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Positive pelvic washing

math
Posts: 1
Joined: Dec 2010

I am a 63 year old woman who had sudden vaginal bleeding after going through menopause over 20 years ago. I had a complete hysterectomy (ovaries, fallopian tubes, cervix) earlier this month for endometrium cancer (adenocarcinoma). The doctor said the pathology report was "good", ie., stage 1, grade 1, myometrial invasion < 1/2, no lymphatic/vascular invasion, cervix and serosa free of tumor, both ovaries free of tumor, sentinel lymph mode negative for carcinoma, 9 right pelvic lymph nodes negative, 16 left pelvic nodes negative. The pelvic washings were positive. The surgeon and the pathologist have said that they think the positive washing came from contamination during the surgery because the uterus was perforated during the procedure. (I had the robotic assisted daVinci procedure.)

At my follow up visit the doctor told me that except for the positive washings I would be only monitored every 6 months for 3 years and then annually after that. However, the follow-up treatment is less clear cut because of the positive washings, even though they think it was because of contamination. The doctor decided to refer me for genetic counseling to assess my family history, etc. My mother had cancer multiple times, including uterine and breast cancer in her 20s and 30s. But I am an only child have little information about other family members since I lost contact with them MANY years ago. So I'm doubtful what the genetic counseling will do to help.

I am interested in hearing from anyone who has had a similar experience of having positive washings in an otherwise "good" report. Megace was one thing the doctor through out as a possibility, but after reading the side effects I am hesitant to take that route. I am about 10 pounds over weight, take medication for high blood pressure, and am on medication for high cholesterol. I am physically active (I walk about 200 miles a month) and generally in good health. I am very conflicted about this and will appreciate hearing from anyone who may have had or know about positive washings in an otherwise positive pathology report.

Lisa 00
Posts: 134
Joined: Jul 2009

Greetings,

I only want to say that you might want to consider getting a second opinion from another gynecologic oncologist. It can be very informative and helpful in your search for information and options.

Becky444's picture
Becky444
Posts: 29
Joined: Jul 2010

Hi Math,

I, too, had positive washings after my hysterectomy. My surgery was Sept 2009 so I am a few months down the road. At the time, I was diagnosed as 3A because of the positive washings. I saw the radiologist for my 9 mth ck & she said if I were diagnosed now, it would be a Stage 1. I was diagnosed with UPSC & had 6 carboplatin/taxol and 5 brachy therapies. UPSC has a high recurrence rate too. Do all you can to prevent recurrence and at least you will have peace of mind. I know there are others on the board with UPSC & positive washings who recurred. They felt the positive washings were from a D&C two weeks before my hysterectomy.

Good luck to you & let me know what you decide.

Becky

Double Whammy's picture
Double Whammy
Posts: 2805
Joined: Jun 2010

I doubt your surgeon's feelings would be hurt if you got a second opinion. It sounds like he knows your uterus was perforated during surgery and is presenting you with the facts and statistics as he knows them, but leaving the decision to you. I don't know what I'd do, but I do think I would like some more information before I decide, i.e., hearing another expert opinion. I'm very naive about the nature of stray cancer cells of any grade, but I would be curious about the following: When a wash is done, is any fluid left behind - and if there are any cells left floating around somewhere that are the result of this contamination, can they "plant" themselves somewhere and grow? Does it really matter how cells got into the wash or that they were there? What's the liklihood that the mechanics of the wash itself didn't scatter the cells to other areas of the abdominal cavity? I know absolutely nothing about any of this, but these questions entered my head when I read your post.

Best of luck in making your decision. Please let us know.

Suzanne

Songflower's picture
Songflower
Posts: 631
Joined: Apr 2009

I had everything negative except serous in the uterus and positive washings. The positive washedings recurred into peritoneal carcinmatosis. I had HIPEC. Personally, I believe that intraperitoneal therapy is a good option if your washings are positive. I would also take some intravenous. You need a second opinnion. I've been through alot this year and wish I had had peritoneal washings treated with intraperitoneal chemo.

Diane

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

So far I haven't had any spread to the peritoneal cavity, but I keep waiting for that shoe to drop in one of these scans. I think the fact that I've been on chemo almost constantly for the last year is probably what has kept that from happening so far. Because of my positive washings, I did do 28 rounds of adjuvent IMRT pelvic radiation and am hoping that staves off problems in that area, although the peritoneal cavity extends above the pelvic radiation area, so who know?

I think IP chemo is well worth exploring; I know that's the route I will go if I have a recurrence in the peritoneum and my body is deemed strong enough to endure the IP treatments. I will have to travel to get IP, though, as my chemo oncologist feels IP is too harsh a treatment unless there is hope of a cure, which he doesn't see for me any more.

Speaking of the pelvic radiation, I did have a tidbit from my gyne-onc to share. We were discussing Avastin and its ability to cause bowel perforation if you have a tumor in the bowel anywhere. He said that Avastin is unlikely to cause bowel perforation if you have no cancer in the bowel area, but that if you have inflammation in your bowels from radiation, that may also make you vulnerable to bowel perforation if you take Avastin. He would hestitate to recommend Avastin for me for that reason. So that's another thing to factor in when you are deciding if adjuvant external beam radiation is right for you.

ratajczaktrudy's picture
ratajczaktrudy
Posts: 7
Joined: May 2013

Hi Becky how are you doing now. I had a robotic total hysterecomy two weeks ago. I had positive pelvic washing which also saids metastatic adenocarcinoma which I think was said because microscopic cancer cells was found outside the uterus. My doctor put me on megace for a year to see if it will stop cancer growthIf he told me I would have a laparoscope procedure to see if there is any tumor growth. My sister thinks I should have radiation to kill the cancer cells. My cancer was in the uterine wall superficially to the myometruim. I am not sure if I want to wait for a year to see if the megace works From what I here it doesn't cure he cancer but slows its growth. I Am only 52 with teenage kidDMSO I would like to be around a while for myself and them. 

ratajczaktrudy's picture
ratajczaktrudy
Posts: 7
Joined: May 2013

Hi everybody I hope somebody replies to my post. I hope a lot of you are still alive. Going into this uterine cancer I more or less was told you take out the uterus and everything including the cervix you chance of cure is pretty good. I have read a lot of stuff talking about cancer mestasticizing to different parts if the body. Everyone tells me you will be fine,but as a nurse I guess I am thinking the worse. I guess I would have feel better if there was no positive pelvic washing, then I read a post from a woman with no positive pelvic wash her uterine cancer had spread. My doctor told me if you get cancer uterine was the best to get. I hope some of you people out there has some good news. Thanks

ratajczaktrudy's picture
ratajczaktrudy
Posts: 7
Joined: May 2013

Hi everybody I hope somebody replies to my post. I hope a lot of you are still alive. Going into this uterine cancer I more or less was told you take out the uterus and everything including the cervix you chance of cure is pretty good. I have read a lot of stuff talking about cancer mestasticizing to different parts if the body. Everyone tells me you will be fine,but as a nurse I guess I am thinking the worse. I guess I would have feel better if there was no positive pelvic washing, then I read a post from a woman with no positive pelvic wash her uterine cancer had spread. My doctor told me if you get cancer uterine was the best to get. I hope some of you people out there has some good news. Thanks

light42day
Posts: 62
Joined: Mar 2012

I was diagnosed with Endo cancer stage 1a grade 2 Jan. 2012 and had the DaVinci surgery Feb. 2012.  It went well but I also ended up with a positive pelvic wash.  My Gyn/Onc is pretty sure that it happened during the D & C/ Hysteroscopy.  She have me a choice to just cont to get my 3 mo check-ups and watch it or do 3 rounds of Chemo.  I chose to do the Chemo and I'm glad I did.  I would always wonder if I should have done it (if I ever have a recurrance). 

HealNow
Posts: 1
Joined: May 2013

my experience so far....I had a total hysterectomy (Laproscopic/DaVinci) in January 2013. Tumor was grade 1/stage 1,  lymph nodes were negative, but there were endometrial cancer cells in my peritoneal wash. My doc suggested to treat it aggressively, but left the option to me. I chose to go aggressive. I am doing 6 rounds carbo/taxol chemo to hopefully destroy all those free floating microscopic cells. I just finished round 4. I thought that doing everything in my power now was better than wondering about what-ifs later.

All the best to all you strong women about there... Keep fighting.

Abbyldg
Posts: 2
Joined: Nov 2015

Hi! I hope you are doing well! I too had a positive pelvic was after robotic laproscopic hysterectomy.  My cancer was contained in my uterus was not outside my uterine wall at all. I had my surgery done in January 2012 in August 2014 I had a rectus sheath hematoma  in my abdomen muscle wall right between two of the incisions just above my naval. They did a biopsy & it came back negative. Here I am a year later, the same hematoma erupted again. Again a biopsy was done & this time it came back positive. I had a petscan done & it showed the cancer was contained in just this one tumor. The oncologist said it was the same cancer cells as the one I had in my uterus. He said things happen sometimes during surgery whereas the uterus gets punctured by an instrument and when the instrument is removed it drags the cancer cells & they fall off the instrument & get logged in another location in your body. He said not very common, but it can happen.  I am a lucky one. Right now I am taking medicine to reduce the tumor & will have it removed in January .  If it all come out clean then I won't even need radiation.  I am thankful that I got the hematoma twice.  It was very painful for about 2 1/2 weeks, but it was a good thing it happened.

Good luck!

Abbyldg
Posts: 2
Joined: Nov 2015

Hi! I hope you are doing well! I too had a positive pelvic was after robotic laproscopic hysterectomy.  My cancer was contained in my uterus was not outside my uterine wall at all. I had my surgery done in January 2012 in August 2014 I had a rectus sheath hematoma  in my abdomen muscle wall right between two of the incisions just above my naval. They did a biopsy & it came back negative. Here I am a year later, the same hematoma erupted again. Again a biopsy was done & this time it came back positive. I had a petscan done & it showed the cancer was contained in just this one tumor. The oncologist said it was the same cancer cells as the one I had in my uterus. He said things happen sometimes during surgery whereas the uterus gets punctured by an instrument and when the instrument is removed it drags the cancer cells & they fall off the instrument & get logged in another location in your body. He said not very common, but it can happen.  I am a lucky one. Right now I am taking medicine to reduce the tumor & will have it removed in January .  If it all come out clean then I won't even need radiation.  I am thankful that I got the hematoma twice.  It was very painful for about 2 1/2 weeks, but it was a good thing it happened.

Good luck!

Bluebird Bush
Posts: 28
Joined: May 2011

This is all very interesting information and thank you all for sharing your experiences and ideas on this subject. The pathologist found that both of my tubes were blocked and I wonder if that didn't help contain my cancer to the uterus and hopefully prevent it from spreading more. The only spread they documented was to two lymph nodes. The radiologist said there is a small nodule in one lung that wasn't there a year ago, but the oncologist's physician's assistant said that could be any of many things.

Thank you ladies for sharing so generously here, Geni

Gracegoi's picture
Gracegoi
Posts: 59
Joined: Aug 2011

Geni,

I decided to read it through a bit more slowly and it is informative. I was almost in Beckys shoes. They were going to do a DNC because a needle biopsy was not always reliable to test for cancer. I'm with Suzanne in I know little about the importance of pelvic washings I was unlucky finding information about how pelvic washings effect staging. It wasn't mentioned and I find it confusing you can be stage one with positive washings . I guess that may be what stage one with residual means .

I can see why its a good idea to have pelvic radiation as the minimum.

Good luck with the nodual Geni

Bluebird Bush
Posts: 28
Joined: May 2011

Hi Grace, You say pelvic washings is important - - - - I remember the afternoon after my surgery my oncologist-gynocologist-surgeon came into my room with a man she said was from quality control and told me everything went fine except that after they started working in me they realized one of the instruments was dirty (not her word), that it had been through the autoclave but they saw some dried residual tissue on it so apparently they washed me out with more fluid than usual and threw it away because the washings they sent to the pathologist was not all that much. When cancer cells break loose - like floating around in there, don't some of them possibly attached themselves in there and then start making their own little capillary connections? Is the reason there is a lot of recurrence in the end of the vagina where they sew you up because some cells accidentally get squeezed out through the cervix and then accidentally sewed up into that cut end where they sew it shut? This really is complicated and seems like it is full of ifs ands and buts. Thanks for any enlightenment you might send my way, Geni

Cookiemookie
Posts: 6
Joined: Oct 2011

This is exactly my situation.

Everything was good except for the washings.

My Dr has me on Megestrol. I haven't had any problems with it so far, no weight gain and I will soon find out if it has affected my blood sugar. I also have very difficult to control high blood pressure despite being on 7 different medications for it. This has been well before my cancer diagnosis.

I met with a radiation oncologist a few weeks after my radical hysterectomy in May. He presented me with facts and asked what I felt i wanted to do. It seemed to me at the time that it would be overkill for my situation. He agreed but said it was up to me. I went back to my gyn oncologist a few days after and he didn't seem comfortable not doing anything so he put me on the megestrol. I've had one pelvic exam so far and have a Pap in December. So we'll see what that brings.

I'm still not sure if I did the right thing.

If it wouldn't of been for that cytology report I'd be doing fine. It actually keeps me awake at night wondering if I did the right thing :(

Cookiemookie
Posts: 6
Joined: Oct 2011

This is exactly my situation.

Everything was good except for the washings.

My Dr has me on Megestrol. I haven't had any problems with it so far, no weight gain and I will soon find out if it has affected my blood sugar. I also have very difficult to control high blood pressure despite being on 7 different medications for it. This has been well before my cancer diagnosis.

I met with a radiation oncologist a few weeks after my radical hysterectomy in May. He presented me with facts and asked what I felt i wanted to do. It seemed to me at the time that it would be overkill for my situation. He agreed but said it was up to me. I went back to my gyn oncologist a few days after and he didn't seem comfortable not doing anything so he put me on the megestrol. I've had one pelvic exam so far and have a Pap in December. So we'll see what that brings.

I'm still not sure if I did the right thing.

If it wouldn't of been for that cytology report I'd be doing fine. It actually keeps me awake at night wondering if I did the right thing :(

Bluebird Bush
Posts: 28
Joined: May 2011

I hate that it keeps you awake at night worrying about your decision. Our diagnosis sure does impact our lives. Hope everyone has as good a day as possible - Geni

Gracegoi's picture
Gracegoi
Posts: 59
Joined: Aug 2011

I don't believe I stated that the pelvic washings were important , More that I did not know much about them. I would think they are though.

I'm sorry that happened to you. I'm not sure what to say about that except I'm concerned about what you wrote. I do remember when I read on this board after being diagnoised I read about possible contamination and the wonderings/ fear of cancer spreading through that.

Maybe some other people who know more about washings will chime in or start another thread just about pelvic washings.

You haven't done anything wrong Geni. It is an old post and sometimes people post once and don't return which is odd. Maybe she will return one day. Its the process thats important if this thread spoke to you its important for you.

Cookie if is any consolation, I wondered if I did the right thing . So far I have .

Grace.

norma2's picture
norma2
Posts: 486
Joined: Aug 2009

I see others responding to your post and you haven't acknowledge the response. Just wondering how you are doing since December, 2010. Hope you are doing well. Norma

Bluebird Bush
Posts: 28
Joined: May 2011

Hi Norma - - thank you for this. I didn't even realize what we were doing - - I am just sort of feeling my way around here - don't actually know what I am doing. I don't know much about computers and postings and etc so I pretty much need all the help I can get. Thanks. Have a good day, Geni

ratajczaktrudy's picture
ratajczaktrudy
Posts: 7
Joined: May 2013

To the person who had her surgery over a year ago with the posive washing did the chem work  to get rid of the positive washings. My oncologist said I wouldn't need chemo. But I would néed megace for a year then a laparascopy I am not sure what to do. My sister thinks radiation, but when I read about it it saids it increases risk of colon cancer which my Dad had 20 years ago. Not sure how quickly if the megace does not work and if the cancer spreads to different organs, there is not a lot of information out there and different web sites said different things and cancer has been around for a while so you would think doctors would know how to help people esp telling Pts that if you get cancer uterine is the best one to gdoctors dad cancer was over 20 years ago and he is still alive.

light42day
Posts: 62
Joined: Mar 2012

I'm considered to be free of cancer now after the chemo.  My last pelvic checks and ct scans have been good.  It will be 18 months at my aug. check up.  It's a hard decis ion-whether to have chemo or radiation or not.  You could get a second opinion maybe.  

Abbycat2's picture
Abbycat2
Posts: 572
Joined: Feb 2014

with your surgery in January to remove the tumor. I was diagnosed with UPSC, stage 3a in Oct 2013 with positive washings. Positive washings do not effect the stage of cancer. Did you have chemo or radiation after your hysterectomy? What was your stage and grade of uterine cancer? I had a cat scan last week and I remain NED. When I talked to my gyn oncologist about positive washings he said that a lot had to happen for these rogue cells to survive. For one thing, they need a blood supply. This is a 5-year-old thread and many of these women no longer post on this site.

Happy Thanksgiving!

Cathy 

sharidee
Posts: 1
Joined: Jun 2016

I had a complete Robotic Hysterectomy 6/13/2016, everything removed, 6mm tumor contained inside uterus, had not invaded outside the wall, no lymp node involvement, stage 1a MMMT Cancer, however there were cancer cells present in the wash that was done before the surgery.  So my question is, if the tumor was still contained inside uterus, why were there cancer cells in the wash?  I asked my Oncologist and she said that was a good question, but could not give me an answer.  Since mine was a 1a, I chose not to have the recommended chemo and radiation.  I went to Tiajuana Mexico to the Oasis Of Hope, and had 10 days of alternative treatments, infusions of VitB17, VitC, VitK, Minerals & Vitamins, and Ozone Treatments.  I'm also taking a lot of natural supplements, B17, Curcumin, Vit C, Vit D3 and much more.  I just got back 3 weeks ago, and I'll be having a Pet Scan in Oct which I'm nervous about getting.  I did my own research and there are natural cures out there for cancer, and Vit B17 is just one of them along with Vit C.  Has anyone else on here had a positive wash, and did not have chemo and radiation, and also went the alternative route?  I'd be interested in hearing your thoughts on this, thanks!

Sharon

Kvdyson's picture
Kvdyson
Posts: 789
Joined: Jan 2016

Hi Sharon, I was also diagnosed with uterine MMMT (1b) but went the traditional Western medicine route and had both chemo and radiation for my front-line treatment. I have been NED since June 2016. Have you heard of Angel Howerton? She went the alternative route with her Stage 4 MMMT and has been NED for 5 years. She has a website that you can find on Google. Good luck to you on your scan and treatments. Let us know how you're doing. Kim

Editgrl's picture
Editgrl
Posts: 903
Joined: Jun 2015

 I believe, from older posts, Cailfornia_Artist and bea-mil who did not have chemo or radiation. Calfornia_Artist posted extensively about alternative treatments, diet, etc.  Unfortunately, I do not know about the positive pelvic wash.  However, you might try searching some keywords, including curcurmin, Vitamin D3, alternative and see what pops up.  Though RoseyR went through chemo and radiation, she also used supplements and alternative treatments as well.  These women are not active on the board at this time, but their posts from years ago have a lot of information in them.

DSNYC's picture
DSNYC
Posts: 20
Joined: Sep 2016

HI Sharon

I just had a full hysterectomy, Aug 31, cancer was contained within the uterus, 8mm tumor removed, ovaries and cervix unremarkable but postive wash and multiple lymph nodes removed. I was told the cancer was grade 1 but because of the spread to my lymph nodes and postive washing it is now considered stage 3. I am meeting with a radiation and chemo doctor next week as my gyno oncologist is recommending both treatments. I am hesitant with radiation after hearing the horror stories, but considering chemo, (still scarey, hair loss? just found out everything today so dont even remember everything) however I am very interesting in alternative treatments and would love to hear how your alternative route turned out, how do you feel? When is your next follow up with oncologist and any new findings? please keep us posted

Diana

Mirabai
Posts: 9
Joined: Nov 2016

I also had a radical robotic hysterectomy- 12 days ago. and the pelvic wash was positive. I REALLY didn't want to have radio and chemo so was pleased when the oncologist said stage 1a grade 2 does not need it and that the free cells had no "tenticals" and were most probably from the hysteroscopy and curetting they did 2 weeks prior.I have started on an

I have started on an anti-cancer diet and supplements recommended by my Naturopath. A first she is resting my liver and kidneys  from the trauma of the anesthetic, then will get more aggressive. I have stopped all sugar and try to emphasise alkaline producing foods, plant foods, non-inflammatory foods.  Also, meditate and keep positive about the outcome.

Best wishes!

rcdeman
Posts: 214
Joined: Aug 2016

My mom is in the same situation as you, DSNYC. But with the difference that she has UPSC Stage IIIC. One of her pelvic lymph nodes showed cancer and her peritoneal washings came back positive as well. I'm the most concerned about the peritoneal washings coming out positive because that means the cancer is floating around her abdomen with the possibility of metastazing anywhere it goes. :/

Is there anyone here on these forums who have had good results/NED from chemo and radiation that had positive peritoneal washings initially?

Rebecca

DrienneB's picture
DrienneB
Posts: 182
Joined: Aug 2013

Rebecca,

My gyn/onc who is head of the dept. at Stanford University and is a researcher for curing ovarian cancer - said that the research does not show that pelvic washings positive for cancer cells indicate a higher risk for tumor recurrance than negative wahsings. He believes that one should treat high grade (3) uterine cancers with most severe treatment, no matter what the staging is at diagnosis/surgery. it was in the context of guidelines for treatment that he stated what he did about pelvic washings. As has been said on this board, positive pelvic wasings are common. Of course much is unknown, but that issue alone might not need to be a cause for fear.

-j

rcdeman
Posts: 214
Joined: Aug 2016

Thanks for this, DrienneB. I'm concerned that positive washings mean that cancer cells are floating around the peritoneal area with the ability to just land anywhere and start multiplying. It's a scary thought, but your words have given me a bit more hope. As it is right now, it seems my mom will be undergoing an intensive sandwich treatment with chemo followed by chemo at the same time as radiation and then more chemo to top it off. I've heard this treatment is particularly hard on the recipient so I am concerned that the doctor is overestimating my mother's overall physical health. She's 66, and not quite a spring chicken anymore.

Thanks for your encouraging words!
Rebecca

DrienneB's picture
DrienneB
Posts: 182
Joined: Aug 2013

Hi Rebecca,

What Kathy G said about those cells needing a blood supply to get their footing, is probably right. And just to add another person's data into the mix, I also had a positive pelvic washing, and was staged 3C for carcinosarcoma/MMMT (another grade 3 tumor cell type) and have been NED since diagnosis in May of 2013. I had the carboplatin/taxol chemo regime alone. My choice not to have radiation was not easily made and was a twisted road I'd rather not describe here. These decisions are really hard. I think there is satisfaction in knowing that you're doing all you can do. Will pray for you and your mom.

-jane

rcdeman
Posts: 214
Joined: Aug 2016

Thanks Jane, do you think you can personally message me on why you decided not to go through radiation? We are confused right now and I'm concerned about the long-term effects that radiation has on the body and how it will effect quality of life. Just PM me or I can PM you my email.

Thanks!
Rebecca

Soup52's picture
Soup52
Posts: 662
Joined: Jan 2016

I had a positive wash also and so far I am NED. My chemo ended in June and I had radiation internal and external before. My scan end of June came back clear. I go back to dr. In October with another scan in December. I'm praying for continued NED.

rcdeman
Posts: 214
Joined: Aug 2016

Love it, Soup! This makes me feel a lot better!

Will pray for your continued NED!
Rebecca

Mirabai
Posts: 9
Joined: Nov 2016

I had my radical Di Vinci hysterectomy +sential nodes 10days ago. It was fully contained - but like many of you, the pelvic washing came back positive. My surgeon suggested probably due to the hysteroscopy and curettings 2 weeks prior, which upset me as I had initially asked for that procedure to be bypassed as I feared that very thing. I really don't want to take radio and chemo. The oncologist has graded my endometrial cancer at stage1A grade 2 and suggested no further treatment, just follow up every 3 months.  I am scared and it is affecting my sleep. Did I do the right thing telling him I didn't want further treatment? Is that why he didn't offer it? What can I do to increase my chances of killing those cells? Why didn't they wash them all out then wash around a little chemo? I hate that everything was good but now I am playing the waiting game, my head won't stop thinking 'what if', and can't really relax. I want to do everything that I can naturally do to increase my chances of long term survival. Any suggestions re diet, supplements etc?

 

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1301
Joined: Jun 2015

Mirabai,

Welcome to our club and sorry you needed to join us! If you are uncomfortable with the recommendations, please get a second opinion. I don't believe your oncologist would not suggest further treatment if they believed you needed it. They have an obligation to give you the full picture even if you say you don't want to do something.

Just hearing the word cancer is a scary thing. You will be fine. It just takes a while to get to the point of acceptance and learning to live with it. If you continue to have anxiety, please ask for a mild anit-anxiety med to help you through this part of the "treatment"... Hang in there and come back with any questions.

Love and Hugs,

Cindi

Mirabai
Posts: 9
Joined: Nov 2016

Thanks Cindy, yes it is all an emotional shock and I had had an awful dream about recurrence the night before I posted, however I now have a plan supervised by my excellent, experienced, and trusted naturopath who has got me through CFS/ME, so I am in a much better place now. I think that taking a step, having a plan, doing something whatever it is, is important - even if its effect is placebo. We must have faith in something.

Nellasing
Posts: 528
Joined: Oct 2016

Glad your surgery was 10 days ago and that you didn't mention feeling bad from it.  Hope you are recovering quickly and well.

I agree with Cindi, the Dr. would tell you exactly what they tell everyone they see no matter if you had expressed not wanting to do something or other.  My Dr. had her hands full with me questioning everything at every turn.  That's ok, it's their job.  In the end you will need to do what you need to do to live with it.  As for me, I did an integrated approach with my gyn/onc and my Naturopath supporting my healthy body through treatment.  I believe it worked really REALLY well as I didn't have as hard a time of it as many and the only lasting effect is a bit of neuropathy in my feet so far.

I would suggest that you find a certified naturopath, with experience in oncology, if you want to explore what else you can do.  This stuff is complicated and you do want to give yourself every advantage.

Glad you found this group of ladies- they have so much knowledge and caring- I didn't find them til after I was finished with chemo.  You really can ask anything and there is most always someone along pretty quickly to lend a shoulder or tell their story.

(((HUGS))) as you find your way- they say once you choose your path walk straight ahead with confidence and don't keep looking back and doing the what if- a LOT of the battle field is in the mind ;) 

Mirabai
Posts: 9
Joined: Nov 2016

Thanks for your wise words. I am glad I found this group and know that supportive sisters are very important in recovery.

Though my op was very recent I have really had a fast recovery with little pain. The worst was the shoulder tip pain from the gas and then the bloating which went on for a week. Almost back to normal now with all 6 abdominal wounds healed and I am not even up to 2 weeks post op!

:-)

 

Kvdyson's picture
Kvdyson
Posts: 789
Joined: Jan 2016

Hi Mirabai, I'm sorry that you're feeling scared and not sleeping well. That is a natural feeling when you get a cancer diagnosis. I don't have any suggestions for diets or supplements but will say that just being a part of this support group has made a world of difference for my mental state. These are wonderful people who have been through just about everything imaginable and have lived to fight another day. Good luck to you and don't be a stranger! Kim

Mirabai
Posts: 9
Joined: Nov 2016

Thanks Kim, I am feeling more positive today after seeing my trusted Naturopath yeasterday and I have a plan. She has given me an anti-cancer diet to follow and an herbal mixture plus supplements. Gentle at first, then more aggressive after a few weeks. I am also meditating and feeling grateful that I don't need chemo/radio, then it was contained, reasonably early and I didn't need that body part!

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mpkelynch4
Posts: 1
Joined: Nov 2016

It has been such a help to read all of your postings. Thank you so much for sharing. I also had a total hysterectomy on Oct. 11. All went well with exception to positive cells in the belly fluid. As many of you have said, who knows where they came from? I have been put on Megace (Magestrol) for 6 months. Only been on it a week, but sure hope not to gain any weight. Already gained 50 lbs. with menopause. 7 years of debilitating hot flashes....and the beat goes on! I already told my kids to be ready for me to be moody in the coming months. I also saw a genetic counselor to check for Lynch Syndrome--a gene line mutation. The recommendation was to not worry about this as there was not enough family history of cancer to support it. It's a lot more scientific than that, but you would need to read Methylation for Dummies to get a clue. I will be keeping up with my 90 day check ups and keep you posted. I wish everyone a blessed and healthy holiday.  Priscilla

Nellasing
Posts: 528
Joined: Oct 2016

Welcome- so glad you were able to get some good info. reading the posts!  So sorry you have had a scrape with this thing!  You didn't mention the pathology of the hysterectomy- was it only positive in the fluid?  I know, the weight gain is the worst!!!  I am fighting that tooth and nail :( 

Please come any time for support, questions, venting etc. etc.  So many of these ladies have such amazing information to share.  All the best as you move forward.  Look forward to seeing your updates.  (((HUGS)))

Mirabai
Posts: 9
Joined: Nov 2016

My Radical Robotic Hysterectomy was 2.5 mths ago now. I was all clear except for pos pelvic washings. I am recovering well. No chemo or radio and visit my Naturopath and Holistic Doctor regularly. I am about to start on weekly Vit C infusion, with other goodies added. He asked for a blood test which had to be sent to Germany and cost ~$Au650. It is for circulating Tumour Cells, so we know what we are up against. It seem a very sensible starting point and I wonder why it is not more easily/cheaply available.  I am also watching Tye Bollinger's Video series "The Truth about Cancer" and have purchased his book.

My diet has changed significantly - no sugar, gluten, dairy and mostly vegetarian. I have lost 10kg in the past 3.5 mths.

I have been told that endometrial cancers are sensitive to insulin and to estrogen (of course) so I am watching those too. Also the emotional cause being around problems with sexuality and reproduction, which I sure have had. My doctor suggested EFT (Tapping) to bring up stuff and deal with it.

So all in all, I am doing OK, so far!

 

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Kvdyson
Posts: 789
Joined: Jan 2016

Mirabai, so good to hear that you are recovering well. It sounds like you have a good medical team helping you and a good head on your shoulders. Hopefully the treatment the doctor is recommending will help you deal with the emotional side of this diagnosis. Let us know if we can help, too. We're here for you and no topic is off-limits.

Nellasing
Posts: 528
Joined: Oct 2016

Wow- you've jumped on that and are doing such great work to heal and being so proactive- GOOD JOB!!!  I'd be interested to know how the EFT goes for you.  So glad you are doing ok so far.  Thank you for coming back and sharing that with us all.  (((HUGS)))

PS  I wish things were more easily/cheaply available also but alas then the money machine would stop for some ehh?

Kamushka
Posts: 22
Joined: Feb 2017

My robotic hysterectomy resulted in negative washing and my lady parts came out intact. I had a malignant tumor that was inside a polyp in my uterus. The tumor had not gotten into the uterine wall but MD Anderson found a tiny cancer cell in one of the Fallopian tubes which gave me a stage III and six rounds of chemo. After my last round of chemo in February, I start radiation daily in March for five and a half weeks in the pelvic area. The only thing the negative washing saved me from was internal radiation..mine are all scheduled externally.

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Kvdyson
Posts: 789
Joined: Jan 2016

Kamushka, I am sorry to hear this diagnosis but it sounds like you have a great medical team giving you the best care. I also had both chemo and external radiation. Thankfully, the side effects of both were expertly managed and I did not suffer badly. I hope that your experience is the same. Let us know how you are doing as treatment progresses. Kim

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