Enlarged Lymph Node Still Present After Treatment
Hi: I was diagnosed with stage 3 anal cancer that had spread to left inguinal lymph node. The enlarged lymph node seemed to go away while I was receiving my treatment but 1 month post treatment I felt what I believe is a lymph node just below. I had 33 radiation treatments with chemo.
Obviously I will speak to my doctor about this but I was wondering if anyone who had stage 3 anal cancer with lymph node involvement had a similar experience.
Thanks
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I had stage 3 anal cancer with lymph node involvement on my right side 6 years ago. standard radiation/chemo treatment. NED since then. I didn't notice any enlarged lumps but it was there and the oncologists felt it and confirmed it. Even though my experience was different to yours I wanted to let you know apparently the radiation keeps working up to 9 months after you have finished treatment .
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No they didn't but they and I knew the anal tumour was gone by the end of treatment. I went for a check up 6 weeks after the end then every 2 months for a while, then 3 monthly for the first 3 years then 6 monthly alternately with my radiation oncologist and surgeon (even though I didn't have surgery) and every time they checked my lymph nodes and were happy so I guess they couldn't feel anything . I had a CT scan & MRI 18 months after treatment and then again at 5 1/2 years and both times there was no sign of anything in my lymph nodes and minimum scar tissue in my anus & rectum (the tumour was covering 3/4 of my anus and growing up into my rectum). I hope all goes well when you see your doctor again
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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?
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Hi: I am in a very similar situation: I have stage 3a squamous cell anal cancer that had spread to left lymph nodes. Had chemo-radiation (33 treatments) beginning in fall of 2021. Scans were good until late 2022 when then saw a few very small spots on my lung - too small to biopsy. They said they would watch these. In May 2023, a CT scan revealed a spiculated mass about 3.7cm which they biopsied. It cam back positive as squamous cell but they could not definitively say it was metastases because it can be difficult some times. PET scan reveled no other cancer. Just got discharged yesterday after have a lobectomy of right lower lung lobe. The thoracic surgeon does believe in was a metastases because it grew so fast. She said new primary mass in lungs doesn't usually grow as fast. I'm hoping she is wrong obviously and it was just chance that I got a new cancer because if it has spread it is only a matter of time that it comes back again somewhere else. Currently, there is no sign of a return of cancer to the anal region or inguinal lymph nodes.
I too am on my own. My advice is to take one step at a time. Don't think past the next appointment or step in the process. It is too overwhelming. Everything is beyond your control anyway. Just focus on the things you can control: eat good, exercise and do everything they say to prepare. I recommend the book: A new Earth by Eckhart Tolle to help deal with thoughts and rumination.
They will want to do a biopsy if the lesions are big enough. Also, if it is an isolated metastatic cancer on the lung, the treatment options will be surgery or radiation. Depending on your age and overall health etc., if the spots are small enough they may opt for 5 stereotactic radiation treatments. My mass was too big for just the radiation and because my overall health is good, the surgeon and other 2 oncologist I have suggested surgery and I was able to have the minimally invasive VATS. But, again, don't get too far ahead of yourself. Your mind can be your worst enemy. Just take step by step.
I would ask about online support groups for cancer patients. Here in Ontario Canada we have Wellspring which offers online support groups. There must be something similar where you are.
I am in Canada. I am a gay male 56 years old.
How big are the spots on your lung ? Where do you live?
Let me know if you have any other questions.
All the best.
Jim
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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.
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The biopsy sounds scarier than it is. They should give you something for pain and a sedative. I was worried about having mine, but didn't feel a thing other than the tiny prick from the numbing agent before the biopsy needle. For the next couple of weeks, there was just minor discomfort, assuming from the muscle the needle went through.
Don't be so despondent and I wouldn't be selling anything. The lesion sounds like it is small and they caught it quickly. Mine was the size of an egg by they time they cut it out.
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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!
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I had to re-read your response because it bothered me that in the back of my mind I thought I had read you recently went thru this but was thinking it was a while ago when I read it yesterday. I wasn't thinking clearly yesterday and really needed to reach out to you and tell you I am sorry and want this to go away for you, too. I know it is difficult and not having anyone adds to the stress. I'm usually not that insensitive but wasn't processing what I was reading.
I'm still waiting to hear the results from the tumor board and will go from there. I can't change it so waiting to get more information to see what the next step is. I'm thinking of you and praying all goes well.
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I finally heard back from the nurse and am being referred back to oncology for most likely more chemo. They weren't concerned with the swollen inguinal lymph node which I guess is good news. I have 2 nodules on each lung but they are relatively small so hoping they can blast that away with the chemo. Not sure what that looks like at this point but hope to find out in the next few weeks.
I now understand what they mean by "living with cancer". Just when you thought you were thru the worst and on the way to a "normal" life again and making plans, it rears its ugly head and puts you back in to limbo mode.
I guess all you can do is appreciate each day and live like you mean it! As they say....this isn't a dress rehearsal! I keep saying I'm going to do this or that when I retire in 5-7 years but need to just go do them now. I am tired of city life and was hoping to move to a smaller town further from major healthcare systems so may need to revisit that thought. I live in Cleveland with two excellent healthcare systems - Cleveland Clinic and University Hospitals. People come here from all over the world for treatments/surgeries so it is doable.
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Thanks for the update. Well, they will have to biopsy it; they can't just treat it with chemo without knowing for sure that it is indeed cancer. Make sure you ask all the questions you have with regard to what they say. Why aren't they concerned with the lymph node?, for example. Is it cancer free? How do they know? Also, if the spots are so small and they aren't concerned with the lymph node, why isn't stereotactic radiation or surgery an option? In my understanding, chemotherapy is usually the last resort for stage 4 cancer. Things aren't making sense to me. Are you leaving some information out?
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Thanks for the thoughts to think about. I'm in unchartered water and until I meet with the oncologist, I might not have all the details. The radiologist's report said prepare for chemoradiation. I know very little other than what was on the radiologist's report and what the nurse practitioner told me. I may not be getting all the details over the phone. So I'll have more questions now. Thank you!
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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!
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I have been going to University Hospital here in Cleveland for my treatment. I did well with the radiation/chemo last summer and up until a few months ago had no issues but now stage 4. I was very hopeful and now still reeling from the latest. I started chemo this week.
At UH, they have a tumor board which is where cases are brought to discuss to decide on treatment. The doctors involved in my care meet and put their heads together for best treatment is how I would describe it but since I'm not in the room at the time, that is all I can surmise how it works. It started when I met with the colorectal surgeon's biopsy and then after any tests where there was concern. I started to show spots on my lungs in March and at that time they took it to the tumor board and decided to get a full chest CAT scan in July but I started noticing the swollen lymph node in June.
When I started treatment last year, they had me meet with a dietician. She told me to eat a lot of protein, no caffeine, alcohol, no salads. I don't have the diarrhea or proctitis you mention. Everyone's treatment and body is different so it is hard to provide any relevant information.
Overall I've been happy with my care at UH compared to what you mentioned you are getting. I can't say what it would be like at the Cleveland Clinic or any other major cancer hospital. I had thought about transferring my care to MD Anderson but at this point it is hard to uproot my life and move my care when the protocol may be the same no matter what oncologist I see.
It is a journey and as I'm trying to get more comfortable with the latest news and find resources, it seems like there have been advances in care and I now have heard of 2 people living with stage 4 cancer but they did not start with anal cancer. One has lung cancer and I don't know what the other person has since we've only been introduced via a mutual friend so no deep conversation yet.
Do what you feel you need to do and explore all things to keep you well!
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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
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Everything is snowballing right now and I just can't deal any more. I have no family and no friends who want to get involved to get me thru this difficult time. I'm alone and just can't manage it all any more. I want to just stop treatment because I don't see the sense of not being able to have any quality of life and suffer thru a year or so of treatment. For what??? To end up in the same place?
My lease is up in 6 weeks and have no energy to go look for a new place. My last 3 rentals have been disasters when new tenants move in. Today my bathroom ceiling caved in from a leaky pipe. It is my only bathroom. Now I have to deal with repair people coming in making it inconvenient to just getting some rest and cleaning myself. I just can't take any more! I just want to find a cabin in the woods and die. I'm sick of it all and no one wants to help and in the end it is just my problem and I can no longer deal or try. To go back to work where they can use and abuse me again is depressing.
Yes, doctors are just all in a hurry and then say you are type A because you take an interest in your care and ask questions so you can understand and be educated about your care. I'm sick of them, too.
What can I do to just stop care and let it take its course? I have nothing to really live for any way and sick of being gossip to the "friends" I thought I had. They are quick to spread news but not to offer any help.
I look around and just want to throw away everything I have. It is of no use for me any longer and I no longer enjoy anything.
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