Facing Cancer Recurrence, PTSD & Acknowledging Mental Health

I was also awake when the port was inserted. The procedure went fine. I was in recovery for about an hour and then was sent home. About 6 hours later the freezing wore off very quickly and then I was in excruciating pain. I was not advised to wear an open button shirt and was in so much pain I was not able to change the T-shirt I was wearing until the morning of that first round of chemo. I could barely bend forward to brush my teeth. I mentioned this to the chemo nurse I she told me I should have been taking Tylenol as soon as I got out of the OR. Hopefully I am an exception cause as I said, the mastectomies and reconstruction was no where near as painful as the port. It took over a month for the incision to heal but I think that was cause my white blood cells plummeted after the AC. Once I got on neulasta I headed up within days.

@sushilady1- Welcome to Mayo Clinic Connect. Thank you for sharing your history. I'm glad that you found us. I ha d a much different experience with having my port placed. I was awake an had a bit of a shot of valium and never felt anything. Mine was placed the day before my 2nd chemo. What was your horrible experience?

I had 4 rounds of AC followed by 16 round of Taxol a year ago. While on Herceptin I had a double mastectomy with immediate reconstruction. I am still on Pertuzumab and Trastuzumab. I found the Taxol and the AC to be the worst chemo to tolerate. I honestly regret having the AC and Taxol and wish I just had the mastectomies and target treatment. Too late now. I had my port inserted 48 hours prior to my first round of chemo. That surgery was more painful than the mastectomies. My intention is not to scare you but rather be up front and honest. I wish knew what I was in for and was in a position to make a better decision. My suggestion is take an extra day or two to think about this. You are right the chemo is horrible.

Wow. I'm amazed that the very topic of concern for myself is the first one that popped up! I was absolutely certain God had healed me of triple-negative breast cancer of overlapping sites after eight rounds of AC and Toxil followed by a double lumpectomy and removal of seven lymph nodes. At my one year check-up, another lump was found in my breast so I had a mastectomy. Now my Medical Oncologist is suggesting five more rounds of Taxene (almost same as Taxol). Taxol made my lupus and Sjögren's flare severely and caused horrific bone pain. I'm so depressed I can barely get out of bed. I postponed my port surgery and am having a horrible time agreeing to this horrid chemo. Second opinions suggested a different chemo agent but my Oncologist refuses anything but CT. Can anyone relate or have any suggestions? I hate, hate. Hate having more of this chemo! I went to a Psychiatric Hospital but they wouldn't admit me because I wasn't Suicidal (yet).

@karen- your radiation will be in a different place on your body. Don't forget, everyone is different and reacts differently. I hope that your chin is raised a bit more. We're all pulling for you

@bjh. I'll be curious to see how you are doing.

Well right now I'm waiting on appointments with Mayo Clinic to get started with double temozolomide for 5 days then off for 3 weeks and when I start that regimen I understand that if my body can tolerate it I will remain on that regimen. If my body can't tolerate it then I may be gone sooner than I'd like. Doc is also going to have me try the Optune device by the end of February 2019. It may give me a couple more years on planet earth. Hopefully I will know more about all this after my appointment on January 25th.

I just noticed towards the last couple of weeks of radiation my sense of small was like....I could smell everything really well. You have to remember my head from my right eye to past my right ear was in the radiation path. So like I'd said...toward the end of each radiation treatment during the last two weeks of it at least I would think I smelled something burning and my mind told me it was flesh. I've never smelt flesh burn so I imagine it was my mind working on me.....

I will be starting radiation treatments in one week. I wonder if that's a common occurrence to smell burning flesh? I've not heard that before and wonder if I should prepare myself.

@bjh369- Do you stop the temozolomide in between sessions of treatments? Am I mistaken that you said that you would have to take it for life?