diagnosed today.. nervous in Japan

Hi, this is my first forum post. I am from America, but moved to Japan recently and got a pap smear done here like I have done every year. I was told they found abnormal cells, and that they believe it is mild, but they wanted to run some tests to be sure. I was called in today and was told I have cancerous cells. My doctor was shocked because I am still only 24 years old, and have had routine pap smears every year. Because I am in Japan, and I do not speak fluently, this process has become much more scary and vague. The doctor said she believes the cancer is in stage 0, but she also said she is worried because of the type of cell - adenocarcinoma. I have an appointment at a hospital for further testing in a few days. I was told they will remove a part of my cervix and after examining the tissue, they will be able to determine if the cancer has spread. Does this sound like typical procedure that everyone has gone through? I want to make sure I am not misunderstanding due to language or cultural differences. Also, is having adenocarcinoma cells make the disease more difficult to treat? Is cervical cancer treatable? Is it likely to come back? I apologize for all of the questions. I am very scared and I just do not know who to ask, and every website says something a bit differently. Thank you to anyone who has taken the time to read this. 

Hi,

Sorry you have found yourself in this terrifying situation. You are definitely in the right place here though. Firstly, please try not to Google, it will successfully scare you half to death.

Cervical cancer is incredibly treatable. If it is as suspected and very early stages then hopefully removing part of your cervix (sounds like a cone biopsy to me) will be treatment enough for you.

Adenocarcinoma cells are typically found further up the cervix. Whilst this can sometimes make them difficult to detect it doesn't change how it is treated. I would think that chances of recurrence at such an early stage is highly unlikely.

I know how scary this has been for myself and many others on here. I can't imagine how you must feel in a country whose first language is not your own. Do you have family or friends in Japan with you to help support you through this?

I wish you the best of luck

Rachel x

Hi Rachh81,

 

Thank you so much for your reply. I really appreciate it. I have some family and friends here, but I only came out here 6 months ago, so I am not sure how comfortable I feel about talking about it with them yet. I have spoken to my mom all day on the phone about it, and she will be coming to Japan as soon as possible thankfully. She is Japanese, so she will definitely be able to help with the language barrier. 

 

Would a cone biopsy be able to detect the stage of it is in? I spoke to two doctors today. One doctor told me I would be receiving an MRI, and the other told me I would be having a part of my cervix removed, so I am feeling quite confused. Also, one doctor kept saying she is worried due to the type of cancer cell and is worried that it will spread quickly. 

I also wish you all the luck with your treatment and I know I am still new to this, but if there is any way I can help, please let me know! 

Hi there 

I also had the adenocarcinoma cells type, but with the added bonus of squamous cells too (yeah, lucky me)! I spent ages looking at stuff on the Internet and it seems that there isn't any real difference in prognosis between the two (or both together) cells types. 

Mine was staged at 1B1 so I ended up having a Radical Hysterectomy,  but sounds like you might be lucky and it is early enough to remove with a cone biopsy or LLETZ. Most people seem to have an mri, I guess it is  just part of the process as a double check.

It must be extra tough on you being somewhere that is a little unfamiliar,  but hopefully your Mum will be there soon to give you hugs and support.

Hope you find out more soon, and try not to worry, as others have said this is totally treatable at this stage.

Greta xx

Hi Greta!

 

Thank you very much for your response. It really is helping me being able to talk on this forum. The doctor said with the sample that she took, it looks to be stage 0, but she cannot know for sure until I have further testing, which I believe she meant by the MRI and the cone biopsy. Does that sound about right? Also, how long do these results usually take? 

Thank you again for your support. Definitely rooting you on as well! This forum is definitely inspiring me to keep fighting. How are things going for you? I hope things are well!

 

Thank you again

 

Alicia 

Hi Alicia ( lovely name by the way..) 

I had an LLETZ,  and got the results I.e the cancer diagnosis two weeks later

 As I'd already had this procedure done I had to wait for 4 weeks to let things heal properly before they did the MRI.  I was really tempted to use my private health insurance to get it done sooner,  but they assured me that I had to wait for things to heal properly do that they could get clear picture etc. So yes, during this time I had the usual panic that it might have spread, even though deep down I knew it wouldn't have. I got the results from that a week later and thankfully it was all clear. 

This forum is great, no matter what you have or what you're thinking there is always someone on here who has been through or is going through the same and is happy to share. It's definitely a case of safety in numbers 

Greta xx

Hi Greta,

 

Thanks again for your response. Yes, the waiting is definitely very difficult. I can't help but think about a million things. I'm also feeling back pain and nausea.. but I am not sure if it is just from the stress and shock about hearing my diagnosis. Are these symptoms that you had or feel that I should be worried about? I didn't start feeling this way until after I had my appointment with the doctor. 

Thank you again for talking to me. It really helps. I'm so glad to hear that you are clear! I hope that I will be just as lucky. I'm so scared. 

 

-Alicia

Hi Alicia, 

I didn't ever have any symptoms,  before or after the diagnosis. The whole thing for me was just picked up on a routine smear (Pap) test.

I had been suffering with back problems for the two years prior to the diagnosis,  which I knew were totally unconnected as I had had an MRI done on my back last year and it just showed degenerative disc disorder.Even so, I then went of on a panic about it.

I would think that the back pain and nausea are as you say stress related,  our mind & body does like to play these horrible tricks on us when we least need it! l know it's easy for me to say now I'm over the worst,  but please don't be scared. Are there support networks over there that you can go to and speak face to face with people? I didn't personally do that, but I know lots of people who have found it to be very helpful.It is oddly easier to talk to strangers that friends and family sometimes.

Greta xx

 

 

Hi Greta,

 

I did not experience any symptoms either. Everything was told to me through the pap smear and in less than 3 weeks, I went from pap smear to cervical cancer. I am still having trouble comprehending it I think.  The doctors seemed to also be confused. How quickly can the cancer spread? I got an x-ray,CT scan, and ultrasound for a different issue less than 3 weeks ago, and nothing appeared at that time. 

 

I also have a herniated disc in my back, so maybe it is just acting up due to the stress. I just moved to Japan recently, so I do not have many people to talk to, but thankfully I do have my mom who will be here soon. That's why this forum is very helpful and important to me. Thank you for helping me get through this. I have not really talked to anyone about it yet. Thank you again

 

-Alicia

Aw bless Ya,,didn't want to read and run. Just hope it all works out for you xx

Hi,  

I worried initially about having to waiting for 4 weeks for the MRI.  I knew it would be another week for the results from that and then potentially another couple before I got my op (I was told from the start that I would need at least a hysterectomy.) I voiced these concerns to my consultant,  and he said that a wait of 6 weeks,  which is pretty much what happened, would not be an issue and he wouldn't expect anything to change in that time. 

Greta xx

 

Hi Alicia,

I too had adenocarcinoma diagnosed in a country very far away from all my family and where I don't speak the language. I know exactly how isolating this is. My mum came out as well though she speaks even less of the language than I do :-) If you want to read my story just click on my name in pink and that will take you to my profile where you will find "My Big Fat Greek Hysterectomy" - but don't feel you have to :-)

OK, so, the bit of your cervix they are taking will be either a LLETZ or a biopsy. They will put that under a microscope and that will tell them the variety of cancer cells that you have. The MRI scan will allow them to see whether or not it has spread. If you have been having annual pap tests it is very unlikely to have spread very far. Treatments for cancer are very similar in all developed countries but the speed at which things are done varies greatly. In UK where most of the people on this forum are from things seem to go slowly in comparison to Greece where I am based. So if you find that everything goes a bit quicker for you than other people on the forum, it is because you are in Japan and not because you are dangerously ill, OK :-) 

Be lucky :-)

Tivoli

Hi Tivoli!

 

Thank you very much for your response! I really do appreciate it. It's nice to know someone understands what I am going through, although I am sorry that you had to go through it as well! I definitely will read your story! 

Due to what they thought was appendicitis, I had 3 x-rays, a ct-scan, and multiple ultra sounds done (from the inside as well) and during that time, they did not find anything. Is that a good sign as well? That was only about 3 weeks ago, at most. My doctor said that from the sample she has taken, it appears that the cells are still on the surface, but she cannot be sure without further testing, but when I asked if I had a tumor, she said no. She said she is nervous about lymph node involvement due to the type of cell. That is what I am very scared of as well ! The doctor did not seem to be very optimistic about my diagnosis.. but again, I am not sure if that is a cultural thing. 

 

Thank you again for your reply and I will definitely read your story. People on this forum like you are deifnitely making this road a bit easier and helping to inspire me to keep fighting as well. I wish you all the luck in the world!

 

Sending you love from Japan!

 

-Alicia

Hi again Alicia :-)

I would think that if you have already had a CT scan, then this would pick up any enlargement of lymph nodes. If this was only three weeks ago they can just go back and take another look at the scans they did then. This really is sounding very much as though you have been caught at an incredibly early stage and I suspect it is simply the doctor's language about lymph node involvement that is scaring you. It is her job to be nervous of lymph node involvement but that does not mean that she thinks it is likely.

If it helps you at all, I was adenocarcinoma stage 2b. As far as I can understand it, my tumour was in the region of three inches across (75mm) I had no lymph node involvement.

Be lucky :-)

Tivoli

Hi Tivoli,

 

Thank you again for your response!!  I wonder if I should call that hospital and ask for them to send those results to the hospital that I am going to on Monday. You mentioned that I would probably given an LLETZ or a biopsy. Is that something that they can do right away or does it require a few days of preparation beforehand? Also, do I usually have to stay in the hospital for a few days afterwards? 

I read your story and I cannot believe how incredibly strong your are. It really does help me to read stories like yours to help me keep a positive mind. I tend to always be negative haha so for this situation I definitely have to change my way of thinking! Do MRI scan results also show lymph node involvement? How long does it usually take to get results back? I apologize for having so many questions! Unfortunately there is no one I can speak to here, so I am just trying to get through until Monday! 

 

Wishing you the best of luck and love from Japan! So thankful to be able to speak to you!

 

Alicia 

Hi Alicia :-)

I wouldn't say I am particularly strong, it's simply that when the water comes over your head you start swimming :-)

A LLETZ or a biopsy can be done on the spot assuming that is what they are expecting to do, it requires no planning on your part except that afterwards you will probably need a sanitary towel as opposed to a tampon, and no, you shouldn't need to stay in hospital. 

I think it would be an extremely good idea to call the first hospital and ask them to send your scan results to the second one, that should save everybody a lot of time and effort. 

I think MRI scans do show lymph node involvement because those are the scans most of the women in Britain have, whereas I have CT scans in Greece. How long it takes to get results back depends greatly upon where you are. In Britain the waiting for results seems to me to be an eternity and I am loath to divulge how quickly I get mine in Greece for fear of making a lot of women very envious. Suffice to say there are a great number of small private microbiology labs dotted around in most towns and cities where the staff are just sitting around waiting for customers to walk in off the street, so there is zero backlog.

Try to enjoy your weekend, nothing dramatic is going to happen to you before Monday :-)

Be lucky :-)

Tivoli

Hi Tivoli!

 

Thank you always for your response. I am so thankful to be able to talk to you and others on this forum! You're right, I just have to wait and see what happens on Monday and just go from there. Trying to stay positive! Hopefully results are quick here as well! thank you again and hope you are well!

 

Alicia :)