Results came back..

Hi everybody who reads this , I still have to get used to blogging on this site, trying to find out how it works😊. 

I had posted that I was waiting for a biopsy result. 
Dermatologist took a biopt from the inside of the anus but it came back negative on cancer. What was surprising because of the bleeding and the looks of it  

What is more scary is the thing I discovered through my vagina: a nodule at the other side of the scar tissue. The doctor was surprised ,

And they had no acces to the lump behind the scar. Although they could feel it underneath  

I was operated on an anal tumor in 2018. That left a scar that never stoppped bleeding. 

It seems that the biopsy might not have been taken from the thing, round and about 2 -3 cm, but only from the upper layer of the scar tissue , that is always a bit inflamed.


This is the situation now: sent back to hospital to have a reassessment of my situation and look closer at what is growing there ..on the other side 

I never had any postoperative treatment because the experts did not agree on wether it was nessecary in my case. It was very difficult. I took a 2nd opinion and finally opted for just 3 monthly examination of the anus. 

In any case, I am quite worried. 


 

Is there anybody who has experience with this kind of situation and how was it dealt with? I am scared that it is reappearence of the tumor, which, instead of pushing through the scar, took the easy way out to the other side.

I hope to hear something. I probably have to wait a bit before I will be taken care of because of waiting list even for urgent patients . Not very good at waiting🙈🤞🤞🤞

thanks lot for reading. I think of you guys as well and pray for the best and that things are well with you or as well as possible

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Thank you easterly, for advising me to post on the blog.
3 people like this comment
I live in Holland , near utrecht, so often when you sleep I am awake 😄
Hope my English is understandable. 🙏
Lucky likes this comment
Big hug to you Els, you've had an awful time. My cancer was missed at first too, and like you I had to go back and push. I hope at least you get some answers very soon. I will be thinking of you
Lucky likes this comment
Thanks a lot Jane. Hug to you too.
Lucky likes this comment
I'm glad you rewrote, as it makes it clearer to me. I'm thinking since it's close to your vagina, that you make appointment with Gynecologist, because they may have more ideas about how to go about this; and could be a simple answer or even a life saving answer.
I'm not at all medical, but use to schedule for both gynecology and CR docs, as well as other pelvic clinics. And then with my own dilemmas, I learned something from each specialty.
I hope others here, give you their advice.
More Hugs!
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That is a good idea! I will contact gynsecologist🙏🙏
Lucky likes this comment
Hi Els, thanks for sharing some of what you’re going through...I will pray it’s not a reoccurrence as well. But I do think you should act quickly to be seen by the right people...I really think a gynecologist should be helpful as Easterly had pointed out. I assume a scan will be necessary given the location you describe. Keep on advocating and keep pursuing this is my best advice. If it is cancer you can do the chemo / radiation this time around like most of us have done. Big hugs to you 🤗 and please keep us updated.
Hi Kim , thank you! Too bad the most scribe time here is when I should sleep 😊.
As to what you point out , yes a scan seems logic . Acting quickly maybe not so. Holland is not so well organized for anal cancer. And hospitals are understaffed. But they do the best they can. I will indeed contact a gynecologist as well as easterly also said. Although this goes not along with speed, it is even worse. 😬 Maybe my generalist can help me out who knows.
Hug to you too!
Lucky, Kim like this comment
Hi Elisabeth. Here you can find US guidelines for anal cancer diagnosis and treatment: nccn.org. You may have the different ones in your country. It's recommended to proceed with chemo and radiation even with a stage 1. I would request pelvic MRI and PET/CT scan. In addition, you may consider PAP smear for your cervix, and if it's abnormal, request a biopsy. Big hugs!
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Hi Olga, thank you very much! Very helpful!
I feel a bit overwhelmed with all the good advice and support. In my country I it is less active. Feels very good. 🙏🙏😊
I will read the guidelines
Hope you are fine. I still have to read again your story.
3 people like this comment
Hi Els! Welcome to our little family!
Waiting is the worst but you must be your own advocate...especially in a situation like this!
I must tell you though...if it does come bck as cancerous, please dont hesitate to have the chemo/radiation protocol that we have opted for. It is really the best thing going for this beast and does a pretty great job of beating it most of the time. Its a brutal but short treatment that does a pretty good number on you but really is your best option. We will hope and pray for the best and quick answers as well.
Take Care!
Sara
Thank you Sara. I like seeing you express your opinion. I saw my father die of the same cancer but in esophagus and it looked more like the chemo radiation had lulled him. I was young and it scared me a lot . Don’t know if I can do it. I think you are all very brave!!
Lucky likes this comment
Not so brave Els...but I liked my odds:)
many advances have been made in cancer treatment. Awful to watch a loved one die...I lost my Dad to cancer as well about 30 years ago. It is scary. We are here for you and hoping for the best. Lots of hugs!!
Lucky likes this comment
Hi Sara , yes, my dad in 89. I am sad you had to go through all that and now yourself. Don’t say you are not brave, you are!!
Sara, Lucky like this comment
Hi Els, welcome to our blog. I am glad u found this site. The members here are awesome and brave. I hope it turns out to be nothing. However, if it is a tumor, getting it early is the key. I was scared shitless before chemo/radiation but I took the time to prepare physically and mentally and I did very well. But you are not there yet. Please keep us posted.
Olga, Lucky like this comment
Hi Olga , I am very glad to hear you did well. I will find out maybe on this blog how you or others prepare for a thing like that. But for now as you say: fingers crossed. Thanks a lot!
Lucky likes this comment
Hey, Els—Not much to add, but just that I believe all those weighing in here know what they are talking about. We all hope you can get some attention paid to this right away, as it is a serious cancer, even if it is rare. The chemo/radiation treatment is doable, and it most often takes care of the cancer. Yes, there are side effects, but all better than the alternative. If it’s possible for you to get a second opinion it would be helpful. Since I don’t know how your system in Netherlands works, we’re all just guessing at this point about your options. Please know that we care about you, and keep us posted as to your progression through this, as well as any questions you have for us...we’ve all been through the diagnosis and treatment of anal cancer.
Olga, Els like this comment
Thank you for the advice lucky! All the advices that are given on this blog help me! How lucky I am too!
I already switched hospitals due to 2nd opninion. Every hospital has its own way of approaching anal cancer. I am now st a university hospital in Amsterdam.
Down side is that doctors come and go but there is more knowledge there than provincial hospital, who have les experience also.
‘I’ll see what happens and take all the advices given on this blog with me! Thank!
Lucky, Carol like this comment
Els, you are right. In my opinion a university-based hospital the right place to be. Good luck to you!
Els, Cleo like this comment
Els, your English is fine! Glad you posted and are getting some help!
Els, Lucky like this comment
I’m sorry you have to wait. That’s a hard thing to do. I hope they don’t find any cancer! Think positive thoughts. Keep us updated. Hugs! 💙
3 people like this comment
Hi Els! You speak better English than some whose Mother language IS English. I had Tonsil cancer; opposite ends of the body but same sensitive flesh type. It's 4 in the morning here, I'm wide awake, and retired. So even though time zones separate us, someone is always here. When your frightened it's best to come here, like you did. Blessings on all of your MD visits and tests/labs for wellness.
Lucky, Els like this comment
That is very nice of you to say Marcia. I will. Being terrified is one of the most difficult things to handle.. it is good to know there are people who really know and understand.
Thanks for your compliment :-))
Marcia likes this comment
Hello Els, I'm sorry you found us because of our shared cancer but glad you did so that you have a wealth of new friends who can offer support.
I live in the Netherlands too, just north of Amsterdam. I don't think we had the same treatment as I had chemotherapy and radiation, which most of the anal cancer people on this site had too. I was treated at the AMC and felt I had excellent care. I never had to wait long for scans or to see a Doctor. I have some post-treatment side effects but on the whole, I am pretty good. I really think you need to have a gynaecology check now for the lump you can feel, keep pushing until you get an appointment, but they will take you seriously.
Feel free to send me a private message if you want some more Dutch input. I never met anyone else who has anal cancer and it feels just lonely sometimes. There are not many of us in the Netherlands, maybe you want to have a friend closer than the US. But these people on this blog are just brilliant and have been my support and place to turn to when I needed advice or a place to feel was safe.
Susan
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Hi Susan that would be great. I switched to the AMC (GIOCA) and hopefully I will stay there.
They finally got the file and are going to look at my problems. Switching hospitals is not easy, because, as you mentioned, Amc does radiation chemo and where I was they did not.
Hélas the surgeon left not enough Sspsce around the tumor, in order to save the sphincter.
Afterwards docs disagree do now I chose AMC. But I hope treatment won’t be nessecary

I would love to connect with you privately, thanks for offering!
Just to say to those of you in the Netherlands, some of us are in the UK. Treatment here is pretty much like the US. I didn't want chemo, More tan anything else, and I hated every second of the treatment, but more than that I didn't want to die and everything I read said radiotherapy and chemo was the way to go, so I did. It isn't easy but you can see there's a lot of people here who got through it and are living life again.
Lucky likes this comment
Hi Jane, jeah I understand. If the docs had agreed on this it would have been easier for me. I am wiser now although I am still in doubt what to do .. depends on the next diagnoses. Well see! Thanks🙏😊
Some of the best research on treatment of anal cancer has come from the UK..
https://www.esmo.org/Profiles/Robert-Glynne-Jones

macmillan.org cancer support..a British cancer site has excellent information, especially about pelvic radiation.


Hi Els. I'm a little behind in checking in here and just now noticed you joined our group. Welcome, but so sorry you have a reason to be here. It's a great place for support and advice. Am I correct in understanding that you are awaiting biopsy results and this is your second go round with this disease, your first treatment being excision with no chemo or radiation? Excuse me for asking these questions, but I just want to make sure that I understand your current situation. I do hope you get results soon so you and your doctors can move forward with the appropriate treatment. I hope you'll keep us posted. Please know that you are in my thoughts and prayers.
Carol likes this comment
Hi smurf, yes you are right! Thanks for putting energy into the understanding. And also: due to brain dysfunction I am not always coherent. So it is extra convenient for me that you put it short and clear, thank you!
Yes, it is a pity for all of us to be member of a cancer group, but how nice that it exist with people like you. Susan already confirmed to me that in Holland it is almost impossible to find.
Hope you are fine, hope all of you are as fine as possible . I am finally
Smurf likes this comment

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Vital Info

Posts

January 24, 2020

Bilthoven, Netherlands 3723G

July 21, 1965

Cancer Info

Anal Cancer

June 2

Stage 3

2.1 - 3.0 cm

Grade 3

Yes

Fluorouracil (5-FU)

uncertainty and pain, confrontation with death

life's importance and happiness go beyond health.

not to be too worried, just be there

yes. homeopathy

regionally metastasized in pelvis.

to just be themselves

University Hospital Utrecht The Netherlands

to listen to early signs of fatigue helps me to guard a certain level of energy

It helps if I do not judge myself in anything and encourage my needs, even if some people oppose or do not understand

yes, tumor on the verge of the internal sphincter, 2,4cm. Polype in sigmoid colon, 2,lymphenodes involved pelvic and inguinal. Stage 3

in the end I had thrombosed hemorrhoides (never had, very painful) but surgeon did not see tumor, not even with ultra sound. After hem. was cut and cured, it still hurt. So I examined it myself and felt a rough kind of flat lump and I went back. I was sent to another surgeon and he took it away and sent it for biopsy. It was cancer. I had already had pain riding bicycle for a year, riding with 3 exta thick layers under me...and still.., I had bloody and deformed stools, pain in left cheek of the butt (therapist was wondering why her treatment did not help), I suffered tiredness and my legs seemed to have become heavy things that I dragged along. The weirdest thing I encountered was cramps in my pelvic muscles followed by involontary orgasms, very painful afterwards. I feel a bit ashamed to write this, but someone might be helped by it.. A year later, I had been free of cancer and symptoms, the hemerrhoids started again, and also the other signs, but nothing was found. Now, almost 8 months later it seems that behind the scartissue, on the other side of the anal canal, in the perineum, towards the vagina (I can feel it clearly, why did I not think of examining there before?), a large lump has developed since. So I went to the clinic. They took a biopsy and it came out positive. Scans show lymph node involvement. As opposed to what was said earlier: HPV-

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