Els's Cancer Blog

sorry to say...

...but it turns out the cancer has come back. Apparently the follow up was insufficient and not thorough enough, said the oncologist who is now treating.

She was angry about how in the world the other expert could have missed it, and I have the same frustration, but it does not change the situation.

The new biopt was well done this time and results came back in two days! Although they are still waiting for extra results.

What a pity.. I had hoped for scar tissue or something like that.

The new doc is very frank and very kind and I like her a lot.

I am taking some rest now and finally I sleep soundly, which makes a big difference. 

For this reason I have not been following your posts or comments, first I was too nervous and after I had to digest a bit.

Next time a doctor tells me several times not to worry, I will stand ground untill I can agree. 

There is so much to learn...and cancer and its process teaches a lot!

A hug to all of you..

 

 

3 people threw a punch at your cancer.
Cherie, Janice sent you a prayer.
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A hug back to you Els and keep asking questions! Can only hope this doctor will really pay attention as it appears is happening, and you will get the followup needed to get rid of this beast!
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Hi helen, thanks.. although I do not think of the cancer as a beast (yet) I understand what you mean to say: thanks a lot for your support.
Yeah i think I am in good hands and I have to promis to myself that I will not be too shy in front of her to say what I think.. not easy..
Helen Marshall, Lucky like this comment
I'm so sorry! It sounds your in good hands this time. Make sure you take a list of questions with you, and you can call or email to get answers as they come up.
We are here for you!
Let us know what their plan is for you.
I hope you have friends and family that are there for you.
Big hugs
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Hi easterly, thanks. good idea to make a list. I will keep you all informed.. and yes, I am not alone,although I live alone in a complicated setting.But most importantly: I have a home and people who care for me and I for them.
You too a big hug!
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I second Helen’s advice to keep asking questions. And don’t be afraid to read about the latest anal cancer treatments. In general it’s pretty much what it has been for some years...about 6 weeks of treatment, with two rounds of chemo and 30 or so targeted radiation treatments. Worked for most of us here. Thanks for keeping us up to date Els.
Olga, Easterly like this comment
Hi Lucky, I will compare it with what you have written here..
In another university hospital the radiologist warned me for internal radiations..you or anyone with experience maybe?
Lucky likes this comment
Hi Els, there is the study that patients who had external pelvic radiation have better local control and lower recurrence rate than those who just got internal radiation without prophylactic treatment of their pelvic lymph nodes. There is always a possibility of microscopic disease present. I would also ask about the radiation dosage in Grays and compare it against the guidelines. I've done this prior to my Cyberknife liver treatment. The doctor wanted to use 30 Grays for me which was recommended for the palliative reasons. I requested 50 at least which gives the better local control. He agreed. I got what I wanted and have no regrets 😊. And how about a PET scan? Is your doctor going to order it? Big hugs!
Kim, Lucky like this comment
We have all had it, most the external. there were a few new people I haven't seen on the blog, that had the proton radiation, I think that is internal; or directly on tumor; which all depends on where the tumor is. We got through it! I did pretty well going through it, and went back to work 6 days after end.
Olga, Lucky like this comment
Hi Olga , interesting what you say... I never even heard about the word gray. Is it gamma ray or something like that ?
What is the benefit of a pet scan? Until now I had mri with contrast. And that is also scheduled for now.
I agree with you that divisions made by myself always feel better and give no or less regrets. Good that your doctor is ready to listen!
Cyber knife liver treatment sounds very tough. Did your liver metastasis have symptoms? The saw some spot in mine in the beginning but it was too small.
Histology tested the cancer as type scc of basaloid type. Does that mean any thing to you?
I have a lot of questions.
A hug to you too!
Lucky likes this comment
Sorry Olga...easterly..my phone is so small that I wrote to Olga in the wrong boxes.
That is amazing how quick you recovered. My condition is not so brilliant as I had this brain thing and also a burn out. I am so tired that I feel
Hardly any peps to prepare my self for whatever is coming. I mentioned it to the doctor. He said there was help available to pull me through. I have seen several people close by suffer so immensely that There is a deep fear in me for treatment.
It is good to hear that it was not too hard on you..
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Hi Els. A PET scan is used to screen for possible malignancy in whole your body. The MRI shows lesions, but the PET scan shows if they have high metabolic activity. My liver met was totally asymptomatic. It was found on the CT scan, and the PET scan showed high glucose uptake in that spot. Basaloid squamous cell carcinoma is an uncommon high‐grade variant of squamous cell carcinoma. There is a lot of info about this type you may find online. Seems like it's more aggressive with a tendency to spread. I would request a PET scan and keep an eye on your small liver spot. And Gray is just a radiation measurement unit. Hugs!
Lucky, Easterly like this comment
Thanks olga this is a big help.🙏 You can tell I am new at all this😊
When i asked the colorectal surgeon about the basaloid type that it apparently is and he said he did not know what is was/is.. I thought it was not important.
I will asked the new doctor what she thinks. I know the cancer I have is high grade, undifferentiated, but it is not growing super fast, luckily.
What do I do if they wont allow a Pet scan? Depends on the reason of course but they can say anything to convince me. I n any casse..I will ask it
Also about the liverspot🤞
I hope you will get everything you need. I wish you the best!
Thank you Olga !
Olga likes this comment
I am so sorry. Sending hugs, love, and prayers
Els, Lucky like this comment
thank you a lot
I am so sorry. I have had similar issues with my original oncologist. I pray you are able to get the treatment you need.
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thanks Laura, I wil read your story..thanks for your prayers!
Lucky likes this comment
Absolutely know you are in the right place for care now! I am really sorry that this cancer has been diagnosed in you, but I am reassured that you will get the treatment you need and I know you will be listened to this time. There is no going back to re think everything, it won’t help. I’ll be keeping you in my thoughts and will be in contact. We ‘Dutchies’ can support each other!
Hi susan, yes, I am very glad you know this doctor and was treated by her. I am grateful you offer me your support! I won't go back in thinking but I will not go back to the former doctor either :-)) errors are human and now I learn from this..I have to listen also carefully to what is true for me, no matter what the doc says.. we will keep in touch and send eachother jokes and funny movies!
Lucky, Easterly like this comment
Big hug to u Els..did they offer treatment plan yet? If its radiation and chemotherapy, I highly recommend proton radiation if available. It spared me from complications associated with conventional radiation by about 40 to 60%. This is heavy news right now. We are here to go through this with u. Glad u got the right doctor this time. Prayers to you.
Lucky, Carol like this comment
Hi inshock.. I will look in google for what it is..
It sounds like a better version of the other rays..
I'm sorry the cancer is back. I like this new doctor though! She seems like she's going to give you great care and the strength to get well and stay well. Blessings on kicking pesty cancer again, lovely Els.👍🏻
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Thank you lucky! I hope so too..
Hi Marcia I just called you ‘lucky’. I answered you in the next reply :-)
So glad you got a new doctor!!! Sorry to hear about the results. Big hugs to you!!! 💙
Lucky, Els like this comment
Thanks lucky, me too. Big hug back!
Allseitz likes this comment
I’m so sorry to hear this! I’m sending you lots of positive thoughts from afar. I’m extremely happy to hear you’ve found the right doctor and Susan has had prior positive experiences too. Hugs to you sweet Els ❤️
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Yes, Susan is my green flag😊. I am very glad she knows all this. Hugs for you too Kim!
I am very sorry to hear this. May this doctor be much better informed. Please let us know what the plan is as you move forward. I wish you all the best.
Carol likes this comment
Hi smurf, yes I will keep on posting, much too valuable 🙏 this doctor started a practice out of the hospital and took his patients, but he did not have the right tools, like digital scope. He kept saying: next time.. but apparently there was not enough money.
All the best for you too!
Smurf likes this comment
Oh, no. I'm so upset to hear this. I hope you and your doctor have plans to move forward as quickly as possible. Sending you healing thoughts and lots of love.


I have learned that we have to ask questions and advocate for our own health. My experience was a bit similar to yours. I first went to a general surgeon to get a "polyp" removed and about 1 year later, during a follow-up the surgeon wanted to the same procedure again! This time the biopsy came back positive for anal cancer. (When I think back, was the first polyp sent for biopsy- because it was not mentioned to me.) After my treatment for cancer, I was having follow-ups with two oncologists and the general surgeon. About 8 months after treatment, the general surgeon said she wanted to biopsy to be 100% sure. WTF?! From the collective experience/wisdom of BFAC, I immediately made an appointment with a colorectal surgeon; and when I saw him he said the biopsy was not necessary.
Lucky, Carol like this comment
Pff Maggie , seems you acted rapidly and used this blog well👍 It is great because there are many people here who know a lot from experience. Thank you for writing yours down. I feel less alone in this. And it makes me more determined to stand ground. Thanks
Maggie, Lucky like this comment
Sending you love and hugs. Yay for the new Dr too, she sounds like a gem! Glad she is taking care of you now. But we all still have to self advocate, which should not have to be...but it is. Stay strong and keep asking questions, of the Dr. and us! We are here for you. X
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so much to read...

....and so much to keep up with..  I hope i will be able to get to know and support all those who support me..the days are short! aND i am still figuring out what is the most efficient way to use this site. So... sorry if I did not add myself to your support group...it needs a bit of time.

Thanks to all the advice I called the clinic to see if the doctor had sent my file to the hospital, unfortunately not. Good I called. I tried to get in touch with a gynaecologist but that was difficult. did not succeed. But I try to be proactive and not let it slide...pfff

In the mean time I read the blogs and comments and laugh and cry and I feelblessed to have found this andf I hope I will be bale to stay in touch if things may be come a bit more busy.

I have somebody from the village coming to my house , a woman that helps me cope with all kinds of things. She is great too. 

The year before thay spotted the cancer I had a weird breakdown, like a stroke, with memoryloss and all. It was not a stroke said the neurologist. Since this moment I have some braindifficulties with organising input and planning. And it is difficult for me to remember stories from others and also my own, lol. 

Now i sometimes think it might have been a sign of the upcoming cancer..a bit extreem maybe, but...did any of you experience something quite heavy arond a year or so before the diagnose? I also immigrated back to Holland from France, that year, because of devorce. 

 

 

Sandyjo sent you a prayer.
Olga, Maggie sent you a hug.
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Since my cancer was diagnosed, I have studied and read so much about this subject I can do a dissertation on it. I learned that many cancer patients prior to learning about their diagnosis suffered a stressful event within 3 years of their diagnosis. I guess the stress depresses your immune system. It seems that you were under alot of stress prior to diagnosis. Since cancer is a complex illness, multiple modalities of healing are needed ie..in addition to changing diet, stress management, exercise, deceasing toxins, and taking care of your emotions are also
needed as well. With that being said, don't stress yourself about having to answer to all the blog comments if it's too much. If you have a chance to post something, it's so great because we are here with you through your journey and it's so nice of you to share with us.
Els, Olga like this comment
yes, yes!! The year before, I had eye problems, flashes and floaters; a sign of retinal detachment. I had 2 episodes. I haven't had any problems since.
Also, after treatment, with a scan, they detected a TIA (small one) and wanted to know when I had that; beats me? could have been from chemo. I was told, it could have been from birth; however, it was not discovered til after treatment, even though I had a head scan before treatment.
Helen Marshall, Olga like this comment
Glad to read that you are going to hang in there and keep trying to see the doctors that you need. Don't let go!

I don't have any story about a previous event that might have triggered the cancer, but I did learn some years ago that smoking is not just bad for you because it damages your lungs, but because it damages your immune system. So sad to see anyone smoking, I want to run over and shake them!

We are here for you, no need to comment on every comment! Just let us know what is happening...
I had episodes of SEVERE dizzy spells. Couldn’t work or drive. Went to so many doctors and had so many tests. They couldn’t find anything. Then a year later I was diagnosed with Lupus. Then a year after that was the cancer. It’s been years of crazy! I hope now I have a nice boring life. Boring is perfect for me. Lol
Els likes this comment
Haha i know what you mean! I hope and wish for you a very easygoing life...this was /is already enough for years to come...
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Vital Info

Posts

January 24, 2020

Bilthoven, Netherlands 3723G

Cancer Info

Anal Cancer

June 20, 2018

Stage 1

1.1 - 2.0 cm

Grade 3

No

uncertainty and pain, confrontation with death

life's importance and happiness go beyond health.

not to be too worried, just be there

to just be themselves

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

Probably. Waiting for results biopsy to come back on monday 27th january 2020.

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 now I am waiting for the results.

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