Follow Up

bikkuri

Hello all.

I was diagnosed with Stage 3C invasive ductal cancer last Dec.  Since then I have had a mastectomy, chemo and radiation.  I am now on Tamaxifin and Nolvadex.

 There has been little in the way of follow up and it is making me nervous.  I have had hip and knee pain, as well as lump in my left breast in the same area as the tumor was in the right.  My doctor did an ultra sound of the lump and said that it was nothing.  He ordered no tests to check the hip.

I live in Japan and wondering if things are done differently other places.  I was told that I was high risk, but there doesn't seem to be any follow up.  No imaging.

I do not want to be paranoid, but I'm wondering if I should be more aggressive about getting some tests done.

Thanks for listening. 

nowheregirl

Hi,

             

Sorry you are worried and being nervous. I am a Japanese living in Japan but my oncologist has never ever belittled my concern. I was diagnosed with the same type of breast cancer as yours (mine was stage 2b) in July of 2005 and did chemo before I had a lumpectomy in March of 2006. Ever since I had surgery, I have been having follow-up scans (MRI, CT, bone scan) every 6 months (just had them today!). If I ever get a symptom that concerns me, my oncologist will never wait for the next follow-ups and will certainly order as many tests as he can as soon as possible to see what's going on. 

Personally I don't really think it matters where you live unless you live in a developing country where medical resources are limited. No matter where you go, there are always "I know it all" type of doctors. My first oncologist was terrible so I just dumped him. Just remember that you have every right to have you questions answered and your concern heard and investigated. I don't know where about in Japan you live but if there's anything I can help, feel free to "private message" me (click on my name and hit "send private message" link).

Misawa47

I am an American living in Misawa Japan. I had a mammogram that showed microcalcifications in my left breast. I traveled to Atlanta Georgia in Aug 08 to have a stereotactic biopsy done; however, they were sampling the wrong area in my breast and didn't get any microcalcifications. I now leave tomorrow for ANOTHER stereoactic biopsy in Hawaii that will be done on 21 Nov. It is very expensive for me to travel for medical procedures; however, the American doctor here says there is no Japanese doctor that can render treatment/tests. Where do you live that you have such great care? If they find something malignant in Hawaii, there is no way I can afford to stay in a hotel for a long stay and get treatment. I don't even know where to start to look for a doctor in Japan. Any advice? I don't mind traveling as far as Tokyo if I need to for care if it comes to that. I'm really nervous.

nowheregirl

No no noooooo! There are so many great doctors who specialize in treating breast cancer in Japan! And there are many of them who have experience of studying overseas (mainly in the U.S. like my oncologist) so not every doctor in Japan is too bad at English. Unfortunately the northeastern region of Japan where you belong is rather a rural area so there are not so many major hospitals. But there still are a few, like in Sendai (in Miyagi Prefecture), Fukushima etc. If you don't mind travelling as far as Tokyo, then there is a hospital that is well-known for its specialization in breast cancer, called Kameda Medical Center. http://www.kameda.com/us/index.php It's located in Kamogawa city in Chiba prefecture that is about 5-6 hours away from Misawa.

If you want your hospital to be closer to your place, then there is a cancer center run by a National University called Tohoku University that is about 2 hours away from Misawa. Of course you can get seen by the oncologist/surgeon who specializes in breast cancer at these hospitals or many many others.

By the way, I live in the 2nd largest city in Japan called Osaka and my oncologist/surgeon is very well known for his specialization in breast cancer and his own unique way of performing surgery. He studied and worked at the National Cancer Institution in the U.S. for 8 years. If you are interested and want to meet with him, I can arrange. He works at a university hospital in Kyoto that is 6-7 hours away from Misawa but there are a few really reasonable accommodation facilities that only those in need to go to that hospital and the other one neearby for a serious disease can use (like $10.5 per a day).They are run by a volunteer group.

If you want me to contact any of the above hospitals or any others (if you know), I can call them for you and ask if there is anyone who speaks English or any other questions you may want to ask. Just PM (private message) me if you want. Click on my name so my profile will come on the screen and to the right you will see "send member a private message". Click on this and you will be able to send me a message. I am here willing to help!

xo

Fumi

runalot08

Misawa47,

Sounds like you are military or associated with the military?  I am also.  I am down here in Okinawa and as far as I know if you are either military or dependent they should cover any medical you need unless it is elective.  I am sorry you are having to pay yourself.  Depending on your situation you should'nt have to.  I am probably going to be visiting Hawaii very soon myself.  I have a situation with my breast that we feared at first was IBC but the biopsy performed here came back negative.  Now they are thinking it could be something having to do with my implants.  I have had them for almost 4 years and no trouble till now.  The doc is thinking that the implant is somehow hitting or rubbing on nerves.  My left breast is swollen and very painful sometimes stabbing pain,  I have a red rash that comes and goes, my nodes under my arm are swollen etc.  They do no MRI's here so I cant have one of those.  As far as I know Tricare will be paying for me to go where ever I have to if they can not treat me here.  If you are not military will your insurance not cover your expenses?  It is not exactly elective for you to have a biopsy They do biopsies down here at Lester.  I hope all goes well with your biopsy and will think good thoughts for you.  Where at in Hawaii are you getting your medical?  I know that there is a military hospital and a civilian one.  I think that my doc said I would go to the civilian one because the military one is very busy.  If you don't mind could you PM me and let me know how the facilities and staff are.  Which ones you recommend or to stay away from.  If you could that would be very nice. 

Timtam or Fumi,

Ohio gosaimas.  It is wonderful of you to give the information for your local area hospitals and clinics.  I was thinking of just flying to Seattle and dropping into a clinic before I found a doc that would listen to me.  It is nice to know that there are other places that are closer.  I have family that I will have to leave here if I have to go to the States.  It is cheaper to fly them to main land then all the way.  Do you know of any facilities on Okinawa?  Does your doctor know anything about IBC or has he treated anyone with it?  It is misdiagnosed so often and I really am nervous in my gut that just because the biopsy came back negative that it still might be.  (the biopsies often come back neg if the right spot is not hit)  The fact that there are no MRI's here for the breast really bothers me.  It seems to be the best test available.  I do not want to wait till there are more symptoms because that means the disease is then further along.  Sorry I am rambling this board seems to be my only place to vent or tell my worries. 

Anyway, I think it is really great that you are able to help with information on your local area.  I think there should be a thread where people post if they are in a different country/state and have knowledge about the local cancer facilities.  That way people traveling and of course the military or those who live abroad can easily find info for places in their area to go to if they have a problem.

Thanks again, Runalot08

nowheregirl

Hi Runalot,
　　　　　　　　　　　　
Boy, I can't believe how much false information about the medical treatment or hospitals in Japan you girls get. Who said there are no MRI's in Okinawa??? I checked with the Japanese Breast Cancer Society website and at least there are 5 doctors in Okinawa who have been certified as breast cancer oncologists. 3 of them work at the major hospitals where you can get MRI's and the rest 2 are in private practice. Here's a list:
　　　　　　　　
Naha City Hospital / Surgical Department / Dr. Hiroshi Kudaka (MRI's available) / 2-31-1 Furujima Naha City / Main Phone: 098-884-5111
　　　　　　　　　　　
Tomigusuku Central Hospital / Surgical Department / Dr. Kuniki Higa (MRI's available) / 25 Ueda Tomigusuku City / Main Phone: 098-850-3811
            
University of The Ryukyus Faculty of Medicine & University Hosptital / Surgical 1 Department / Dr. Takao Miyaguni (MRI's available) / 207 Uehara Aza Nishihara Nakagami-gun / Main Phone: 098-895-3331
                 
Naha Nishi Clinic / Dr. Nobumitsu Tamaki / 2-1-9 Akamine Naha City / Main Phone: 098-858-5557
            
Miyara Clinic / Dr. Kyuichiro Miyara / 2-3-1 Iso Urasoe City / Main Phone: 098-878-3311
                     
These are the hospitals in Okinawa but if you don't mind travelling a bit far, then there is a very, very well-known private clinic that is specifically designed for treating breast cancer in Miyazaki Prefecture called "Breastopia" that is located in Kyushu island, about 4 hours away from Okinawa by air. Of course they do have an MRI and other most updated medical equipment which I haven't even seen at my hospital. I am 100% sure they have much knowledge about IBC because they only treat breast cancer patients from all over Japan or even overseas.
http://fus.breastopia.or.jp/eng/
              
If you want me to contact one of those hospitals/doctors for you, just PM me. I will be glad to help.
           
xo
Fumi

runalot08

Fumi,

Actually the lack of MRI is from the bases.  I am told that I can not have one here because there are no resources here. (Meaning they can not do it on the bases)  I do not know why they won't send us off base to the local establishments if they can not provide the services themselves.  I am very close to finding somewhere to go and pay for it myself. 

I am just about at wits end with all of this.  The pain and swelling has been since August.  The docs are really trying to figure out what is going on but because the mammo came back o.k. and the biopsy came back negative they have given up the cancer idea. (I am 33 with very dense breasts so that does not help either)  I just do not think that they see all the posts that come back negative or fine then the patient really has something serious.  If they do not biopsy IBC in the right place it will obviously come back negative. They can not link my problems to anything else really.  Right now the doc is thinking that maybe my implants I have had for 4 years are hitting nerves and causing the pain.  However that does not cause swelling or swollen nodes and an on again off again rash.  They are just pulling ideas out and trying things to see if they work instead of sending me to specialists with the right equipment to rule out IBC.  My breast is swollen and hurts all the time.  They have me on pain meds and even the stabbing pain breaks through that.  My nodes are not huge but they are swollen under my arm and I even felt them for the first time in my abdomen the other day.  My doc said that it was because I was so skinny.  I wish   I am 5'4 and 120ish.  I have been smaller and never felt lymph nodes in my pelvis area before.

Oh well, thank you so much for the information I may print it out and take it to my next Dr. appt and ask why I can't see one of them.  See what they say.

Your great!  Thank you again for all of your help.

Runalot- Vickie

Misawa47

Hi ladies,

I am retired military and my husband is a contractor. I get free medical at a military base; however, I have to pay out of pocket for travel and hotel expenses to get to these places. Of course Tri-Care covered part of the expense to see the Emory Cancer Institute in Atlanta; however, I still had to pay air fare and hotel.

 Great news...my biposy results were benign. I had such a horrible stereotactic biopsy in Atlanta where they weren't able to numb me and they were still able to get 12 samples with me in excruciating pain.  I vowed I would never have another stereotactic biopsy done; however, when I learned they missed the spot, my doctor here at Misawa insisted I go to Hawaii for ANOTHER stereotactic. I was a nervous wreck. Of course, I could have seen a doctor locally with a referral; however, I would have to pay a percentage where if I went to a military hospital I didn't have to pay anything so I elected to to to Trippler Army Medical Hospital in Hawaii.

I took a Xantax prior to the procedure as I was so concerned they wouldn't be able to numb me as before. They gave me 10cc of lidocaine and I didn't feel a thing! This was done on a Friday (21 Nov) and I went for the results on the following Wednesday. The doctor then examined me and felt 2 lumps in the other breast (right) that they were concerned with so insisted that I have an MRI before heading back to Misawa. The doctor that performed the biopsy did an Ultrasound on the lumps but didn't see anything to be concerned with. However, the second doctor said a mammogram AND an ultrasound can miss a lot. Due to Thanksgiving, I wasn't able to get in until the following Monday (1 Dec) and they MRI'd both breasts to "make sure". I understand it will take about a week for the pictures to be reviewed.

 The doctors/staff at Trippler were amazing. They were very knowledgeable and spent a great deal of time explaining to me every step. I actually was able to get a room at Trippler Lodging; however, it was so far from the city and there were no eating establishments within walking distance that I ended up moving to the Hale Koa Hotel.

Fumi, thanks so much for your information. I have been inquiring about specialist in Japan but was told there are no cancer specialist in Japan. This was from my surgeon here at Misawa! I will keep this information and pass it on to other people here at Misawa and for myself if needed in the future. I heard the past wing commander's wife that just left here this past summer, was just diagnosed with stage 4 breast cancer. So sad. She just had a baby and has other small children.

Vicky, I agree with you, it would be nice to have a site dedicated to give people information in their area about clinics/specialists, etc. I can't believe you are getting "ignored" on your symptoms. It sounds really serious. You know your body best and I would be persistent with getting an MRI. My mother has cancer for the 3rd time now. The first time was stomach cancer and they kept telling her it was nothing. She knows her body so well so went to another doctor insisting that something is not right. That is when they found the stomach cancer. She then got ovarian cancer and now fighting cancer for a 3rd time in her stomach area. You are right that if there is something, they key is to catch it early. I will keep you in my prayers.

God Bless all,

Bernice