Lymph gland removal only option? Lymphedema?

sunnybnny · Regular Joined: 11 Aug 2006 Posts: 12

Hi my name is Valerie and I'm 51. I was diagnosed 2 weeks ago with Grade 1 Endometrial Adenocarcinoma, Endometrioid Type. This post will be a long read and my question is in the last paragraph. To give some background and history here:

I've had heavy, painful periods and cramps for my whole life. The only good part was their faithful appearance every 28-days like clockwork so I could schedule my life around that week of misery. About two years ago they became very erratic and suddenly I never knew when I would have a period! I would get one every couple of months, or sometimes two in one month... we thought it was just the start of menopause. In November I had a period after a 4 month absence of any, and it was very different from my normal periods. The blood was brown and gooey and it only lasted 3 days, plus there was very little cramping. It was almost like my very first period when I was 13. Yahoo, I thought! My periods are ending and no more horrible cramps! In December I had another period that was more normal with return of cramping. After it was over I was left with a profuse, watery, grayish, SMELLY discharge that was constant. I had to wear a pad every day because it was so heavy.

I made an appointment with my gynecologist because I knew this wasn't normal and got in at the end of January. I had a pap that came out clear, an ultrasound and another diagnostic (I can't think of the name) in February that found a rather large polyp. I guess polyps are not "normally" cancerous. My gynecologist suggested a DNC which I kept putting off. In June HEAVY bleeding started with gigantic clots that lasted about 3 weeks. That was it, I scheduled the DNC and we also planned an ablation if the tissue scrapings looked healthy with no cancerous process. I woke up from the procedure, the doctor said the ablation was done because the tissue looked great, and off I went. 4 days later I got a call from my very shocked doctor that said the lab report came back with the diagnosis of grade 1 endometrial adenocarcinoma.

I saw a gynecology oncologist 3 days ago and for treatment he recommends total hysterectomy removing uterus, ovaries, tubes and lymph nodes. My regular gynecologist and my surgeon both say that the cure rate is high up in the 90 percentle at this early stage, so I'm feeling pretty fortunate to have found it this early, am staying positive about the whole mess, and I'm really hoping that things don't change once the surgeon gets in there for a look.

I'm wondering, however, why both doctors failed to mention lymphedema being a possible outcome of having my lymph nodes removed... ? In fact, I'm the one that had to bring it up! I would never have known about lymphedema if my mother hadn't ended up with it after a breast cancer mastectomy and lymph node removal under her left arm. Both of her legs are huge, misshapen, very uncomfortable and painful for her since treatment is not really helping. I did research after her diagnosis and found that it's very common for patients to end up with lymphedema when lymph nodes are removed. There is no cure and it can be dangerous and life threatening if left untreated. I've always had trouble with swollen ankles and puffy fingers and I'm thinking it might be an indicator that I'll end up with it as well. The price I'll have to pay, I suppose, to cure the cancer.

But to get to the real point of my post... do all the pelvic lymph glands have to be removed at this early stage diagnosis? Isn't there a more conservative approach instead of automatic removal? My surgeon's thought is to go in with guns blazing and get everything out out out! I appreciate his aggressive approach for the most part except for the lymph nodes. What if the surgeon removes all my lymph nodes, they are found to be clear and it is confirmed that there is no cancer outside the lining of my uterus? In the process I will have lost the lymph glands I need for fighting infection and moving lymph fluid through my body when I didn't need to. I am horrified at that thought because of what my mother is going through. Should I seek another surgeon who will be more conservative, or is that just how it is handled? Is that the only alternative to staging and treating this cancer? I would appreciate any feedback, comments or related experience. Thank you!

sunnybnny · Regular Joined: 11 Aug 2006 Posts: 12

Since I last posted I've had a CT scan that hinted at no lymph node involvement or spread of the cancer outside my uterus, and finally had my hysterectomy last week. This has been a very painful week, but what a relief to get the cancer out of my body! My surgeon doesn't like flying blind and wasn't happy with the decision to leave the lymph nodes, but I am "the captain of my ship" as he puts it, and wouldn't do anything I didn't want him to do. We finally came to the agreement two hours before surgery that he could remove ONLY the nodes that looked swollen and "obviously OBVIOUSLY OBVIOUSLY compromised". The good news is that they all looked healthy and I got to keep them all! YAAAAAAY! Now we're waiting for the patholody report to see how far the cancer went into the uterine wall. That will determine if I need any further treatment, like radiation. My first reaction to radiation is negative.... just like the thought of taking my lymph nodes... so we'll see how that goes. I'll be going in for regular 3 month testing to see if there is any sign of the cancer reappearing. I'm SO happy that lymphodema will not be part of my future as a cancer patient. I feel incredibly lucky and thankful! I'll post again when I get more news.

sunnybnny · Regular Joined: 11 Aug 2006 Posts: 12

I'm doing great after surgery! I just had my 2 week post-op follow-up appointment and got GREAT news. The pathology report on my uterus showed minimal wall invasion and the pelvic washings showed no sign of malignancy. Wahooo! That means no radiation or chemo for me as long as I have no recurrence. I feel like I just dodged the biggest bullet of my life! I have to go back in another 2 weeks for a checkup, then at 3-month intervals which will lead to longer intervals later until I pass the 5-year mark with no sign of cancer. I'm a little in shock that things went as well as they did, even though I always kept the thought in my mind that I WOULD BEAT THIS. I've read that frame of mind is an important component in the fight against cancer.

LISTEN TO YOUR BODY and make time for testing if you feel something is out of kilter. Early testing can make the difference!!!! In my research on cancer I've learned how important it is to keep your immune system strong! Build yourself up! Keep your liver healthy, it is critical to your body's processes. Detox if you can. Remove chemical pollutants from your life. Be careful of the chemicals you are putting on it AND in it. Eat whole foods. Try to eliminate processed and preserved foods.

Stress kills... make every effort to lighten your life and load. Take time to love and live your life to the fullest... it is SO important.

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