Just stopped radiation after 5 treatments

FreakingOutHere

Here is my official dx copied from My Chart-

Uterus, bilateral fallopian tubes and bilateral ovaries, excision: Endometrial endometrioid adenocarcinoma, Grade I of III, with the following additional features:

- Tumor invades greater than 50% of the wall thickness

- 0.8 of 1.0 cm, 80%

- Angiolymphatic invasion identified.

- Tumor invades upper endocervical canal superficial stroma

- Margins of excision negative, closest parametrial at 0.5 cm

- Bilateral fallopian tubes: benign

- Bilateral ovaries: Atrophic with superficial inclusion cysts

But then further down I find this-

TUMOR

Tumor Site: Endometrium

Histologic Type: Endometrioid carcinoma, NOS

Histologic Grade: FIGO grade 1

Two-Tier Grading System: Low grade (encompassing FIGO 1 and 2)

Myometrial Invasion: Present

Depth of Myometrial Invasion: 8 mm

Myometrial Thickness: 10 mm

Percentage of Myometrial Invasion: 80 %

Adenomyosis: Not identified

Uterine Serosa Involvement: Not identified

Lower Uterine Segment Involvement: Present, myoinvasive

Cervical Stromal Involvement: Present

Depth of Cervical Stroma Invasion: 3 mm

Cervical Stroma Thickness: 12 mm

Other Tissue / Organ Involvement: Not applicable

Peritoneal / Ascitic Fluid: Suspicious: Rare atypical small groups suspicious for malignancy

Lymphovascular Invasion (LVI): Present

: Low (less than 3 vessel involvement): deep aspect of tumor

Further down yet, I found this-

PATHOLOGIC STAGE CLASSIFICATION (pTNM, AJCC 8th Edition)

FIGO Stage: II

I have had several conversations with doctor and nurses and I still don't understand what any of this means. I was referred for a biopsy the first week of May (this year), had outpatient surgery on May 25th which as far as I can tell went great. I had almost no pain afterwards and only took a few Tylenol and Ibuprofen, mostly at night so that I could sleep better. Never took any of the Oxy-whatever that they prescribed. The only weird thing was that I kept finding sutures popping up through my skin which my primary care physician said was due to my body rejecting the suture material. The last of that came out yesterday, 8 weeks post-op.

The gyn/onco recommended radiation so I went for a consultation and agreed to have it. They recommended 5 treatments a week for 5 1/2 weeks, for a total of 28 treatments. I had no concerns going in because they gave me the impression that it would not be a big deal and that side effects, if any, would likely be minimal. Well, the first 3 were but after a weekend off I met with the radiology oncologist after Monday's treatment and I had a bunch of questions. First though, they had me meet with a nurse who was unable to answer any of my questions, then the doctor came in and I started asking him questions and he wasn't very responsive. Then someone came and said he was needed elsewhere so that ended that. By the time I got home I was feeling exhausted and nauseous. I also noticed a foul odor coming from my vagina. When I was getting ready to go back for my Tuesday treatment I noticed some bloody discharge and more odor so I asked about that before my treatment and the response was "call your gyno". I left not feeling very good about the radiation. Woke up this morning, nauseous again, and with a lot of pain in my abdomen/pelvic area.

I can deal with pain and discomfort. I am 62yo and I have an adopted 12yo child at home and I would put myself through hell for her, especially if it means living long enough for her to grow up before I keel over and die. But I feel like the doctors really downplayed the risk of side effects and I do not want to wind up with some other cancer as a result of the radiation. The oncologist told me that the rate of recurrence for my type of cancer is 20% and that the radiation would reduce that by 5-10%. I think that is what he said- maybe he said it would reduce it TO 5-10%, not even sure anymore. But nowhere can I find any statistics that state what the odds are of developing some other type of cancer FROM the radiation, which make me really nervous.

Anyway, the upshot is that I called the radiation clinic and cancelled the rest of my appointments. I did not go in today, so I am done and hope that I did not just sign my own death warrant by refusing further treatments.

Forherself

Welcome FreakingOutHere. It is a scary thing to deal with! Maybe we can help. It helps to know other women have gone before and you can learn from them. I did not have radiation, but read your pathology report. You have endometrioid type 1 cancer cells. This type is less likely to spread or result in fatality. I have learned that you can never say never with cancer cells. You are stage II because your tumor grew in to more than 50% of the wall (muscle) of your uterus. That is just how they ( The National Gynecologists Oncologists) decided to determine stage. Lymphovascular invasion means the tumor had blood and or lymph vessels (they are so small its not possible to tell the difference) in it. That usually increases the risk or cells goings somewhere else. Lower uterine segment tumors are more likely to recur from my reading. Maybe you don't have confidence in your doctor. You can request a second opinion. I think if I were you I would do that. There is a patient here who had to stop her treatment. We are all different. There are a few patients on here who had two different types of cancer, but you are worried about a different cancer in your field of radiation. I have read of cases, but a second cancer seems to be unusual so I would make sure you get an answer to that question. Your doctor should be able to answer that. Be persistent and maybe write the question down so you can be specific about your worries. The doctor or nurse should be able to tell you what side effects are possible too. Or give you that information to read. And then I would follow my doctors recommendation. But we are all different.

Sue

NoTimeForCancer

I second the thought of getting a second opinion. There is no reason you are not getting answers to your questions, especially the gyn onc's office.

I had chemo, but I also had both external (which is sounds like you are/were getting) radiation and brachytherapy (internal). Admittedly, radiation freaked me out more than chemo, and while I was told I didn't have to do it, I made the choice to continue. That is always the patients right. I did have side effects at first, which was some diahhrea, but I worked on what I ate and tried to balance it all. After so many treatments (tx) it did cause me extreme fatigue, but it started to get better after tx ended.

Some women here have reported ongoing bladder issues, and I am hoping they chime in as you need all kinds of information to make your decision.

Again, I would seek out a doctor who is willing to answer your questions. You deserve that.

FreakingOutHere

Thank you Sue and NoTime for weighing in.

I am not getting any response from anyone. I have sent messages through MyChart over the past two days and the only response I got was a message back from some generic nurse at the gyno's office- telling me to call and make an appointment. Well, I called yesterday and left a message and then never heard back until this morning when a scheduler from the gyno's office called back- and all she could do is make an appointment for NEXT Monday. I haven't heard back from the surgeon's office.

Sue, your explanation of the cancer is much more straightforward than any I have gotten from any medical professional, so thanks for that.

Everyone is so busy here and it is next to impossible to get through to anyone. I missed one radiation treatment and I am 100% sure that the minute the receptionist hung up with me yesterday she was on the phone filling in all of my other appointment times that I cancelled, so I probably can't get back in now even if I changed my mind about the radiation. The office normally closes at 4pm but they are so backed up that the poor gals are working until 6pm five days a week just to try to accommodate everyone- which I think is amazing of them to do.

I feel absolutely hopeless right now and scared out of my mind.

Forherself

It is a very scary time. That is normal. I waited 5 months from my US to my biopsy. And I was still early stage. It is normal to want to hurry but stepping back is ok too. Medical offices are really busy these days. The doctor doing radiation will not know much about your vaginal discharge so you do need to tell your gyneoncologist. Yes, you probably lost the appointments you had but maybe you need a second opinion. You can ask. your doctor what they would do if they were sitting in your chair. We do have one member, and I can't remember her name, who had to quit radiotherapy too. Maybe she will comment. These decisions are difficult. Make sure you have all the information so you can be confident you made your best decision.

MAbound

Critical Considerations:

1.) Frontline treatment is your best chance for a cure. Once this cancer recurs, it is treatable, but no longer curable.

2). There are 3 grades of endometrial cancer. Grade 1 tumors have more normal cells than cancerous cells. This is a cancer (yours) that has been caught early. Grade 2 tumors have a more even mix of cancerous and normal looking cells in them and would have probably been growing and mutating for a while. Grades 1 and 2 cancers are less aggressive about recuring (with exceptions) than Grade 3 tumors. Grade 3 tumors are more cancer cells than anything else. They are grouped with rarer types of uterine cancer because they are aggressive about recurring.

3). Stage refers to how much the tumor has grown/traveled from it's point of origin. Higher staged cancers have greater spread and need more aggressive treatment than lower staged cancers, but where the tumor started growing in the uterus matters, too. Tumors that start out near the neck of the uterus pose a greater risk for recurrence because of the thinness of the myometrium there and proximity to the cervix.

4.)You were diagnosed with a very treatable cancer, but at stage 2 and so it's been there and growing for awhile. That has resulted in you unfortunately falling into the exception category for needing to have radiation rather than just surgery, especially if you aren't having any chemo. The criteria (and you have all three) for that is:

• Greater than 50% myometrial invasion of the tumor. Yours is at 80%!
• Presence of Lympho-vascular invasion. This is a major concern for recurrence for this particular cancer.
• Origin of the tumor low in the uterus. Increases risk for pelvic recurrence.

I am so sorry that you are having such a hard time with the radiation therapy. I hope that the above helps you to better understand why it was prescribed for you. It doesn't explain every term in that report, but those are the critical points in it as regards your needing radiation. You can talk yourself out of going and take a chance, but I'd advise against that. I had to get some plain talk from dear ones on this site to get past my issues with radiation (stage 3a, grade 3) and I am so glad that I listened to them. At this point your cancer is curable and you don't want to blow that chance. Call your oncologist's office again and be that squeaky wheel or raise some Cain. You are in the midst of treatment, so this does qualify as an emergency. Do what you have to and don't feel guilty about it.

FreakingOutHere

Afternoon update-

I got back on the radiation bandwagon today.

I FINALLY heard back from the gyno's office (a nurse), then the surgeon's office, and then later spoke with the gyno herself- who was adamant that I do really need the radiation but she was bothered by the lack of communication from the radiation oncologist. By the time I spoke with the gyno I had already called the radiology clinic and gotten back on their schedule- phew! But she told me that if I wasn't happy with the clinic in the future she could get my care switched to another clinic in Fargo where she has a friend who she thinks very highly of. I told her I would give the clinic in Brainerd another try since I was already set up there and they were able to get me back on the schedule so quickly, plus I am driving almost an hour to get there and the clinic in Fargo is twice as far away. I don't know if I could do four hours of driving every day- I guess if I had to I would figure it out but better if I don't have to.

The gyno said that she suspects the problem with discharge and odor is a bacterial infection which resulted from radiation. I had already made an appointment to see her next Monday but she offered to call in a prescription for Flagyl today so that I won't have to wait until Monday to start that. She did not have a lot of time because she called in between appointments but she was able to give me a little more info about my diagnosis, which was helpful.

When I got to the clinic the nurse herded me into an office and said the doctor wanted to talk to me before my treatment. He came in and spent about 20 minutes with me explaining things in far more detail and then took the time to answer most of my questions before the nurse came to get me. He then offered to send me links to some articles about cancer treatments- I was supposed to stop and give my email address to the receptionist when I left but she was busy so I decided to do it tomorrow instead. Well, by the time I got home the doctor had gone to the trouble to look through my records to find my email address and the articles were sitting in my email inbox waiting for me.

With a much better understanding of what the process is, and the doctor's assurances that any cancer that might be caused by radiation treatments (he says the risk is low) would be very slow growing not even show up for at least 10-15 years, I feel much, much better about that risk. Still a little shaky on other side effects but it sounds like most of them will be manageable- maybe not pleasant to deal with, but manageable. We will see. Today was treatment #6 of 28 so after tomorrow's treatment I will be 1/4 of the way through.

Thanks again for the support and good info.

FreakingOutHere

MAbound- I just saw your comment after I posted my update- weird that I missed it.

Thank you for the explanation. Everyone who responded to my post explained things so much better than any of the medical professionals have done- crazy! I wish the doctors would do as good a job- but at any rate, I am back in for the duration.

I was really, really unhappy after quitting yesterday. I have been okay with everything since my original dx, even the surgery and the start of radiation- until a couple of days ago. No tears, no real fears, nothing. My doctor was surprised when she asked how I was doing and I told her I was fine- this was a couple of weeks ago. But boy oh boy, did I fall out last night. Cried myself to sleep and then all morning I could not stop crying. I could hardly speak to anyone on the phone because I was crying so much- I'm sure they all think I am a raving nut case. sigh.

I feel so much better now, both emotionally and with the decision to continue the radiation. Fingers crossed that I get through it all okay.

Thanks again.

NoTimeForCancer

No, I don't think anyone is going to think you are a raving nut case. You are someone who has been told they have cancer and you deserve time, respect, and explanations.

Heck, the nurse was so rude to me when I asked about dialators during my brachy therapy I called and complained to the office. The radiologist called me personally and I told him, "she may deal with cancer all day but I assure I do not." I. was. pissed.

It sounds like you are doing better. You may hit some speed bumps along the way, but as you can see, there are plenty of good women here who are happy to help. Glad to hear you decided to return to the treatment.

MoeKay

I would like to add that I was diagnosed with endometrial cancer and, like you, my tumor had invaded approximately 80% of the thickness of my myometrium. In addition, my tumor arose in the lower uterine segment. Finally, I had extensive lymphovascular invasion. My gynecologic oncologist, who was tops in his field and who patiently answered my endless questions, said I needed both internal and external radiation. I had the utmost trust in and respect for him and his knowledge and expertise. I completed the radiation on August 3, 1999, which means that in two weeks, it will be 24 years since I completed treatment.

So, obviously, I'm very happy to hear that you've been successful in getting your questions answered and are back on the radiation bandwagon! Incidentally, the only other cancer I've had since my endometrial cancer treatment was a basal cell carcinoma in my scalp last year, which had absolutely nothing to do with my radiation, but most likely was at least in part due to my daily swimming in a local pond near my childhood home.

MAbound

So glad to hear that you got things resolved and are back in treatment. Here's why your gyn-onc was so adamant about getting you back in treatment:

https://www.cancer.gov/news-events/cancer-currents-blog/2016/missed-radiation-therapy#:~:text=Missed%20Radiation%20Therapy%20Sessions%20Increase%20Risk%20of%20Cancer%20Recurrence,-Subscribe&text=Patients%20who%20miss%20radiation%20therapy,according%20to%20a%20new%20study.

Best of luck getting through the rest of it. I cried my way through the first treatment because I was so scared, so no way were you alone getting freaked out about it. Aside from a few issues with fatigue, a compromised immune system, and some rectal swelling that caused constipation issues (most get some diarrhea) during treatment, it was a lot easier than chemo. Expect your immune system to take a couple of months to get back to normal, so be careful about what/who you're exposed to even after your therapy is done for a few months.

MoeKay, congrats on 24 years! Wow!!

Fridays Child

Wow, MoeKay, 24 years! Phenomenal!

FreakingOutHere, I'm glad you got some answers and have resumed your radiation. I had brachytherapy (internal radiation) after my surgery with no real difficulties. I took probiotics to help minimize side effects.

When I had a recurrence and had external radiation, they gave me a prescription for the GI effects and suggested a bland, low residue diet in addition to the probiotics. As I was having concurrent low dose chemo, I had anti-nausea meds, but only had to use them once. They should be able to give you medications to help control the side effects. If they have a medication for fatigue, I don't know about that one!

Good luck and keep us posted!