still so many questions

Hi everyone,

 

Yesterday I was told by my gynecologist that she found cancerous cells in my cervix and that I need to get further testing to determine the staging. I either will be getting an MRI or a cone biopsy. I spoke to two different doctors and both of them gave me different information..which is very confusing.

 

At the same time as my pap smear, I was also given an ultrasound, and everything was clear. I also asked my doctor if I have a tumor and she told me I did not. She told me out of the sampling that she took, it appears to be in stage 0 (the cells are on the surface) but she cannot be sure without a cone biopsy. I am worried that she really can't tell from the sample that she took and she just said that because she wasn't sure. She said she is also concerned that it has reached my lymph nodes because I have adenocarcinoma cells and that it tends to spread quickly. I asked her if I got all of the tissue removed, if I would be okay, and she told me that the cancer can still come back. She appeared to be very pessimistic about my treatment. Should I be concerned? I cannot help but think that ths cancer is spreading everywhere after what she has said. I have my MRI/cone biopsy? in a few days. I am so scared. I have some back pain, but I also have had back pain for years due to a herniated disc, so maybe the fear and stress of being told this yesterday is just causing my body to ache. Is that normal? Is that a sign that it has spread?

 

If she says I do not have a tumor, does that mean I am still in an early stage? Is it possibly for her to know that through the ultra sound and the sample that she took? Is the recurrency rate high for cervical cancer? Is it treatable? I would really appreciate having someone to talk to. I do not have many friends in family in Japan since I just came here a few months ago. I am trying to remain strong. I want to fight this. 

 

Thank you for taking your time to read this. Wishing everyone good luck. 

 

-Alicia

Hi Alicia,

When we get get conflicting information it makes an already difficult situation much worse. I would have thought that if the one doctor thinks it's stage 0 then it ought to be very localised and gettable (is that even a word) with a cone biopsy. When this is analysed they will be looking for clear margins (no sign of disease at the edges of sample). That being the case it is extremely unlikely to have spread.

Someone on here recently gave a super anology to describe this and it went something like this. If you have a fire in one room and that fire is put out & there is no evidence that the fire is in immediate surrounding areas (ie clear margin) then there is no reason to think that the fire would be in other rooms further away.

Unfortunately different countries do things different ways so it's really hard to know what's going on. It may be that they will do an MRI as well. Nothing to worry about and will give them a better idea of what's going on.  Is there anyone at the hospital you can talk to for clarification of the plan. Perhaps ask for an interpreter.

I wish you the best of luck and hugs. 

Rachel x

Hi Rachel,

 

Thank you again for replying to my post! A lot of time to myself gives me a lot of time to think about things, that I probably shouldn't lol. I just can't help but be worried about my back pain. Is that a bad sign? 

 

I hope you are right and it is still localized and they will be able to remove all of the cells. I received a CT scan, X-rays, and multiple ultrasounds a couple of weeks ago, because they thought I had appendicitis and at that time, they did not find anything unusual, so maybe that's a good sign? Reading through these forums have given me the inspiration to try to keep a positive mind and keep fighting. Your treatment starts soon? How are you feeling? I wish you the best of luck as well!

 

-Alicia 

If you've had all those investigations and nothing was seen I would take that as a Good sign that things are contained and therefore should be able to be got with a cone biopsy.

You said yourself that you've had back pain for years. Our bodies play nasty tricks on us when we are stressed. Pains that you would have ignored before suddenly mean you've got cancer everywhere. I would be very surprised if your back pain was related to anything but the fact that you had a herniated d

I'm not sure how I feel about starting treatment.On one hand I can't wait to start fighting this thing but on the other I hate the feeling of having no control over anything. You're given a list of side effects that may or may not happen and just have to wait and see.I'm not good at that, like to know exactly what to expect and when. Need to do it though so I'ok put in my boxing gloves come Monday morning and fight like a girl.

I really do feel for you having to go through all this on your own. Hopefully your mum will be with you very soon to provide support.

In the meantime virtual hugs and positivity coming your way.

Xx

I hope you're right. I'll just have to wait and see. Thank you so much for talking me through this.

I understand what you mean about hating the feeling of not having control over anything. I'm exactly the same way. But I'm definitely cheering you on from Japan! and even though there may be some side effects, you're taking the steps towards youre recovery and that's what is important! I really do look up to you and all of those who are fighting! Definitely inspiring me to get through this as well. Good luck with your treatment! 

 

Sending you love from Japan

 

-Alicia

Hello again Alicia :-)

I just wanted to agree with Rachel on all counts; if you have already had an ultrasound and nothing was spotted, that is a very good sign. It is sounding more and more as though you have only a handfull of cancerous cells on your cervix which don't even amount to a 'tumour' and this is great news. Yes it is also true that adenocarcinoma tends to hide itself away farther up inside the cervix making it harder to see, but if it becomes a bit bigger then it becomes quite easy to see, so it still sounds as though it's not all that large. The body plays dreadful tricks on us and we do tend to notice all sorts of aches and pains once we know we have something nasty growing inside of us, but as someone who has had a ruptured disc removed I know that disc-related back pain feels different from gynaecological back pain, so if yours feels like the usual then most probably it is the usual.

I suspect that your doctor's 'pessimistic' approach is probably your perception of a cultural difference between you and her. I find this all the time, not only with Greek doctors but also with German acquaintances; for example, my chemo-oncologist described my chances of survival as 'quite good' but it was my sister who pointed out that the word 'quite' can also be used to mean 'very'. Likewise, a German woman asked me if I was well, I said "of course!" and she replied "no not of course! It could return" which is truthful, but not helpful but that is simply German culture for you, they are very blunt.

At the moment you will be finding everything very new and strange but do try to relax. People don't get to be oncologists if they don't know a thing or two about cancer, they might not be the best at conveying this to you but they do know what they are doing and what is the best way of treating you. And your mum is coming out to join you, so that's lovely :-)

Be lucky :-)

Tivoli