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Change in treatment plan.

Change in treatment plan.

Posted by Samiam on Jul 25, 2020 10:02 am

It's been such an odd journey.
I had the consult with radiation and asked all the questions, challenged the need and was given all the reasons to make me  comfortable with the decision.
I went in last Friday and before they did the radiation set up, the radiologist came in and spoke to me at length. My primary care surgeon brought up the same concerns I did and  so the cancer panel was getting together to review my case on Tues. I could opt to do the set up or wait for the meeting . If it was still recommended it would be another covid test and another trek in for set up. It seemed very likely it would still happen so I did the set up. 
Thursday, I recieved a call to advise that the panel had decided that the possible risks outweighed any benefit I might get from radiation.
I am relieved, but after hearing all the reasons they originally thought it necessary, I find that I am nervous about not having having it. 
Apparently with this particular cancer being rare and hidden inside the ear canal, it is frequently misdiagnosed or diagnosed quite late in the game. Its unheard of to catch it so early and to come out of it this well. It's even rarer for there to be a conversation about IF rather than when radiation will happen. I am sorry to question this when I know so many would go to great lengths to be in my shoes.
So in a nutshell, I'm thrilled but nervous. Anyone else experience this?

Re: Change in treatment plan.

Posted by Lacey_adminCCS on Jul 27, 2020 3:23 pm


Great to hear from you again! It sounds like a thorough review of your individual situation was done to come to this conclusion. 

I can definitely understand why you still have some fears. 

My question is what type of follow up testing will you have going forward?


Re: Change in treatment plan.

Posted by Rayline on Jul 27, 2020 11:26 pm

Samiam‍ I am very happy that you are doing so well and that the cancer was discovered early. I hope you are able to enjoy the summer!

Re: Change in treatment plan.

Posted by HUART on Aug 2, 2020 2:47 pm

I had a change in treatment plan also...and it worries me. I successfully had my 4 doses of chemo with the first 'cocktail', and tho it left me very weak, I improved. But, after the 1st of 4 doses of Paclitaxil I ended up at emerge with a fever 2 days in a row, on the weekend, and a ct scan showed infection or inflammation in my lungs. My oncologist doesn't want me to spend the rest of my life on an oxygen tank so the last 3 chemo treatments were cancelled. I'm now taking herceptin and will start radiation in about 4 weeks, after the surgery for the double mastectomy heals. 
I can't help but worry... is it enough. And how will they be able to tell me I am cancer free when it had spread to my lymph nodes. I was told there is no blood test to confirm this... so I worry that I will spend the rest of my days worrying  about whether it has spread yet, or not.

Re: Change in treatment plan.

Posted by Cynthia Mac on Aug 3, 2020 9:03 am

And how will they be able to tell me I am cancer free when it had spread to my lymph nodes. I was told there is no blood test to confirm this... so I worry that I will spend the rest of my days worrying  about whether it has spread yet, or not.

HUART‍ , the cancer you have now is breast cancer, right? That’s the cancer that has made it to your lymph nodes. I’m going to tag ashcon‍ , Lianne_adminCCS‍ And Essjay‍ . They’ve had breast cancer (so has Wendy Tea‍ ) and they might be able to advise you better than I can. Based on my experience with my Dad’s lung cancer, you’re clear until something shows up on a routine screening. I hope that thought is one that will help you.
“When the root is deep, there is no reason to fear the wind.” - Japanese saying

Re: Change in treatment plan.

Posted by Lacey_adminCCS on Aug 3, 2020 9:13 am


I'm sorry to hear about your infection. Your lungs are definitely very important to keep healthy, but I understand your concern.

Given that you could not tolerate the full prescribed treatment ask to sit down with your doctor to come up with a survivorship care plan. This plan will include a detailed plan about your follow-up care. This is an opportunity to talk to the Doctor about possible increased follow up and what symptoms to look for. Read more here: https://www.cdc.gov/cancer/survivors/life-after-cancer/survivorship-care-plans.htm#:~:text=A%20survivorship%20care%20plan%20is,and%20ideas%20for%20staying%20healthy.

I would suggest posting another thread with subject "Anyone unable to complete chemo?" you are definitely not alone others have been in the same situation and felt uneasy also.

You are your own best advocate!


Re: Change in treatment plan.

Posted by ashcon on Aug 3, 2020 10:43 am


I think even if you had received the full course of treatment, you'd still be wondering "did they get it all?"and "what if it comes back?"
I know I wonder that myself. So you're not alone.
The suggestion from Lacey_adminCCS‍ about the Survivorship Care Plan is a good one.  It cannot guarantee that the cancer won't surface again, but it is an amazing tool of psychological empowerment and enablement that may help you move past, and through, this paralyzing "what if" fear. 
You may also want to request to stay in the care of your oncologist a wee bit longer after all your treatments are done before being handed off back to your GP. That may give you a little more peace of mind. I know it did for me.

The good news is that you still have radiation to go, and you have Herceptin in your arsenal as well.
(If it's any consolation, the cancer was in my nodes as well, but because my BC was triple negative, I don't have anything like Herceptin or other hormonal treatments to help keep the beast at bay. So I'm a little jealous that you have Herceptin at least!! ) 

How are your lungs doing? 
---- "Nothing ever becomes real till it is experienced." ----