my story

PeachTree · Posted: Sun Jul 12, 2009 8:43 am Post subject: my story

Just introduced myself in the "introduce yourself" forum but wanted to give my story again in "my" forum..

I got sick memorial day weekend. I had woke up about 2am sooo swollen with fluid that my arms felt like they were on fire. When I got up out of bed, it felt like I was being stabbed in my left leg (which is the leg that is always swollen on any given day.. but never the right leg)... when I tried to walk, my feet would burn. I felt soo weak and tired and still swollen even after taking a 80mg lasix with no relief. Mark and I thought I was having a stroke and he finally talked me into going to see his doctor in Logan. We went there and he took all kinds of blood work (of course).. took blood pressure and all that.. measured my legs in the calf area and found that my left let was 1 1/2 inch bigger than the right leg. Asking me how long this had been like this, I told him for the last 12 years. (I've been that way with my left leg since I had Rock.. a botched C-section).. so he wanted to send me for a pelvic, internal ultrasound to check the incision b/c it had stayed busted opened for 2yrs.. and 2 types of dopplar of my legs as well to look for any type of restrictions/blockages.. We get called in about 4 days later to come in (thinking we were going to be told about a blockage) was told that he wasn't concerned with my legs at the moment, but that I had an enlarged lympnode on my left side groin and I had some cysts on both of my ovaries and my unterus was enlarged. At first they were thinking Lymphoma..He asked me when was the last time I had seen a gynocologist, which is was in October. I had went for annual exam and had been complaining of my periods becoming irregular and more heavy and thinking I was starting menopause b/c they had became that irregular. That pap had came back normal, but he said b/c of the cysts and enlarged uterus, he wanted me to see a gyno now and he was making an referral. I went in on the 10th of june.. he brought us both in his main office and talked with us the findings of the ultrasound and went over my history of my periods.. I had told him about going this past Oct to my regular gyno and discussing that my periods had gotten worse in the last 4 months with going 21 days to 36 days.. 24 days.. and such to 3 days of light pink bleeding to 7-8 days of horrible dark clotty blood running down my legs.. so he wanted to redo a pap and to set me up with a uterine biopsy ( called a hysteroscopy) to look inside of my utereus to check for any masses or polyps because he said ultrasounds just show the outside not the inside as to why my uterus was enlarged.went on the 18th for that.. he took 5 biopsy and scheduled me for a pelvic and abdominal CT scan on the 24th and then a appt after that to get results of biopsy. Had the CT done (had to drink 2 big bottles of barrium..wasn't too bad.. flavored orange creme.. ) at 12 and then to gyno at 2.. was expecting him to say something along the lines of endometriosis or menopause.. NOPE.. he said 2 things going on.. 1.. i have endometrial hyperplasia with stage I unterine/endometrial cancer.. 2. I have some precancer cells on my cervix as well and scheduled me yesterday for a stage II pap with a cervical biopsy. I was sent to oncologist in Charleston at Thomas Memorial Cancer Center on the 29th of June for the enlarged lympnode and the unterine. I go back for another unterine biopsy in October.

I have 3 wonderful doctors and all are in agreement of our course of treatment. I'm taking 2 pills a day of hormones (this is first step of treatment with this stage) for 4 months. They are hoping that this hormone will cause the thickening of my uterus lining where the tubular cells are will shed. Now what that is:

In my uterus, where it's enlarged, it causes my unterine lining to thicken like normal when you have a period, mine over thickens.. and in that thick layer, it's covered (not normal) with these tubular shoots that contain the cancer that bleeds within this shoots. he said it's like mini volcanoes.. it's rumbling and smoking.. you know it's there.. you know it's gonna blow.. you just don't know when..

So right now, nooo surgery.. my oncologist did say that with the 2 types of cells that I have (uterine and cervical) that more than likely I'll be facing surgery within in the year if not sooner so that I needed to go ahead grasp that in my mind. If I do have to do the surgery if the hormones don't work, then I'll have to take some treatments. and that's where we are now

rmaureen · Moderator Joined: 06 Oct 2005 Posts: 337

Hi, and welcome to the forum. As always, we wish it was under better circumstances you find yourself here.

PeachTree, what are they planning to do about the cancer? Have they discussed radiation and chemotherapy at all? Hormones are not going to address the existing cancer cells according to my understanding, although limited it may be. I am not talking about the effects of hormones on the uterine lining, but what is the course of treatment concerning the existence of cancer in your body? I may be missing something here (and that is often the case) but it seems to me if they determine Stage I endometrial cancer, they would do more to address with hormones. Anyone out there with similar experiences or knowledge, please post your thoughts!

Rhonda
_________________
Diagnosed Sept. 2005
Stage III-C Endometrial Adenocarcinoma
Grade 2
My Story:
http://fierytrial.wordpress.com/2009/12/09/my-diagnosis

Jean222 · Senior User Joined: 14 Dec 2008 Posts: 262

Peach Tree,

The most usual treatment for uterine cancer, even stage 1, is surgery to remove the uterus, tubes etc. as well as localized lymph nodes. Stage one means that it's contained to the uterus, you're very lucky as your chance of a total cure is excellent.

If you are on progestin, did you tell them that you do not want a hysterectomy?

As I understand it, the only time they do not opt for surgery, is if a woman does not want a hysterectomy.

FWIW, if I were you, I'd be very glad that it's been found early, then have the hysterectomy. That will stop the cancer from spreading to other organs.

They've already told you that surgery is coming, so IMO, the sooner the better for your overall health.

Best wishes to you.

Jean

PeachTree · Posted: Sun Jul 12, 2009 10:16 pm Post subject: RE: treatment

I'm sorry that I left some things out.. Yes, it's in the very early stage and they want as do I want to try the provera to encourage the lining of my uterus to "shed" that layer with the cancer cell "shoots" as I call them. I really don't want to be cut on unless I have no other choice as I've been cut on already 5 times for other reasons: 2 c-sections, double bilateral breast lumpectomy and a D/C due to a miscarriage. but of course, if they tell me that in October when I go back for the repeat of the uternine biop, that we need a hysterectomy, then I'll do it.

both doctors wants me to try the hormone for 4 months and then repeat the uterine biop to see if the lining has thinned, the cells gone and uterus shrunk... I went on the 9th for the cervical biop, I've been taking the hormones since the 25th of June.. I find out this coming week how the cervical biop comes back.. but my appt is already made for oct 8 for the repeat uterine biop.. if things go as planned..

Jean222 · Senior User Joined: 14 Dec 2008 Posts: 262

Please clarify for me, Peach Tree.

You've already had breast cancer, twice?

You have precancerous cells on your cervix?

You do not want a hysterectomy even though they've proven there are cancer cells in your uterus??

And you're still swollen and fatigued and have an enlarged lymph node in your groin?

I'm trying to sort out the 'essentials' for anyone else who might have some further input for you.

As previously stated, the docs have told you, you will need surgery.

Cancer is not something to mess with IMO, it can/does spread and become inoperable, sometimes very quickly.

A hysterectomy is a major op but it's not too bad overall.

Some can even be done via the vagina, without cutting into you but you need a very experienced doc for that type. And it probably shouldn't involve cancer, as they need to 'see' the operative field.

Best wishes to you.

Jean

PeachTree · Posted: Mon Jul 13, 2009 8:25 am Post subject: Re: my story

[quote="Jean222"]Please clarify for me, Peach Tree.

You've already had breast cancer, twice?

You have precancerous cells on your cervix?

You do not want a hysterectomy even though they've proven there are cancer cells in your uterus??

And you're still swollen and fatigued and have an enlarged lymph node in your groin?

I'm trying to sort out the 'essentials' for anyone else who might have some further input for you.

As previously stated, the docs have told you, you will need surgery.

Cancer is not something to mess with IMO, it can/does spread and become inoperable, sometimes very quickly.

A hysterectomy is a major op but it's not too bad overall.

Some can even be done via the vagina, without cutting into you but you need a very experienced doc for that type. And it probably shouldn't involve cancer, as they need to 'see' the operative field.

Best wishes to you.

Jean[/quote]

I've not had breast cancer.. I have large fibrocystic in each breast and had to have the cysts removed. in both breast.. I do have precancer cells on my cervix, I get the results of the cervical biop this coming thursday.
It's not that I don't want a hysterectomy.. my doctor and I don't want surgery if we can avoid it. these cells in my uterus are in the beginning stage and they are hoping that the hormones will cause the uterus to shed those within the lining..as far as being swollen, the dopplar revealed that I have bilateral insuffiecient veneos reflux ...and since starting the hormones, I feel really good.. it's like I have energy and don't feel "crappy". they lympnode according to the CT has went down probably from an infection but they will keep a close eye on it since i have no other lympnodes swollen and will do a repeat CT in 3 months. I never could feel the darn thing anyway so that was just a mystery as well.

Jean222 · Senior User Joined: 14 Dec 2008 Posts: 262

Okay, fibrocystic breasts are miserable, I have them too.

I thought you had breast cancer due to your "double bilateral breast lumpectomy" statement.

Lumpectomy is the phrase for removing a cancerous mass.

I've not heard it used for cysts, learn something new every day.

When I've had large cysts, they just drain them with a needle and send the fluid off to pathology, fluid from cysts can also be cancerous.

Hormone therapy can sometimes make the uterine lining slough off, fall away but I've never heard of it sloughing off cancer cells.
Wish it were that easy, eh?

I'd be rushing to get the cancer removed, so that it wouldn't spread but that's me.

I wish you the very best with this treatment, please keep us updated.

Jean

rmaureen · Moderator Joined: 06 Oct 2005 Posts: 337

My thinking is on the line with Jean, I have not heard of hormone therapy removing cancer cells. Maybe you should get a 2nd opinion. These cancer cells are already in existence in your body, and yes, such surgery stinks, but on a matter so serious, maybe you should consider your situation being assessed by another doctor.

Rhonda
_________________
Diagnosed Sept. 2005
Stage III-C Endometrial Adenocarcinoma
Grade 2
My Story:
http://fierytrial.wordpress.com/2009/12/09/my-diagnosis

melissa72 · New User Joined: 16 Jul 2009 Posts: 1

It's quite true that onc/gyn are prescribing progestins (provera, megace) in hopes of reversing the cancer cells (albeit in most cases temporarily). In my case it's to [hopefully] downgrade my level 1 to hyperplasia so that I have the potential to carry a child as I am one of the uncommon women (5% of all cases) in child bearing years to have this type of cancer. (PCOS is the root) If hyperplasia is reached, IVF cycles would be administered, etc... and my body would then make enough progesterone on it's own as soon as it realized I was preggo.

As I understand it, this type of cancer is hormone related, primarily dominating estrogen with no progesterone to maintain the balance. Our uterine grass is growing with no lawn mower to keep it tidy, as it were. The theory is to provide an extremely high dosage of progestin to counter balance the effects of the estrogen. From my reading it is successful in 25-45% of all women with lower grade in my age group (25-40).

It sounds sexy, but it IS less than 1/2 of all cases that "take" to this type of treatment. What it has allowed me was to have a little more hope, but to make peace with the fact that it was more than likely that I would have to have a child through other methods. I have read so often where people were diagnosed with end cancer and within a week/month have a hysterectomy. I am extremely lucky to have had the care and monitoring to allow me to try this route prior to "calling it", which is coming soon!

My onc has also said, "You also have to be willing to take the risk of it reaching a higher grade, which is unlikely given your treatment, but it could still happen". My fellow friends with cancer scream, "GET IT OUT GET IT OUT" and I completely understand their anger at me for allowing this treatment to prolong, given the opportunity at getting rid of their cancer with a little surgery with a 95% rate of it being eradicated, they wouldn't hesitate. Peachtree, I hope that your monitoring is going to be not longer than every 3 months. Mine was: medicine for 3 months, then MRI & biopsy or MRI & D&C. rinse, repeat.

Make sure you understand that this type of treatment doesn't take to everyone (and as I am learning, PCOS types aren't the best of candidates due to insulin resistance & excess weight (and therefore excess estrogen floating around in the fat). The medication doesn't help either because progestins are also given to anorexics and advanced cancer patients who are experiencing "wasting" (not eating/sudden weight loss).... which means... it stimulates your eating and makes it extremely hard to lose weight, which is what you have to do to make the cancer reversal work.... talk about irony! Shocked

It's funny that you talked about shedding the lining which hopefully will shed the cancer cells.... I had the same conversation with my onc/gyn because for the last 6 months, she's been doing biopsies, leaving my endometrium lining in tact (the D&C would at least get rid of the lining). I said, 'I know it HAS to be psycological, but how can I get rid of the cancer cells if they are stuck in the lining!' She humored me and switched medication to provera, which I would take for 10 days then not for 20 days and experience a period in there someplace. We're doing that therapy for 3 months and if no change, we're calling it.

Good Luck! Glad to have found this board! Wink

PeachTree · Posted: Mon Jul 20, 2009 9:49 pm Post subject: Re: my story

Thanks for the added info and support!! I was really beginning to wonder if I was just crazy and misunderstanding the doctors and was beginning to worry that maybe I was being stupid. I'm 38yrs old and I'm really in no hurry to have my utereus removed even though I am done having children. I have 3 beautiful kids- ages 25 (she's really my st/daughter, but I've raised her since she was 5) and two boys ages 12 & 8. Our daughter made us grandparents twice now with a 3yr old and a 3month old girls. (my husband is 12yrs older than me).. I know it's a risk but I really think that for me, the hormones is a less risk than surgery.. I completelly understand that it might be termporary or it might not work at all.. but I've always been a fighter and one that will do the opposite of what I'm told I cannot do.. example: having children.. after losing our 2nd baby to miscarriage, I was told no hope.. then I had our son.. and due to complications, was told to not get pregnant again.. took me 4yrs, but I did and even though I was told that either I or the baby or maybe both wouldn't survive, I did it! Now.. what if I had listened?? I would not have my boys.. My parents says that I'm just "hard headed"..

I got the results of the cervical biop back and the results showed that I have "chronic inflammmation of the cervix" the gyn. said was more than likely from the enlarged uterus but that it was clear. So he said unless I have any problems, he would see me in October (the 8th) for the uterine biop to see how the hormones have done. I'm just now having my first period while taking the provera.. (I take 5mg every day.. no breaks in between..everday for 4 months) and I haven't "cramped" and my period seems to be not heavy, but regular "color" of blood (not like dark black/red like it's been with heavy clots) and I don't feel as "full" as I was with the pressure like being ripped apart while on my period like I did before. So, I know it's stupid to say, maybe it's working.. but I catch myself going to the bathroom and looking and thinking.."is there any cells in that???"..lol

rmaureen · Moderator Joined: 06 Oct 2005 Posts: 337

*I just wanted to post this information, as it follows the course of this thread as it discusses hormone therapy and other treatment options. I also took Provera a year before I found out my cancer diagnosis, it was prescribed by my gynecologist who believed fibroids was causing my bleeding. It is so important is to have a doctor monitoring your condition closely. Surgery, radiation, hormone therapy, chemotherapy are briefly discussed below:

This is taken directly from the Mayo Clinic website:
http://www.mayoclinic.com/health/endometrial-cancer/DS00306/DSECTION=treatments%2Dand%2Ddrugs

"Treatments and drugs
By Mayo Clinic staff

Surgery is the most common treatment for endometrial cancer. Most doctors recommend either the surgical removal of the uterus alone (hysterectomy) or, more likely, the surgical removal of the uterus, fallopian tubes and ovaries (hysterectomy with bilateral salpingo-oophorectomy). Lymph nodes in the area should also be removed during surgery along with other tissue samples.

A hysterectomy is a major operation, and because you can't get pregnant after your uterus has been removed, it can be a difficult decision for some women. However, surgery is usually the only way to eliminate the cancer or the need for further treatment.

If you have an aggressive form of endometrial cancer or the cancer has spread to other parts of your body, you may need additional treatments. These may include:

* Radiation. If your doctor believes you're at high risk of cancer recurrence, he or she may suggest that you have radiation therapy after a hysterectomy. Your doctor may also recommend radiation therapy if the cancerous tumor is fast growing, invades deeply into the muscle of the uterus or involves blood vessels. Radiation therapy involves the use of high-dose X-rays to kill cancer cells. When done from outside the body, it's called external beam radiation therapy. Brachytherapy is another form of radiation that involves the internal application of radiation, usually to the inner lining of the uterus. Brachytherapy has fewer side effects than conventional radiation therapy does. However, brachytherapy treats only a small area of the body.

*Hormone therapy. If the cancer has spread to other parts of your body, synthetic progestin, a form of the hormone progesterone, may stop it from growing. The progestin used in treating endometrial cancer is administered in higher doses than is used in hormone replacement therapy for menopausal women. Other medications may be used as well. Treatment with progestin may be an option for women with early endometrial cancer who want to have children and, therefore, don't want to have a hysterectomy. However, this approach is not without the risk that the cancer will return. Carefully discuss this treatment with an expert in this field.

Another hormone therapy option is gonadotropin-releasing hormone agonists. These drugs can lower estrogen levels in premenopausal women.

* Chemotherapy. Chemotherapy is the use of drugs to kill cancer cells. Often, chemotherapy drugs are used in combination to increase their efficacy. Generally, women with stage III or stage IV endometrial cancer will be offered chemotherapy as part of their treatment regimen. You may receive chemotherapy drugs by pill (orally) or through your veins (intravenously). These drugs enter your bloodstream and then travel through your body, killing cancer cells outside the uterus.

Each type of treatment for endometrial cancer can have side effects. Ask your doctor what side effects you can expect and what can be done to manage them.

If you have late-stage or recurrent endometrial cancer, you may benefit from participating in clinical trials that provide new experimental treatment options. For more information on clinical trials, contact the National Cancer Institute at 800-4-CANCER (800-422-6237) or visit its Web site.

After treatment for endometrial cancer, your doctor will likely recommend regular follow-up examinations to determine whether the cancer has returned. Checkups may include a physical exam, a pelvic exam, a Pap test, a chest X-ray and laboratory tests."
_________________
Diagnosed Sept. 2005
Stage III-C Endometrial Adenocarcinoma
Grade 2
My Story:
http://fierytrial.wordpress.com/2009/12/09/my-diagnosis

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