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S/P TAH BSO= Status post total abdominal hysterectomy bil salpingo oophrectomy

wisegal2323's picture
wisegal2323
Posts: 8
Joined: Jul 2021

Happy July 19th, my day of discovering I have high grade endometrioid adenocarcinoma FOGO grade 3, what a mouthful!

I am 3 weeks postop and my very fisrt surgery ever, at age 69...lucky me. I felt the surgery was easy, almost pain-free too....only took 3 tramadol 50mg once discharged. I just happen to be a RN and wow it feels awkward being on this side of the bedrails. I have to admit my care has been stellar, great great people so far. 

So now, 1st postop visit to surgeon and pathology preliminary report  is available.....see above. MRI showed no invasion anywhere else....lymph nodes etc....only inside the fibroid inside my uterus. The Gyn suggested her fav onc, and said he would likely recommend radiation. My opinion is to see him, have the PET scan which they give an IV type of sugar that will be absorbed by the cancer tumors and shows the "hot spots". I am betting that I won't have any hot spots since all other tests preop showed no cancer and they removed my uterus where the cancer was found by a pathologist.

Anyone else have this type of experience? 

I will add to my story as it goes.....what a great site.......Tip of the day....eat no sugar.....cancer thives on it.

Wisegal2323

 

Forherself's picture
Forherself
Posts: 565
Joined: Jan 2019

Sorry to read about your diagnosis.  I am also an RN who had cancer cells confined to a polyp.   My diagnosis is serous endometrial  intraepithelial carcinoma.   Did your GO tell you your stage?  It sounds like you had no residual malignancy in the hysterectomy specimen.  Is that right?  You can read my story if you click on my name.  

It is really different being the one TOLD you have cancer.  I was shocked at how I felt, and did not know how my patients probably felt.   I am just 3 years out now.  Do you have other questions?

Sue

wisegal2323's picture
wisegal2323
Posts: 8
Joined: Jul 2021

Thanks for posting so fast, I must admit, since I am not sharing my news with anyone other than the people on this site, it is nice to have some feedback. I also wrote in my blog if you care to read it. I am not sure what residual malignancy means.....what I gather is the cancer was contained inside the fibroid inside the uterus.

I'm glad you chose no treatment. I think they are way to eager to treat suspicious dx's. I frequent websites like The Truth about Cancer, https://sq1.chrisbeatcancer.com/20q-optin   mercola.com Green Med Info and many more for years.

My path report still has some pending results and I have another GYN appt in 3 weeks. The ONC's office just called me to say your 1st appt is this Friday July 23.....see how fast they are...just was at GYN's office Mon July 19.....same week.....egads....and please fill out 16 pages of new patient info......what happened to the elctronic med record and these offices sharing the info.

I need to stay in control of my life....I am not going down this path....I feel great, look great, have tons of energy and am happy. 

Be well, Wisegal

 

MAbound
Posts: 1153
Joined: Jun 2016

It sounds to me like you are first being sent to a GO after your surgery. Is that right? The cancer found was a surprise?

It sounds like you know the type and grade from the pathology, but I'm not seeing that you were staged or had any sentinal lymph nodes taken for pathology or a pelvic wash and now they are sending you for a PET scan to look for any cancer that may have been missed because the surgery wasn't done by a gyn oncologist?

If that is the case, I would be a bit concerned about just having radiation for a grade 3 tumor, even if it is adenocarcinoma rather than one of the more aggressive types. Radiation only treats what it is aimed at and even a PET scan is no guarantee that they'll see anything microscopic whereas chemo is a systemic treatment and more likely to get stray cells. If nothing else, getting second or even third opinions about how to proceed under such circumstances might be prudent if the cancer found by the pathologist was a surprise.

We're always concerned when someone other than a gyn oncologist does the surgery, because they are the ones who have the specialized training needed to handle the tissue in a manner to guard against cancer cells escaping into the body from the tissue removed during the procedure. I hope I'm just not understanding your circumstances, but wanted to make you aware of those concerns, just in case. Have they saved your tissue in case it's needed for other testing?

Forherself's picture
Forherself
Posts: 565
Joined: Jan 2019

There is no stage yet.  Sometimes the gyne oncologist wants to follow up with staging surgery.   And I don't think MRI is the best imaging to find any other lesions.   Incomplete staging at this point.    Wait for the consult results.  So far so good.  At this point, the next step with a Gyne oncologist is a good one.

 

wisegal2323's picture
wisegal2323
Posts: 8
Joined: Jul 2021

I will have to address your concerns later as I don't have the answers right now. I just cancelled an appt Friday with the ONC my surgeon referred....apparently all they do on this 1st appt is labs, which are resulted right then and there, CBC and CMP only. I am not staged. I will research for a complementary team, thanks for the suggestion... 

Looks like we have similar tumors but I have no noted involvement outside of the uterus. The path report is not finalized yet, I'll be checking this site, probably daily, my new best friend so to speak......lol....thanks

 

Harmanygroves's picture
Harmanygroves
Posts: 229
Joined: Jun 2021

Welcome to the club no one wants to be a member of, but boy oh boy, you found the other wise gals in this site. May I be the first to congratulate you on finding this discussion board. It took me months, and sadly, months of anguish! I'm so glad that you're here. You sound like a sassy lady with a lot of education and experience on the "easier" side of the bedrails.

I'm also someone who had the Hysterectomy/BSO for adenocarcinoma. Click on my name to get my full story, but I'm still kind of reeling from what a busy year it's been. I was formally diagnosed in mid February, and had the big surgery in late March. On July 1st, I completed my brachytherapy radiation treatments, and now I'm getting back on my feet and trying to live normally again.

As a person with a high intermediate risk of recurrence (LVSI and deep myometrial invasion), I'm a little paranoid, but soon I'll get better at coping! Right now, let's talk about you (wink wink). I'm glad to welcome you!

wisegal2323's picture
wisegal2323
Posts: 8
Joined: Jul 2021

I can say I really enjoyed reading your info, sad as it was at times. Amazing how you captured my emotions, happy, sad.....I haven't cried yet, and I don't think I will as I don't feel hopeless or even that sad....cancer is expected in this toxic world so I am prepared. Most people eat for pleasure instead of for what our bodies need. I eat organic about 75%. I have researched the dietary aspect of life more and found that we really need hydrogen.....and how do we get it.....I bought an Aquacure machine from George Wiseman, the inventor. I have had it for 1 month. 

I think everyone needs one of these machines.....best money ever spent, $2100.00.....how much is your health worth? I loaned my machine to a friend who has health issues that affect her daily and after 3 days using it, she feels fantastic! No more migraines, no muscles spasms, she has energy, she feels happier, she feels healthier.....3 days use.....15 munites 3x/day breathing the hO gas and drinking the HO Brown's gas water.....research  myaquacure.com/faq

Anyhow, life goes on.....so nice to meet everyone......stay positive and keep love and God in your daily life, be well.....Wisegal

 

 

ConnieSW
Posts: 1576
Joined: Jun 2012

MAbound expressed my concerns better than I could.  Do clarify for us, wisegal

MAbound
Posts: 1153
Joined: Jun 2016

Your situation is kind of setting off some alarm bells. This is not the time to be going to your gyn/ob's "favorite onc" but rather to a gynecological oncologist who specializes in women's "below the belt" cancers. If this "favorite onc" is not one, you need to ask (i.e. insist) for a referral to one to get things back on track for you.

A grade 3 adenocarcinoma has a higher risk for recurrence even if it is caught at an early stage and since frontline treatment is your best shot at being cured, this is the time to have the right doctor treating you. Once this cancer recurs, it is not considered curable. You really want to avoid that scenario by not being passive about the care you are receiving now. 

I see from your blog that you'd prefer to follow a Holistic approach and wonder if you wouldn't consider a Complementary approach as many of us here have done. Such an approach gives you more tools to work with and one supports the other to get you to NED and to stay there.  It's something else to look into as you wait for future appointments and testing.

 

alicia2020
Posts: 162
Joined: Sep 2020

I'm glad you found us, sad as we are that you needed to come looking.

I know you want to be optimistic, but I'm a little confused about exactly what your situation is and agree with these wise women who have already responded. Tread carefully with diagnosis and treatment! I'm one of the unlucky women who had to have two surgeries. Hysterectomy first and then a staging surgery. I think the PET can be very helpfu, but I think most of us worry that if you didn't have staging, that no one can really put together the most effective treatment plan. If my GYN ONC had not gone in for the second surgery, I would not have had the benefit of "optimum debulking," have had 4 tiny tumors still growing, and would not have known that all lymph nodes were OK. Hard as the road has been, I believe it's what's allowed me to recently declared as in remission. 

And you probably know this, but it IS very important, that the grade 3 cancer is a very different animal than the lower grades. So it's very important to get your treatment right originally to prevent any recurrence.

We're here for you! Ask anything you like! Hope the PET results are good!

😎, Alicia

 

Harmanygroves's picture
Harmanygroves
Posts: 229
Joined: Jun 2021

Many of us have a somewhat "reserved" trust of the western medical machine. Having to go back in to do staging or debulking is stressful and can be worrisome.

Alicia, in particular, you've been through this and again, I've read your story many times to glean information.

It seems to me that Wisegal may have gone in for a hystrectomy BSO (bilateral salpingo oopherectomy) because of a symptom? Maybe she was bleeding?

Some material was removed and biopsied, which she expected and anticipated?, but now it's showing up as high grade? 

Perhaps a gyn onc did not do the surgery, but now she's being sent to one for information, advice, staging surgery? That's what I've surmised. Could be wrong!

Okay, let's keep an eye on this thread! Wisegal, you are surrounded by love and friends here. I think it's possible to both choose not to "go there" and get wrapped in dread and worry, but also to be mindful and aware of all the floating variables, particulary as you become extremely knowledgable about how other women have approached their treatments and therapies. You are focusing on health and holistic healing, all good. Just listen and learn, and we will follow your story. The elders here will advise you. 

wisegal2323's picture
wisegal2323
Posts: 8
Joined: Jul 2021

Hi everybody, I am just doing research and using my aquacure machine.....focused directly on my pelic area.....lol...high dose hydrogen gas.....I also use 28% sodium chlorite. Both of these show strong positive results in eliminating diseases, all of them. I appreciate everyone's beautiful stories and love....hope to go to PET scan with nothing to show

I am doing the intermittent fasting and today I woke up in ketosis, was so happy....I have about 30 more pounds to lose.

Once I am able to get physically active again,(I am 3 weeks post op) I will be back on the pickleball court getting my Vit D....and golfing. I feel like I could play now, no pain, good energy etc....can drive July 26, Monday. Surgery was June 28th. I see the non gyn onc whose office is practically across the road on Monday, but in his group is a female gyn onc 45 minutes away....I have asked that they share me.....

Anyone heard of a thermogram....kind of better than mammogram as no radiation, nor flattening of the breast. Do you ever wonder why this is not covered by insurance as it detects anything way sooner and could be used in conjusnction with mammograms. So many natural treatments not covered, forced to pay up or take the harsher treatment for free.....we need life to be fair.

 

Thanks sista's.....see you out there, love long and prosper!

 

Forherself's picture
Forherself
Posts: 565
Joined: Jan 2019

But just to be fair, there is no scientific evidence that thermograms detect cancer, so there is that.  i will stick with a yearly mammogram.  

Harmanygroves's picture
Harmanygroves
Posts: 229
Joined: Jun 2021

I lived in SE Asia for nearly a decade, so have tremendous respect for eastern medicine, to be honest---that said, I am not much of an "experimental" treatment girl. 

I was grateful for my mammogram this year, as they took more pictures "further down" of my lymph nodes in my arm pits, as I expressed my fear over my cancer having moved around. 

BluebirdOne's picture
BluebirdOne
Posts: 454
Joined: Jul 2018

https://www.fda.gov/consumers/consumer-updates/breast-cancer-screening-thermogram-no-substitute-mammogram  The whole artilce is quite interesting. I had never heard of thermography before. 

The FDA has taken regulatory action (including issuing warning letters) against health care providers and thermography device manufacturers who have tried to mislead patients into believing that thermography can take the place of mammography. To protect the public health, the FDA’s regulatory actions can include scheduling a regulatory meeting, sending a warning letter or other correspondence, conducting an establishment inspection, or other actions as appropriate.

Tamlen's picture
Tamlen
Posts: 319
Joined: Jan 2018

I hesitated to chime in here when I first saw the reference to Mercola, but as this thread reads increasingly like an ad to promote Mercola (first, his cancer treatments, then thermograms), I decided I wanted to speak up. Wisegal, you will, of course, do what you will do, and I am not the least bit interested in getting into a debate with you about it.

I'm adding this note for future readers of this thread who are desperate, fear chemo and radiation, and might not be aware of all the controversy surrounding Mercola and his "theories."

Dr. Mercola is a promoter of thermograms (and received the FDA warning Bluebird mentioned above), unproven "natural" treatments for cancer, and most recently, has been an outspoken covid anti-vaxxer. He's one of the "Disinformation Dozen" identified for spreading the vast majority of covid fake news.

I'm stepping out of this conversation now and hope that future readers of this thread do their careful due diligence.

Harmanygroves's picture
Harmanygroves
Posts: 229
Joined: Jun 2021

Just throwing in my two cents. 

wisegal2323's picture
wisegal2323
Posts: 8
Joined: Jul 2021

I shall keep my keyboard shut.....but I am not changing my mind...good luck!

Harmanygroves's picture
Harmanygroves
Posts: 229
Joined: Jun 2021

I've been watching this story build. I think you've called it. 

alicia2020
Posts: 162
Joined: Sep 2020

Just wow. Thank you for standing up for us, Denise. Thank you. Thank you.

❤️❤️❤️, Alicia

alicia2020
Posts: 162
Joined: Sep 2020

I was very interested in what you wrote, Tamlem, so I did some Googling and found that just today both the Seattle Times and The New York Times have headlines and articles about Mercola...both titled, "The Most Influential Spreader of Coronavirus Misinformation Online." So, he's apparently more than just a part of the "Disinformation Dozen," he's a ringleader.

❤️, Alicia 

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1802
Joined: Jun 2015

Bluebird and Tamlen, Thanks to both of you for speaking up. 

Love and Hugs,

Cindi

BluebirdOne's picture
BluebirdOne
Posts: 454
Joined: Jul 2018

I see our group as kind of a holy space. I am not at all religious, respect those who are, but this is how I see this place. Holy because we can look back at our sisters, those who made it, those who didn't, those who continue to fight with a great deal of love and admiration, and having it sullied by someone seemed just not right. 

xxoo

Denise 

Harmanygroves's picture
Harmanygroves
Posts: 229
Joined: Jun 2021

I'm grateful to those who have gone before, and we are going to do everything we can to honor those ladies, including so many this disease has claimed. 

Therefore, I will respect this space! I'm clinging to the knowledge and experience. 

wisegal2323's picture
wisegal2323
Posts: 8
Joined: Jul 2021

Hello, I am sorry you guys are not into natural alternative treatments. But I am, and I will share with you I had a rare form of AGGRESSIVE CANCER, LARGE CELL NEUROENDOCRINE CARCINOMA. I went to Florida Cancer Specialists in Brooksville Fl. Had a CA125 and a CEA drawn, both negative, PetScan/Catscan done today, negative. What did I do for my own treatment, I took sodium chlorite 3 drops every hour x 8 hrs for 2 weeks. I used my hydrogen AquaCure machine at night and drank the bubbled water it produces called Brown's gas and electrically expanded water. My surgery was done June 28th......I am grateful to the Lord I am cured. Take good care .....April

Harmanygroves's picture
Harmanygroves
Posts: 229
Joined: Jun 2021

Many of "[we] guys" are indeed into "natural alternative treatments," and your approach at criticizing others in their treatments and then promoting the Magical Hydro Bubble Machine Cure reads like a sales pitch. I have reported your post as such to CSN. 

 

Spydergal's picture
Spydergal
Posts: 47
Joined: Jul 2021

Just be aware any of you Florida Gals that According to the Fort Myers Press - The Department of Justice, Tampa, investigated Florida Cancer Specialists and its founder in 2020. Florida Cancer Specialists agreed this spring to pay $100 million in federal penalties and $20 million to the state of Florida related to the same allegations.

Related coverage: Florida Cancer Specialists agrees to $120M in antitrust-related penalties

More: Florida Cancer Specialists, fined $120M for monopolizing cancer treatments, gets $67M in CARES Act funds

BluebirdOne's picture
BluebirdOne
Posts: 454
Joined: Jul 2018

First of off you came here stating you have "high grade endometrioid adenocarcinoma FOGO grade 3", now you come back stating you have "AGGRESSIVE CANCER, LARGE CELL NEUROENDOCRINE CARCINOMA".  What is next? Glioblastoma? Bone cancer? I guess you can just make it up as you go along. Second, a CA125 does not give a negative reading. It is a numerical reading, never positive or negative. CEA test is not even given for endometrial cancer, and is not expressed as a positive or negative, it is numerical. Scan results are not expressed as positive or negative, they simply report what they see. You must think we are a bunch of idiots who just swallow your lies.  This is a board for serious, honest people, women actually suffering who have to look at these posts and see easily disproven lies. Sadly, managment does not allow me to express how I really feel about you, but suffice it to say you fool no one. 

Forherself's picture
Forherself
Posts: 565
Joined: Jan 2019

This information does not tally.  The CA 125 caught my eye too.  

BluebirdOne's picture
BluebirdOne
Posts: 454
Joined: Jul 2018

Specifically, the companies agreed that Florida Cancer Specialists would not offer radiation cancer treatments in Southwest Florida and that the unnamed company would not offer medical cancer services, according to the Justice Department.

The Justice Department referred all questions to the U.S. Department of Human Services, which is charged with policing health care organizations. When asked for a comment, HHS released a statement noting that health care organizations misusing the funds face financial penalties.

“Failure to comply with any term or condition is grounds for HHS to recoup some or all of the payment from the provider,” the statement said.

Dak82's picture
Dak82
Posts: 81
Joined: Dec 2020

You ladies were on top of this scam! I have noticed that FB pages are full of discussions of alternative treatments primarily in the form of supplements to enhance various treatments. Always do your own research! Really? Bubbly machines?

Cheers,

Deb

Harmanygroves's picture
Harmanygroves
Posts: 229
Joined: Jun 2021

But I really don't do sugar like that anymore, of course! Seriously, I've researched the bubble water machines, and someone is definitely trying to make a sale here. I am not persuaded. Sheesh! You can't BS a group of women as knowledgable as those in this site. We've done our homework, and then some. 

alicia2020
Posts: 162
Joined: Sep 2020

Abracadabra hocus-pocus bibbidi-bobbidi-boo alakazam presto chango double, double toil and trouble fire burn and cauldron bubble cool it with a baboon's blood then the charm is firm and good

🎩, Alicia

MAbound
Posts: 1153
Joined: Jun 2016

Well, this fraud sure is good for a laugh now, isn't she? Some of your responses to her are a hoot!

alicia2020
Posts: 162
Joined: Sep 2020

i had to memorize those lines from Shakespeare in my 10th grade English class! Which, now that I think about it, was 50 years ago! They've always come in handy when I I want a speaker to understand that I think what they're saying is ridiculous and/or far-fetched! (Around here , talkin' in that manner is more commonly referred to by using a two-word phrase, but I can't write that here!)

Hope y'all can have a good day!

😎, Alicia

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