 year old codger.  I gained a few pounds because I stayed at a Drury Inn and Suites that provided two all you can eat meals a day and I ate like I was concerned about losing weight.

The reason I’m sharing this is because I was super pleased by my experience with PBT and local HNCers are all envious.  I’d do it again in a heartbeat.  I also hope this alleviates some of your concerns.

I don’t think I can overemphasize the importance of everyone following all the medical advice we receive; such as don’t smoke, cover up when outside [(my vice - see my before (on an Equatorial beach) and after (at home on a humid 96 degree day, dressed to the nines) pictures 50 years apart], eat well, exercise, maintain a positive mental attitude, share experiences, share knowledge, help others, etc.  I’m very impressed with all the research you’ve been doing.  I’m a big fan.  I suspect you are already doing everything I listed.

I’m glad you are getting a referral for a new medonc from your radonc.  I’ve been very impressed with how closely they all work closely together at Barnes.  We’ve all heard how important it is to have a positive mental attitude, but that’s impossible if you have a 3 out of 10 level of confidence in your medonc.  When I was in the military I learned that a sense of humor helps, particularly in the most dire of situations.

I sincerely hope this has been helpful to you and to as many readers as possible.  I am a big fan of PBT; not so much PBJs.  I look forward to reading about your journey Marty, which I expect will be over smooth roads leading to a happy destination, the good Lord willing.

mart62

Dear Diogenese, I am actually looking forward to treatment as I think Keytruda has worn out its welcome . My medonc is apparently on vacation all week so I dont know who I will see this coming Tues Aug 8th. Of course I was not aware of this until yesterday. Just as well because I am going to let the Radonc refer me to someone else.

wbcgaruss

Diogenese pretty cool pictures and I am glad you got through all your treatments and are doing PDG (Pretty Darn Good)

Take Care, May God Bless & Watch Over You

Diogenese

Thank you wbcdaruss and thank you for sharing all you’ve learned and experienced. I realize how fortunate I am. My friends have been calling me the luckiest person they know, but they all agree that I typically prepare for success. In this case, it involves reading what you have to share.

May the good Lord bless you and look after you.

Diogenese

https://csn.cancer.org/discussion/comment/1707713#Comment_1707713

Marty,

Please be confident that you are making the right decision. Best of luck!

mart62

i contacted Hopkins and I have an appointment with my former radonc and care team in 3weeks. She reached out to me and it felt really good to hear from her. Having a PET this coming Wed. I have scanxiety . It is hard to change drs at this point as I want to have continuity care . I want this to be a smooth transition. I have appointments at both places . At the right time I will let Univ of Md go completely. I believe in my heart I am Making the right decision.