CancerCompass message board discussion started by Teddys Mom on 3/23/2007 http://www.cancercompass.com/message-board/message/all,10648,0.htm Thu, 04 Dec 2008 00:00:00 GMT Thu, 04 Dec 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ I was diagnosed with Bartholin Gland cancer in Dec. 2006. It is an even rarer form of Vulvar cancer. Has anyone out there ever had it? I'm just trying to find a kindred soul.Thanks. Teddys Mom Fri, 23 Mar 2007 00:00:00 GMT  On 3/23/2007 Teddys Mom wrote:I was diagnosed with Bartholin Gland cancer in Dec. 2006. It is an even rarer form of Vulvar cancer. Has anyone out there ever had it? I'm just trying to find a kindred soul.Thanks.I was diagnosed with Stage IVa Bartholin's Gland cancer in March of 2005 and had a modified radical vulvectomy plus lymph nodes removed on both sides since it had spread to the nodes.  My prognosis was poor.  Recovery wasn't easy as I had a bacterial infection which delayed my radiation and chemo, but in June and July I went through daily radiation  (5 days a week) and cysplatin chemo once a week.  I did pretty good with that, but one week after it was over I ended up in hospital with cellulitis - very painful.  I must admit that it took a while to get my mind around the prognosis, but I had to keep in mind because our cancer is so rare the data that the prognosis is based on is very limited.  Once I decided that, I thought wouldn't I feel foolish if I gave up my plans and then I didn't die!  However, that was easier said then done.  I retired in Sept 2005, but I had some other health problems through December of that year and had no energy at all.  January 2006 saw me getting my energy back and feeling as if I could do the things I wanted to do and my scans were clear.  So I sold my condo in Northern Virginia, bought a condo on the beach in Mazatlan Mexico, shipped my furniture in February, packed the car and cats in March and headed to Mexico.  I took my time with the trip (one week) and arrived here on 1 April 2006.  We have a great hospital that accepts my Blue Cross, I have one of only 20 board certified gynecological oncologists in Mexico here and he talks to my  doctor in Virginia.  My  scans are still showing no active cancer and I am doing those things we always talk about doing such as writing, painting and just relaxing on the beach.  I reached two years without recurrence this month.  I think that you have to approach this cancer as just another problem you have to deal with in your life and don't let it take over.  It has made me more aware of the enjoyments in life and I've stopped exposing myself to the things that really irritate me (including people).  I've been strong enough  to deal with the death of my mother and my aunt.  I live alone here with three Siamese cats, but I have Vonage so I talk to my daughter and friends in the States whenever I want and have made a nice group of friends here.  Once you get through the surgery, chemo and radiation, it is imperative to start looking forward and not to get frustrated at how long it takes to get you energy back.  Hang in there and remember to enjoy each day for what it is.  If you have any  questions or just want to talk feel free to email me.  Saludos.  Jacki Partridge   Jaxback Mon, 26 Mar 2007 00:00:00 GMT  On 3/26/2007 Jaxback wrote: On 3/23/2007 Teddys Mom wrote:I was diagnosed with Bartholin Gland cancer in Dec. 2006. It is an even rarer form of Vulvar cancer. Has anyone out there ever had it? I'm just trying to find a kindred soul.Thanks.I was diagnosed with Stage IVa Bartholin's Gland cancer in March of 2005 and had a modified radical vulvectomy plus lymph nodes removed on both sides since it had spread to the nodes.  My prognosis was poor.  Recovery wasn't easy as I had a bacterial infection which delayed my radiation and chemo, but in June and July I went through daily radiation  (5 days a week) and cysplatin chemo once a week.  I did pretty good with that, but one week after it was over I ended up in hospital with cellulitis - very painful.  I must admit that it took a while to get my mind around the prognosis, but I had to keep in mind because our cancer is so rare the data that the prognosis is based on is very limited.  Once I decided that, I thought wouldn't I feel foolish if I gave up my plans and then I didn't die!  However, that was easier said then done.  I retired in Sept 2005, but I had some other health problems through December of that year and had no energy at all.  January 2006 saw me getting my energy back and feeling as if I could do the things I wanted to do and my scans were clear.  So I sold my condo in Northern Virginia, bought a condo on the beach in Mazatlan Mexico, shipped my furniture in February, packed the car and cats in March and headed to Mexico.  I took my time with the trip (one week) and arrived here on 1 April 2006.  We have a great hospital that accepts my Blue Cross, I have one of only 20 board certified gynecological oncologists in Mexico here and he talks to my  doctor in Virginia.  My  scans are still showing no active cancer and I am doing those things we always talk about doing such as writing, painting and just relaxing on the beach.  I reached two years without recurrence this month.  I think that you have to approach this cancer as just another problem you have to deal with in your life and don't let it take over.  It has made me more aware of the enjoyments in life and I've stopped exposing myself to the things that really irritate me (including people).  I've been strong enough  to deal with the death of my mother and my aunt.  I live alone here with three Siamese cats, but I have Vonage so I talk to my daughter and friends in the States whenever I want and have made a nice group of friends here.  Once you get through the surgery, chemo and radiation, it is imperative to start looking forward and not to get frustrated at how long it takes to get you energy back.  Hang in there and remember to enjoy each day for what it is.  If you have any  questions or just want to talk feel free to email me.  Saludos.  Jacki Partridge Jacki,Thank you so much for replying. I was beginning to think I was all alone in my diagnosis. My cancer was State III. I had a modified radical vulvectomy and left groin lymph node disection on Jan. 31, 2007. The report on the lymph nodes showed one of the six they took out completely engulfed with cancer. Now I am having radiation treatments 5 days a week for 5 and 1/2 weeks. Had a bout of naseau the first week but now take compazine one hour before treatment and that works. I have other side effects I'm dealing with too, like my vaginal area is itching like crazy. I still cannot wear panties comfortably. I bought some really comfy stretch skirts and I wear those everyday. Of course, when I go out I suffer with panties but I pay for it when I get home. I am lucky as it could have been much worse. Also, my husband and I own our business and I do all the accounting and such. I have an office at home so that is where I have been working since the surgery. I am happy for you that you have made it through the 2 years with no recurrence. That is what I am hoping and praying for as well. Congratulations on your move to Mexico, it sounds so great to be right on the beach, and doing the things you love to do. Since I am only 53 it will be awhile before I retire. The recuperation period for the surgery actually made me miss work a little bit. Our business is seasonal, snow skiing in Colorado and Utah, so our season is winding down. After I finish my radiation treatments we have planned our summer with vacations alone and with family. It should be a good summer.I am looking up and looking forward to my life ahead of me. Thanks again so much for writing to me.Take Care, CeCe McGinnis, Kansas City     Teddys Mom Mon, 26 Mar 2007 00:00:00 GMT Your messages are really inspiring! Thank you. Although I don't have the same type of cancer, I have similar treatments and side effects. I finished radiation 2 weeks ago and I'm still on pain meds for the burning and itching. It helps. I've tried a variety of treatments including gel sheets (Gel Magic) the nurse sent and now I'm also using 99% aloe vera gel I bought at the health food store. The gel sheets have to be cut to size. I keep them in the bathroom with an ice pack and covered with a towel to keep it from thawing too quickly. Because of the location of the burn (vulva and vagina) it would be pretty hard to use the leaf of an aloe vera plant. Chris Cheech Mon, 26 Mar 2007 00:00:00 GMT  On 3/26/2007 Cheech wrote:Your messages are really inspiring! Thank you. Although I don't have the same type of cancer, I have similar treatments and side effects. I finished radiation 2 weeks ago and I'm still on pain meds for the burning and itching. It helps. I've tried a variety of treatments including gel sheets (Gel Magic) the nurse sent and now I'm also using 99% aloe vera gel I bought at the health food store. The gel sheets have to be cut to size. I keep them in the bathroom with an ice pack and covered with a towel to keep it from thawing too quickly. Because of the location of the burn (vulva and vagina) it would be pretty hard to use the leaf of an aloe vera plant. Chris  Teddys Mom Tue, 27 Mar 2007 00:00:00 GMT  On 3/27/2007 Teddys Mom wrote: On 3/26/2007 Cheech wrote:Your messages are really inspiring! Thank you. Although I don't have the same type of cancer, I have similar treatments and side effects. I finished radiation 2 weeks ago and I'm still on pain meds for the burning and itching. It helps. I've tried a variety of treatments including gel sheets (Gel Magic) the nurse sent and now I'm also using 99% aloe vera gel I bought at the health food store. The gel sheets have to be cut to size. I keep them in the bathroom with an ice pack and covered with a towel to keep it from thawing too quickly. Because of the location of the burn (vulva and vagina) it would be pretty hard to use the leaf of an aloe vera plant. ChrisChris,I'm sorry to hear that you are still suffering even 2 weeks later. Bummer! Last night I upped my pain meds from 1-2 pills every 4 hours (says 1-2 on the bottle, and I was only taking 1 at a time) and I sat in the bath until they took hold, about 40 minutes. That helps a lot. So, this morning I've followed the same pattern and it really is working, hurrah! I guess I just have to resign myself to being on the pain meds until the pain is gone, who knew? I am interested in the gel sheets you mentioned. Do you know where I could get some? I'm thinking that perhaps I could use one somehow when I do go out and about. I had a beautiful, huge aloe vera plant that I had tended for years. Well, last summer I put it outside and kind of forgot about it. I ended up with just a couple of shoots worth saving. I did use a couple of the shoots last night and this morning, it really seems to help. But my plant only has a couple more good ones left on it.  I'll go to the health food store & get the good stuff you mentioned. Thanks for writing and keep me informed of your progess. CeCe    Teddys Mom Tue, 27 Mar 2007 00:00:00 GMT  On 3/23/2007 Teddys Mom wrote:I was diagnosed with Bartholin Gland cancer in Dec. 2006. It is an even rarer form of Vulvar cancer. Has anyone out there ever had it? I'm just trying to find a kindred soul.Thanks. Hi,I've just been diagnosed with cancer of the Bartholin Gland, don't really know what to expect and would appreciate any feed-back.So far the plan of attack is both radiation and chemo... starting real soon.This whole situation has come as quite a shock.... went in for a smear Friday before last and came out with a biopsey (SP?).  Not good. Still really realing from that.  Any  how any advice is more than welcome.Thank you,Carrollee  Deeogeefan Tue, 26 Jun 2007 00:00:00 GMT I have been diagnosed with a Bartholin cyst. I did warm soaks and sitz baths. But its back and larger. The doctor says its normal. But everthing I read and googled sends me to cancer websites. How did yours start? Could you please describe. I wan t to g for a second opinion. I have never experienced this before, After reading from different websites I am truly scepticle of my doctors advise. I am praying for all of us those who have been diagnosed and those of us who hasn't. She did tell me it may come back but not larger and hanging like testicles. I am trying to figure out if I am on the right track or my doctor because this time the color has changed. I am scared. Tootie2 Fri, 06 Jul 2007 00:00:00 GMT  On 6/26/2007 Deeogeefan wrote: On 3/23/2007 Teddys Mom wrote:I was diagnosed with Bartholin Gland cancer in Dec. 2006. It is an even rarer form of Vulvar cancer. Has anyone out there ever had it? I'm just trying to find a kindred soul.Thanks.Carrollee,Sorry to hear that you have Batholin Gland cancer. Mine was diagnosed in Dec. 2006. I had a modified radical vulvectomy with left groin node dissection on Jan. 31, 2007. I was in the hospital for 5 1/2 days. I felt pretty good when I got home as long as I stayed on the pain pills regularly. I got the biopsy report on the groin nodes the following week. I had one out of six that was completely cancerous, so my gyn onc wanted me to have radiation. It was totally my choice at that point so I went and talked to the radiation oncologist and he explained all my options and answered all of my questions. He is a super doc and he said that with the radiation I would have a 95% chance at a cure. So, I had the radiation. I stared the second week of March and finished 16th of April. It was difficult but I believe it will be worth it. At least I know I did everything I could to get rid of the cancer. I will see my gyn onc every 3 mos. for 2 years and then less frequently, probably every 6 mos. for the remaining 3 years. At 5 years, with no recurrence they deem you cured. If you have more questions feel free to respond.Good Luck, CeCeHi,I've just been diagnosed with cancer of the Bartholin Gland, don't really know what to expect and would appreciate any feed-back.So far the plan of attack is both radiation and chemo... starting real soon.This whole situation has come as quite a shock.... went in for a smear Friday before last and came out with a biopsey (SP?).  Not good. Still really realing from that.  Any  how any advice is more than welcome.Thank you,Carrollee    Teddys Mom Mon, 09 Jul 2007 00:00:00 GMT  On 7/6/2007 Tootie2 wrote:I have been diagnosed with a Bartholin cyst. I did warm soaks and sitz baths. But its back and larger. The doctor says its normal. But everthing I read and googled sends me to cancer websites. How did yours start? Could you please describe. I wan t to g for a second opinion. I have never experienced this before, After reading from different websites I am truly scepticle of my doctors advise. I am praying for all of us those who have been diagnosed and those of us who hasn't. She did tell me it may come back but not larger and hanging like testicles. I am trying to figure out if I am on the right track or my doctor because this time the color has changed. I am scared.It never hurts to get a second opinion. At least then you know you have done everything possible in treating the problem. In reading up on my cancer I have found out that bartholin gland cyst's seem to be pretty common so hopefully that's all your's is.Good Luck, CeCe Teddys Mom Mon, 09 Jul 2007 00:00:00 GMT Dear CeCe,Thank you for sharing your story.  It is difficult to find anything about this cancer.I underwent a little office surgery yesterday for what appeared to be a Bartholin's abscess.  No abscess.  No cyst.  The doctor named off all the possible ones.  However, she is worried about cancer.On the internet last night I read that Merkel Cell cancer masquerades as an abscess of the Bartholin's gland.  Scary.The gland was so swollen.  I thought it was draining and going to be better but it was only the plasma portion of the blood. Do you have Merkel cell and do you know of any good web sites?I admire your courage to "haul off" and live on your terms.  Have you heard about the lobster march where you live?Blessings,Carolyn     Brady Fri, 21 Dec 2007 00:00:00 GMT  On 12/21/2007 Brady wrote:Dear CeCe,Thank you for sharing your story.  It is difficult to find anything about this cancer.I underwent a little office surgery yesterday for what appeared to be a Bartholin's abscess.  No abscess.  No cyst.  The doctor named off all the possible ones.  However, she is worried about cancer.On the internet last night I read that Merkel Cell cancer masquerades as an abscess of the Bartholin's gland.  Scary.The gland was so swollen.  I thought it was draining and going to be better but it was only the plasma portion of the blood. Do you have Merkel cell and do you know of any good web sites?I admire your courage to "haul off" and live on your terms.  Have you heard about the lobster march where you live?Blessings,Carolyn    Carolyn,My cancer was diagnosed as squamous cell, although almost all of the literature will state that cancer of the bartholin gland is adenoid cancer. I went online every day and searched for information. As you said it's not easy to find. How did we get so "lucky" that when we got cancer we got the rare type?I went to www.cancer.org, www.ncbi.nlm.nih.gov, www.cancercompass.com, and www.emedicine.com. These are just a few of the sites I used. I believed they were the most reliable and truthful. I also checked out other sites that popped up on searches but I didn't always put full stock in what they had to say. I also contacted my local cancer society and they sent me a bunch of reading material, good stuff.I'm coming up on my one year anniversary of surgery and have to admit that with each passing month the fear of recurrence has been fading. I have a check-up next week with my gyn oncologist and I anticipate all will be good. I don't go back to the radiation oncologist until April.I hope that you get some answers soon and perhaps it won't be cancer. I will keep you in my prayers. If you want to know anything else specific to my case just let me know.CeCe Teddys Mom Fri, 04 Jan 2008 00:00:00 GMT I was dianosed in July 2006 I had my Surgery in August 2006. I am so afraid even though I have made it to one year with no reoccurance. How are you doing? It would be nice to have a person who understands to talk to. Redjadefinder Mon, 21 Jan 2008 00:00:00 GMT I know how you feel. I have now made it one year since surgery but I won't pass the one year mark for the radiation treatments until April 2008. Really I'm just taking one day at a time. It can be hard to ignore every little new ache or pain, we always think it's the cancer coming back, don't we? There are days where it bothers me more than others. I have to make a conscioius effort not to dwell on it. Keeping a busy schedule is one way, you just don't have the time to bother with it. I also have a strong faith and praying regularly definitely helps me. I truly believe that it will get easier to ignore it with time. I wish you all the best. Contact me anytime.God bless you,CeCe Teddys Mom Mon, 04 Feb 2008 00:00:00 GMT  On 3/23/2007 Teddys Mom wrote:I was diagnosed with Bartholin Gland cancer in Dec. 2006. It is an even rarer form of Vulvar cancer. Has anyone out there ever had it? I'm just trying to find a kindred soul.Thanks.I wish I would have found this web site two years ago.  I was diagnosed with Bartholin Gland cancer Dec 2005.  Was referred to an OB/GYN Oncologist, had partial vulvectomy, left and right side lymph nodes removed Jan 2006.  Based on lymph node invasion cancer was classified stage IV.  I went through 25 radiation treatments 5 days a week and every Friday for 6 weeks spent the whole day in the chemo lab.  I returned to work Jun 2006 and now see my oncologist every six months.  The hardest thing was not having anyone that new anything about this cancer and for that matter most women aren't even aware what the Bartholin Gland is.  I finally told my doctor that my plan: I am going to remain possitive unless he tells me different.  I worked overseas for several years prior to diagnosis and now working out of state but, have decided to take early retirement and spend some much needed time with my kids and grandkids.  Charlene   CharleneN Wed, 12 Mar 2008 00:00:00 GMT Charlene,I too was happy to find this site. I have had correspondence with one other person who had the same type of cancer and she has been inspiring. She also decided to retire and enjoy life. Sometimes I wish I had that option but my husband & I own our business and we really only have about 6 months of really intense work and then 6 months that are not that bad. I'm 54 years old but have 12 Grandchildren and 3 Great-Grandchildren (my husband is 7 years older than me and had 3 children from previous marriage and we have 1 child together). All my "Grands" are special to me and they live here in KC, Colorado, Oregon and Germany. I have been fortunate enough to see all of them at least once a year and then enjoy the ones that live here locally. I can't really see myself retiring but that day may come. I'm lucky enough that I work a lot from my home office so when the kids visit I usually just work the morning and then we play the rest of the day.It's been a year since my surgery, modified radical vulvectomy with left node dissection, and almost a year since I finished 5 weeks of radiation. I had one positive node so the radiation was sort of a safety net (a painful one that's for sure). The radiated all the way around my pelvis just to be sure so I was burnt on both sides of my pelvic area, with it more intense on the left side where the tumor was. My last check-ups by the Radiation Oncologist and the GYN Oncologist were clear. I have to see them both again in early April. I have to admit I start getting just a wee bit nervous when it's that time again. But, I have a lot of faith in God and I've tried from the beginning to put this in His hands. Sometimes I succeed and somtimes I don't. I think your decision to stay positive is a good one. Also, being able to retire and spend more time with family is an excellent idea. I wish you all the best and please feel free to correspond anytime. CeCe Teddys Mom Tue, 18 Mar 2008 00:00:00 GMT I also have just been diagnosed with Bartholins gland cancer.They have opted for no surgery due to it being to close to rectal muscles etc.I am to start radiation 5 days a week for 6 weeks  now.My DR is still looking for a primary as he says this must be a secondary cancer. I am having trouble getting a prognosis as all the dr's here keep telling me it is rare and they are not sure.Did other people have dr's tell them it would be a secondary cancer.Just looking for any information at all.thanksMichele shall 3280 Thu, 31 Jul 2008 00:00:00 GMT Michele,None of my docs has ever thought that my bartholin gland cancer was a secondary cancer. It is very rare and according to my radiation oncologist that they follow what they know about vulvar cancer to treat it.The first gyn oncologist I went to see recommended radiation only. He was very stern and I did not care for him at all. It was like my questions were bothersome to him. Next I saw a femal gyn onc and she suggested she present my case at the tumor conference that she and her partners have each week. I agreed and their recommendation was surgery. That is the way I went. I also followed up with radiation for 5 weeks (5 days a week). It was tough but now a little after a year later I have pretty much healed. Don't get me wrong the modified radical vulvectomy and groin node removal is no picnic and neither is the radiation but I'm pretty much used to my now different private area. I wish you the best of luck. Correspond anytime if you have questions.God Bless,CeCe    Teddys Mom Sat, 09 Aug 2008 00:00:00 GMT  On 3/23/2007 Teddys Mom wrote:I was diagnosed with Bartholin Gland cancer in Dec. 2006. It is an even rarer form of Vulvar cancer. Has anyone out there ever had it? I'm just trying to find a kindred soul.Thanks.I was diagnosed with Bartholin Gland cancer in August of 2007 and it was the first case any of my doctors had seen.  After seeing 5 specialists they decided the tumor was too large to surgically remove and suggested radiation to reduce it with surgery to follow.  I have two 96 hour rounds of cysplatin and two 8 hour rounds of 5FU plus 30 radiation treatments and two blood transfusions.  When I had the follow up PET SCAN in Feb or 2008 the radiation onocologist had tears in his eyes when he told me it was gone. He told me then, he had never thought he would get that type of a response due to the original size. The cysplatin caused me to lose 50% of  my renal function and at one point I had gone into complete kidney failure.  I returned to work 6 weeks after treatment ended and have made a firm resolve that cancer controlled me through the diagnosis and treatment but it was not going to control my future.  I am well aware that it can and probably will return somewhere else but I refuse to worry about it every single day.  I am scared to death before each check up and say a prayer of thanksgiving when I get the all clear from the doctor.  I can't stop it from coming back if that is my future, but I am not going to let it ruin the time between now and then...We all have to live with the side effects of the treatment we underwent and some days are worse than others,but at least we are still alive.I hope you continue to do well,  It is good to find someone else that has gone down this road.  This type of cancer is so rare it is difficult to find people that have been there. Darlene BUTTERLFY Sun, 16 Nov 2008 00:00:00 GMT