Wow, I was so happy to see this forum.
My story starts in Nov 2020 when I felt a hard lump in my right groin. Within 2 wks I was in the doctor's office. He said to wait a month to see if it clears on it's on. Absolutely NO symptoms whatsoever.
In January 2021 I returned to his office and he ordered a surgical consult to biopsy and remove the lump.
Early March 2021 I had the biopsy and removal of the lump. Within the week I had the diagnosis of Malignant squamous cell carcinoma, unknown primary.
I am a retired nurse so knowing that the cancer was in the lymph nodes I knew it was serious but what got me even more worried was why we couldn't find the primary.
I went to GYN (even though I had already had my annual pap and exam), went to urologist to check my bladder, had already been to a dermatologist who said I had no lesions on my skin whatsoever. It was so frustrating. I met with the oncologist who was more worried about speech to text documenting than he was about a newly diagnosed patient with no idea of where the primary is.
No one, in all of those doctor's appointment checked my rectally. Not my PCP, nor any consultant.
My surgeon finally towards the end of March did a rectal exam and saw a very small ulceration that was suspicious in the anal canal. Voila-2 days later we had the primary. If it had not been for the surgeon, who argued with my surgeon about even doing the biopsy, I still wouldn't know the primary.
Anyway, I know my treatment will be chemo with radiation (5FU and Mitomycin C). I've fired the oncologist and am awaiting a meeting with my new oncologist.
Does it always take this long to get started with treatment? It's been 5 mos since I first noticed the lump.
Thanks for letting me join and vent. Any words of wisdom are greatly appreciated
62yrold Hi & a warm welcome! You’ll probably gather from others here that sadly your experience is typical & a correct diagnosis can take a long time. As you know, anal cancer isn’t in the top 20 of popular hits so it’s too often missed. Thankfully the tumour is usually slow to grow & treatment success rate is high.
Your professional knowledge will be a huge help in knowing what to expect & understanding the treatment plan when it’s in place.
If you click on members’ names, you’ll see a short bio many of us have written. There are some lovely people here so please join in the fun, ask silly questions or have a good old rant
x Toni
Hi there 62yrold,
I’d like to second Toni8776 in welcoming you to the online community.
The road to this diagnosis can definitely be a winding one that’s for sure sadly sometimes leading to later staging. Having said that we have many members here that have had lymph node involvement & have had great success with the chemoradiotherapy.
If you click on my username you can read a little about my journey there. I was fortunate to have seen a very astute GP that got me to a lower colon consultant within 2 weeks, a few days later I had a biopsy & 7 days after that I had my diagnosis. From first going to my GP to having a local resection to remove my tumour, it was probably around 6-8 weeks. I went on to take part in a clinical trial involving a reduced course of chemoradiotherapy due to a small section of my tumour only having a 1mm clear margin following the resection. I was given 8 weeks to heal from surgery before beginning my treatment.
I hope you don’t have to wait long for your appointment with your new oncologist & your treatment can get underway soon. Also please feel free to ask any questions you have, we have a wealth of experience here amongst us & please vent any time you feel you need to you’re in a place where we all understand what you’re going through.
Nicola
Hi 62yrold and welcome to the Group. Your story is interesting as you found the lymph node before you had any symptoms of anal cancer. This is quite unusual from other's experiences I have read about. I can see why the doctor thought to wait a month before further tests as lymph nodes can enlarge and then decrease is size. This is usually the result of infection ,as I'm sure you'll know anyway with your background. I was about 10 weeks from diagnosis to starting treatment but I did have symptoms of anal cancer, bleeding after a bowel movement and some itching along with pain in the back passage. I do hope you will get a start date for treatment very soon. The treatment is quite short, in the UK it's usually 5.5 weeks of chemoradiation. Please let us know if you have any other questions. Bev
