How to trust cancer is gone after surgery

M2021

I am 46 years old, and had Squamous Cell Carcinoma of the vulva and mons pubis. This was very large and in the center of my vulva. In attempts to shrink the tumors I had 5 cycles of chemotherapy ( last one was postponed due to having a cold ) after 5 rounds- which caused me so many problems, the tumors had shrunk and we could move forward with surgery. I had a complete vulvectomy and both sides of my groin lymph nodes were removed. I have an incision from one side of my pelvis to the other. After surgery, I had an incision open so have been dealing with packing that incision and trying to heal. I spoke with my doctor about a follow-up PET scan and he said the cancer was gone, no cancer in lymph nodes, negative margins, and until there was a reason, he would not do another PET scan. My question for everyone is how do you trust you no longer have cancer. How do you move past that worry? Any tips?

cmb

I wish that I had a great answer for you. But your question is one that I believe that anyone who has undergone cancer treatment asks. I've been on the Uterine Board here for a few years and there are a couple of points that seem to recur for many of us.

First, going through with all the recommended follow-up exams and tests. I was seen every three months for the first couple of years, then every four months and finally every six months in years four and five. My doctor doesn't order CT-scans or PETs routine, as some doctors do. But I have had a few over the years when I've reported as unusual symptom. Fortunately, none of them were cancer-related. The more often you get an "all clear" from an exam or test helps.

Second, the more time that passes without a recurrence, the easier it gets to think that this experience might be behind you. But I can't say I never think about cancer returning. It's just not as "front and center" as it was for the first year or two.

This particular board has been pretty quiet. So even though your cancer didn't originate in the uterus, please feel free to post any other questions you might have on the Uterine board. Often chemo, radiation and surgical side effects are similar across all the gynecological cancers.  See https://csn.cancer.org/categories/uterine

Rosie55

I just had radical partial vulvectomy , bilateral inguinofemoral node biopsy with bilateral sentinel lymph node mapping recently. I am unable to sit without great discomfort and burning. I really am new to this and scared of what is yet to come. I have no biopsy results as of yet. Was told to take Tylenol and soak in tub for discomfort. I have 18 stitches, that of course causes discomfort also. It’s been 9 days since surgery and 4 more days before I see my dr. I was diagnosed with squamous carcinoma of the vulva. Is anyone out there going thru the same thing? I could use someone to talk to. I’m 67 years old and would appreciate anyone else going thru this type of surgery with any insight. Thanks in advance.