My cancer journey So far.

RoseAmberArts

Hello

I actually posted once on here before, back in early 2021. I figured I give an update on my journey and the confusing things I dealt with.

My backstory

I was officially diagnosed with stage one endometriosis cancer stage one after having a long continuous bleeding issue.

The symptoms started July 2020 (I know right?) in January 2021 I was officaly diagnosed.

I was told the conventional way was surgery and removal of my uterus.

Begin only 34 and never having children yet which I still hope to have this was a train wreak.

I'm also what you call a natural person. I won't even take over counter medication unless deemed absolutely necessary.

I believe the body has the ability to fight it just needs the energy, food, and less radical treatments to do so otherwise.

So radical methods where very last ditch effort.

I felt like surgery was a very radical. Especially with definitive risk doing so doesn't mean 100% cure. Nor do I like the idea of chemo radiation etc.

So I chose the hormone treatment route, taking the medication religiously, while adding cancer fighting vitamins and food to help my diet. Which has taken away all my symptoms no bleeding, no pain, no odd smells or discharge.

I was offered other fertility savings options but the problem is I'm on welfare, my insurance doesn't cover that and I have no money to do such.

So to me this was dead end road all or nothing.

Now at the time, this sent me through a spiraling depression, terror and uncertainty because I never in my life had anything major happen to be before.

It made things worse because of covid I been alone most the journey.

I was going through some mental issues, I was in a tough living situation and just received a rejection in a relationship that went out it way to made me think I was less of a woman due to there skewed beliefs to which I realize now where very toxic. This added to the stress of getting the illness because losing my ability to have children made me think I was losing the last thing that made me worth anything. So of you ever see my previous post yeah that as post therapy me.

I'm seeing a therapist now so don't worry. I'm looking at thing with a little more clairty.

Back to the cancer ordeal.

Now here where the confusing journey starts and I'm starting to wonder where I should go.

Now my doctor alway been nice and pleasant to my face but there something underlying that bothers me.

Even before I was diagnosed I was told I should just get a hysterectomy to fix the bleeding problem. That seemed a radical answer to my problems I thought.

I was even forwarned by the doctor who sent to this specialist not to let them push me into a hysterectomy asap because they will.

(They only sent to this specialists because at the time because of Covid and my insurance she was the only one available.)

I constantly feel like I'm gently brushed off I say what attempt I'm making in diet or I said the symptoms have gone away and get the what I come to know as the glass eyes nod. No imput or suggestions or well you can try but...

I read the results too, I research the terms, I have friends who are nurses who help translate the doctoriese of the test, and sometimes I feel she make light or darken to what I'm reading and brushes every comment I make about my treatment.

All together I been doing this for 15 months.

I had three MRI'S (which I hate them I feel like I'm begin microwaved.)

The first to figure out what was going on.

Then the next two to see progress and the last two shown according to the tech report I read. Each time the tumor although still there was smaller the third was smaller than the second time and all three show no signs of spread.

She concern that it still there which I understand, I bring up with her they claim it smaller and there no spread.

I honestly don't expect it to poof gone in a short time I'm a slow healer and that be an act of god and she brushes it off saying well MRI'S aren't the most accurate way of getting testing.

I had several bios, mostly I get told the cells are there I should concider a hysterectomy. I say it if shows spread I will but then the MRI show the opposite and I continue with the treatment.

Back in January 2022 one actually came back with the cells showing change from the cancer to just semi normal.

I was relieved, I recieved this good result, I was getting somewhere and I just had an prosterone IUD inserted in at the same time so that would help.

Meaning is showing slow but steady results I wanted to keep going.

She was relieved at first but then starts to say later "Of course it could mean we just didn't grab the sampled area we needed and it still there."

Well I just had one end of April and she called saying she still seeing cancer cells and because the 15 month time-frame makes her feel uncomfortable she wants me to do a hysterectomy asap.

To be noted this wasn't brought up when I did the bio for this. She said to me if the result good we do the six month in between testing if not we continue with three month.

Maybe she means well but the wordings were very do it or else feeling to me.

I haven't answered her yet.

There many factors that doesn't add up to me, not to mention I barely had the IUD for three months, wasn't that suppose to help? I read it usually takes six months to see full effect.

I'm not sure what to do. This time the people who have stuck by and supported me all feel something not right. I constantly made to feel like I'm inconvenience the doctor because I don’t go with her usual go to treatment. I thought it was in my head but is it?

She makes it sound like I'll get the surgery and everything be all cured, when I know there just as many risk in both routes hers and the one I taken.

NoTimeForCancer

RoseAmber, thank you for reposting all this for us. My goodness you have a lot going on but let me say it is good to hear you have a therapist to talk to. To be so young and need to make such life altering decisions is, no doubt, overwhelming.

There is risk in living, so what is the right path? I wish I had that answer for you. I look back on the things I have done and thought, "if only.." but this is where I am now and I can't change the past.

My suggestion: keep reading, keep pushing, if anything you have seen where we have to be our own advocates.

Hugs dear one. I know the other supporters will be along with some input.

thatblondegirl

Hello, RoseAmber

I’m so sorry you are having such issues and are in such a tenuous situation.

I went back and read your original post to kind of clarify where you are now.

I know you’re young and the idea of being robbed of your chance to become a mother is devastating. I spent 10 years trying to have a baby between ages 25-35 to no avail. They never could find anything wrong, but I never conceived. So, I know something about that huge disappointment.

Aside from that, it appears you have cancer and it needs to be removed. This is a very simplistic and blunt view of your situation, but these are most likely your choices: live without a child or die without a child. Most of us have been diagnosed, had hysterectomies, undergone chemo, and/or radiation. Regardless of stage, we all have done everything we can to try to survive.

I’m so sorry that your situation as to medical care is not ideal, but I hope you can get help that you have confidence in, and find some peace of mind.

I’m hoping for the best for you.

Hugs, A

Forherself

Maybe now that COVID is over you can get a second opinion. You don't trust your doctor. I'm sure the doctor realizes that too. The gynecological oncologist went to university for probably 10 years to learn how to treat your cancer. If you have Endometrioid endometrial cancer stage 1A then I have read hormone treatment is an option. Doctors should not mind you getting a second opinion.

MoeKay

I second Forherself's above suggestion that you get a second opinion from another gynecologic oncologist. Have your nurse friends help you do some research to select someone who is experienced and well-respected in the community. It sounds like there are trust and respect issues on both sides of your doctor-patient relationship, which make it difficult if not impossible to work toward the goal of restoring you to good health. In your post, you stated, "They only sent [me] to this specialist[s] because at the time because of Covid and my insurance she was the only one available." I'm assuming since Covid cases, although currently rising again in many parts of the country, are not anywhere near the level they were at during the height of the pandemic, that you likely have additional options at this point.

Wishing you the best.

thatblondegirl

Aside from being an RN, Forherself knows much more about this than I do! I hope finding a new doctor really helps you.

I guess I’m just a scaredy-cat. Cancer in my body? Get it out now, please! Being a Stage II girl….spread outside my Fallopian tube…and having gone through chemo, I sure wish I’d have known about mine when it was Stage I.

Best, A

Lyn70

RoseAmber,

Hello & Welcome Back!

I was first struck by that image of the woman in your post! I understand the tag 'arts' in your name.

The concept of the body healing itself of cancer by its' immune system is shared by many oncologists, including Nobel Prize winner, James Allison, the pioneer in cancer immunotherapy treatment. You mention hormone therapy but do not mention immunotherapy which can jump start those t cells into defensive action. I believe a second or even third opinion is wise to advise and perhaps reassure you.

I don't know if a hysterectomy will cure you. There are ladies on this site who will attest to that not being their experience. However, I must agree with others who advocate for surgery. I am presented as stage IIIA, 98% myotreal invasion, extensive lymph space vascular invasion, high risk patient. My frozen section at the time of my surgery was initially diagnosed IA. Oh,how many times I wish that was true!

I send you my best thoughts and BIG HUGS!

RoseAmberArts

Thank you all for your words of encouragement and helpful advice.

At this moment in time, I had decided to take a very short mental health break to recollect myself and refocus my care plans.

I plan on seeking a second (or third) opinion maybe even another doctor altogether.

I'm going to work hard in my research on this cancer and its treatment options. Such as the immunotherapy treatment which was never offered as an option to me.

In the meantime, I'm following a strict cancer-fighting diet and supplement plan. I feel I need to give my body a fighting chance.

Again, thank you for your words of encouragement I hope will come back with good updates later on.