Enlarged Lymph Node Still Present After Treatment

I had radiation and chemo (1 dose of mytomycin and then capecitabine pills). My treatment ended mid-Sept 2022. I feel I faired pretty well compared to others situations I read about here. The first few weeks post treatment were a little rough with urination and bowel movements but saw improvement every week. Things in that area aren't perfect but I can deal with it for the most part.

I was stage 3C when I started treatment so it got in to a lymph node. My scans went OK and physical exams by the doctor are good but my last scan in March noted a few spots on my lungs they were going to follow up with a CAT scan in a few months. All of a sudden I am feeling some swelling in my right inguinal lymph node and went to the doctor. His physical exam of the anal area was still good but he ordered a PET and CAT scan. The scans show the spots on my lungs have gotten slightly larger. I'm very anxious now that it has spread to my lungs.

The tumor board meets on Wednesday to discuss next steps but wondering if anyone has experienced this. I was feeling really good and feeling like I could move forward with life but now I'm wondering if I'm going backwards. I'm feeling tired like I did before I started treatment or it could just be that this is weighing very heavy on me. I have no one other than the medical team to help me through this. I'm not sure I can go through more treatment and it is so hard to think about what might happen.

I'm sure I'll find out something soon and everyone is different but was hoping someone had a similar experience?

I have moments of despair where I am preparing for an end and then moments of disbelief and not my story. But I have a feeling this is going to end well. I have the worst luck and am now planning on selling what I have so the vultures don't get nice things for nothing. I'm not sure how much I'll want to fight it if in the end it will get me any way. I have always been very healthy and turning 60 in a month.

I'll wait for the doctor to call this week. The spots have increased in size since the prior scan and now about .25 to .5 inches - sorry for the American measurements but I can't think in millimeters! Maybe it is better than I interpret reading the test results but sounds like they will want to do a biopsy. Was that painful and how was it done? Under sedation or in the office?

Just when I thought I was through the worst part! I guess the results in the first 9 months after chemo/radiation are OK but then it starts up again. A friend who is a retired podiatrist mentioned that cancer is rarely linear so I guess my expectations were not realistic.

Thank you, Jim! That is comforting to hear. I'll try to remain hopeful. Surely brings you to a different place and appreciation of life and how much we take for granted.

Ha! I've been on a mission to downsize the last several years so going to continue on that mission - just in case! Either way, it is a win for me and someone else!

I also live in Ohio in the Canton area. I have a similar situation to yours in that my cancer had also spread to the inguinal nodes in my groin before it was discovered in Jan. 21 I completed my six weeks of chemo and radiation a little over a year ago and my first PET scan in Jan 22 was clear. Obviously that doesn’t mean the cancer won’t rear it’s ugly head again as it did in your case. It scared me to read your post. I guess I was naive to think it might be gone.

I’m wondering if I should try to find doctors at the Clinic. Is that where you are going? You mentioned something about a “tumor team”. I’ve not heard anything like that from any of my doctors, who are seem to be operating independently, which bothers me. I like to feel there was a more wholistic approach to treatment. That’s why I am considering traveling there..

To me one of the hardest things has been knowing who to believe and trust. For instance, no one offered me any advice on diet following the radiation treatment and even though I am now plagued with diarrhea and proctitis in both my anus and my vagina, not one of my 4 doctors is giving me any solid advice on how to address it. Taking Imodium daily doesn’t seem like the best idea. It’s hard to know when to try to go to a whole new group of people or even a new oncologist and when to stick w/the doctor who has been with you through the treatment. And it was only on this group that I’ve found out that even though my PET scan was good that it could well reappear in my lungs. That seems to be common, and yet no doctor mentioned to me!

Hi, If I’m reading this correctly you’re a bit behind me in this process. My treatments ended in in April of 2022. I had what is considered acute proctitus for a couple months following the treatment. Then I was doing well and thought maybe I was through that ugly stage. This past May is when the diarrhea came back and I started having bowel incontinence problems again, only to a lesser degree than what I had the first time. I did some research and found out that is called chronic protitus (caused by the radiation) and it doesn’t appear until 8mos to a year after treatment…sometimes it happens more than a year later!

Because of the lymph node involvement that side of my groin was also heavily radiated. Did they do that with yours or did they just radiate the anus. My cancer was found because the lymph node was biopsied. When they found it wasn’t a lymph cancer (mine is squamous cell) they had to search for the source, which turned out to be my anus. Also as a result of the biopsy and the removal of a couple lymph nodes in my groin I now have lymphedema and neuropathy in that leg. Just another life long side effect.

I’ve done a ton of research (I’m a retired research librarian) and I want to say don’t get too hung up on the stage. They stage cancers so the doctors have a guide for treatment. Stage IV indicates it’s moved to a more distant part of your body (that’s my understanding anyway). It doesn’t mean it’s not treatable or “liveable”. Everyday there are breakthroughs in treatments for this disease. Anal cancer doesn’t get the attention other cancers do, but statistics show more and more people afflicted by it thanks to the HPV virus, which no one even knew about when I was growing up (I’m 70). It’s now one of the more common concerns of my generation so there’s more research being done and there’s more treatments being developed. Not so long ago the “bag” was automatic if you had this cancer. Now the radiation/chemo treatment is the most common.

Here’s a hopeful story. My friend had stomach cancer and had to have 1/2 his stomach removed. They told him he had about 8 months. That was 17 years ago! Now he takes a chemo pill everyday. They didn’t even have that when he first got the cancer.

Everybody’s body is different. You have a team of doctors at a good hospital. I don’t think treatment would be much different anyplace else. I would say find out as much as you can and ask A LOT of questions! I would think that there would be a summary of your cancer teams discussions available to you. If they haven’t offered that I would ask for it. Every doctor I have writes a summary after a visit and it’s posted online. Be super proactive. I had to insist that I be referred for pelvic floor therapy. My rectal guy didn’t know much about it. I found out through my reading that it was available and recommended after this kind of treatment. I read about the stenosis that sets in and purchased dilators and then brought it up with my radiation nurse practitioner. (She’s the best medical person I have—and I think that’s partly because she’s a woman and can understand some of the problems that the male doctors don’t). I question my doctors about everything and sometimes I disagree with them. They’re not living in my body! They don’t like that I’m not an “easy” patient..but too bad. Doctors hate to be questioned in general. They’re in a hurry and they think they know it all.

What’s your chemo schedule now? Do you have a port? It may well be that the chemo will knock it out wherever it is in your body.

Someday they will look back and think these treatments for cancer are barbaric. Kind of like we look at the use of leeches in the past

We try to kill it by poisoning ourselves and burning ourselves. When you think of it, it is a bit crazy. But it’s all we have right now. We damage our bodies to kill “the bad stuff”. The treatment is almost worse than the disease.

Hang in there and keep me posted. I find talking with others going through this is one of the most helpful things in many ways. I’ve found out so much from reading about others’ experiences. Butt Buddies are the best! Have a glass of wine and a salad!! Live large. 😁

OT

Hi again, I went back and read through the posts and saw I wrote that I was diagnosed in Jan 21. It was actually Jan 22. The past couple years are all blended together since this started!