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Cancer Diagnosis - Need Advice Cancer Diagnosis - Need Advice

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Unread 08-20-2008, 03:36 PM
Cancer Diagnosis - Need Advice

First, sorry for the long post.

In mid-May be doctor's office called to say that my most recent PAP smear had come back with abnormal cells. The nurse did not indicate any concern but told me that they were referring me to a gyno for followup and future screening.

I went to my followup appointment with the new doctor who performed another pelvic exam and took samples from the lining of my uterus. The new doctor indicated some concern about the pallops (removed from my cervix) but indicated that I would have to wait for the biopsy report. At that point she ordered tons of blood tests including CA125.

On July 15th, I was informed that I had uterine cancer - grade 2. My CA125 level was 1. I had no other symptoms. Because I was considered grade 2, I was referred to another doctor (gyno/onco).

On August 1st, I met with the new specialist who performed another pelvic exam and then discussed treatment options. At that point, the new doctor said that I was stage 2 and that my cervix may be involved. He indicated that my original pathology had been done by their expert. I am a bit confused how I went from Grade 2 to Stage 2 without any further tests.

I am now scheduled for a radical hysterectomy on September 2, tubes, ovaries and lymph node dissection. He will also be doing a tummy tuck.

Although I asked about possible followup treatment after the surgery the surgeon said that I will have to wait for the pathology report following the surgery. Should I be getting emotional prepared for radiation treatment?

At this point only a few people know about my diagnosis. In fact, I have not even told my parents. Although my Mom is excellent in a crisis - she is a worry wart and I don't think I can deal with the extra stress while I am waiting for the surgery.
In addition, my parents come from a generation where a cancer diagnosis is a death sentence. I am considering telling them one week before the surgery but not mentioning the cancer at this point. I am really conflicted about what and when to tell them.

Any advice is appreciated.
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Unread 08-20-2008, 04:18 PM
Cancer Diagnosis - Need Advice

Oh Auntie M, I am so sorry to hear you are going through the same thing as I am. I just found this website about 5 days so believe me when I say.....I'm a lot stronger. You will soon be receiving several replies and support. I am having a total abdominal hyster (TAH) in 2 days; Friday 8:00AM. My cancer is in the lining of the uterus only (not attached to the wall of the uterus); but we won't know for sure until it is tested. My PAP came back normal so for that I am grateful. I'm 57, never had a problem, never been married, no children and now this. But you know what, in the old days it was different. I suspect you will do very well. Telling people is very difficult because all I could do was cry; now, I just say hey, I have cancer but they are taking it out. I know nothing about radiation but that I'll deal with later if need be. Know in your mind and heart you are going to be fine. My Mom is pretty controlling and I said her, you must have a positive energy to go on this journey with me. I need strong postive people. Are you with me? And, so far, she's letting me call the shots. Let me know if I can help and I'm sending positive energy to you.
Unread 08-20-2008, 04:48 PM
Thanks For Your Support

Thanks Susan for sharing your story. I will be praying for your on Friday morning and hope that everything goes well with your surgery and recovery.

My Mom is a control freak as well and it will take alot of strength and support from my sister and Dad to keep her under control so that she will respect the decisions I have made about how I want to handle this new challenge in my life.

I know that her actions will be primarily motivated by love but tainted by fear. I also know that I am not at peace about what to say and when to my parents at this point. I hope through prayer that I will know what is the best way to handle the conversation.

Thanks again for your support. See you on the other side.
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Unread 08-20-2008, 05:05 PM
Cancer Diagnosis - Need Advice

I hear your strength in this last email and I know that your prayers will help. I had to smile as you mentioned your Dad and your sister. My Dad moved to the "other side" 12 years ago and I so wish he was here with me now. He was my best friend and he called me his "middle kid" and the "best one he raised". He was funny and optimistic and nothing got in his way; until he was biten by a brown recluse spider. He was all ready in congestive heart failure and simply couldn't fight the infection. The lesson here is...that any of God's creatures can help us and/or hinder us, it is simply the way it is. So any illness we get, we simply do the best we can and keep moving. Okay, enough with my speeches, I have to talk to Dad tonight so I'll see you after my trip to the castle!!! Keep smiling!!!
Unread 08-20-2008, 05:08 PM
Cancer Diagnosis - Need Advice

Auntie M, right now you are reeling. If you do tell your mom, let her know that times have changed, and many women survive for years and years and years. In 1991, my aunt died of ovarian cancer after only 2 years, with one recurrence. She was hospitalized for her chemo. Today, less than 20 years later, chemo is done on an outpatient basis, we don't get as sick with it, and I've already surpassed my aunt in survival with no recurrence (and I had two other cancers to contend with). You will find many woman here who have survived a very long time, and many who are on their 2nd or 3rd recurrence.

Your oncologist is wary about prescribing further treatment yet because of the expected grade and stage. Radiation is usually the prescribed follow-up, and is a sure thing for Stage 3 and beyond. For Stage 1, the operation is all the treatment needed usually.

Stage II, there is a choice to be made sometimes, depending on what the pathology report says. Many times, the doctor will recommend a "wait and see" since the likelihood of the cancer coming back is slim. This is also because you can have radiation only once (by once, I mean one round of treatment like 28 external treatments with 4 internal). Since they can only do it once, they are careful when they recommend it for Stage II, particularly if it's an early Stage II A.

What most of us have learned is that the only way you can get through this is to worry only about what is up next on the roster. Right now, just worry about your surgery and the pre-op. Once you are out of surgery, then worry about the rest of it. I know this is hard -- but you can't worry about all the "what if's" -- you can only worry about what is up next. It does help.

Come here any time...there's lots of us who will help.
Unread 08-20-2008, 05:11 PM
Cancer Diagnosis - Need Advice

I felt the same way about telling people - I didn't want everyone to think "cancer" everytime they saw me. So, I only told the close people who would be helping out after the surgery with childcare, food, dog walks. All anyone else needs to know is that you are having a hysterectomy and there are lots of very personal reasons for that.

I know I can't make you stop worrying, but I went back for my two week check today and I am free of cancer because I had the same procedure you are having. So, try to stay calm: I got myself a tranquilizer for the pre-op wait as I was up all night on the web if I didn't. MY cancer was also grade 2, but the real information comes after the hysterectomy when the pathology report comes back. That is when they can be sure exactly what it is and where it is. They call it staging.

I worried about all the future possibilities too, but the best advice and council I got was right here on this website. The information on the general web searches was very scary. Here at Hystersisters you can read about women who have had all the radiation and etc. but who are still upbeat and living their lives-not letting cancer live their lives.

Hopefully you will have a good result from the staging and you will soon be cancer free. That is the result for most women with this level of uterine cancer. The waiting can be the worst part, so get involved here and we will all be cheering you along every step of the way!
Unread 08-20-2008, 05:41 PM
Cancer Diagnosis - Need Advice

Auntie M, Will To Win has given you excellent advice. The best way to deal with this is to take it one step at a time.

There is every reason to hope that the diagnosis after surgery may be better than it appears right now. My gyn onc told me before my surgery I might have to have internal radiation and after the surgery, it was not needed. My tumors were classified grade 2 before surgery and downgraded to grade 1-2 after the surgery.

As far as your folks go, I was in a similar situation. My folks are 81 and don't even share their own health concerns with their children all of the time. I did tell my folks after I had been to the gyn onc and scheduled my surgery, and I emphasized the strong likelihood that the cancer had been caught early. I told my folks about six weeks after my one and only symptom (one episode of spotting.) - like you, I went through testing without telling them. My dad could not speak the word "cancer" - he kept on referring to "the problem with your gut." And neither he nor my stepmother could bring themselves to visit me in the hospital or at my home while I recovered. My stepmother keeps telling me how glad she is that I am doing so well - she must have been terrified. I know you will find the right way to talk to your parents, especially since you are praying about it.

There are so many hystersisters here with encouragement and support to share. And as someone else has commented, there's usually someone on board any hour. So, visit often!
Unread 08-20-2008, 06:33 PM
Cancer Diagnosis - Need Advice

I am sorry you are going through this. I had a room full of ladies with me when I went for my initial appt. for the gyno/onco. He was intimidated and asked the nurse to stay with him. LOL. I think my sister took it the hardest, during that meeting with the gyno/onco. she had this glazed look, like a deer caught in the head lights. My mother brought "nerve" pills for everyone, LOL. Nobody took them of course. LOL. I am a single mom with 2 kids, I don't know how I would've gotten through this if I didn't have them to go with me to my chemo treatments, the rads I took myself.

I did not have the type of cancer as yours, mine was vaginal. Not a single symptom, I felt perfectly fine, the whole thing that started this was a bad pap result. It was believed I had cervical cancer at first, but as it turned out, my cervix is perfectly healthy. I didn't have the option of surgery due to the risks because of where the tumor was located. I had chemo and rads and internal rads which is just as curative, and actually was less risky than the surgery.

This is a hard journey nobody should ever have to face. I will keep you in my prayers. And I believe you will come out of this ok.
Unread 08-20-2008, 06:51 PM
Cancer Diagnosis - Need Advice

Auntie and phoenix:

A little over a year ago, I was in your shoes. After some abnormally heavy periods, my gyno discovered what we thought was a simple uterine polyp, which was removed during an outpatient procedure and turned out to have early stage cancer cells in it. I had a TAH/BSO along with a panniculectomy (tummy tuck).

The good news, as you've heard from others -- this disease is treatable!

I think I can speak a bit to your question about stages and grades. The stage of the cancer refers to how advanced it is, and the grade refers to how fast it grows -- two different things. From what I understand, they can determine the grade from looking at a sample of the cells (biopsy or smear), but can't know for sure about the stage until after surgery -- they can make good assumptions about how advanced it is based on the biopsy, exams, and scans, but once they do full lab analysis of the organs involved, they can see for sure. During my TAH, they sampled lymph nodes and did a pelvic wash to make sure there were no stray cells floating in the abdomen or spreading through my blood stream.

I can empathize with your worries about who to tell and how. I faced similar concerns about telling family, friends, and co-workers. And I too have a worry-wart mom! Yeah, sometimes managing other people's response to my diagnosis was harder than managing my own response! Sheesh.

I think everyone has a slightly different approach depending on what they're comfortable with. For me, it actually helped me to talk about it -- to speak the word "cancer" without choking on it. It helped me come to terms with everything. I'm sure my approach isn't right for everyone (I'm definitely an extrovert). I'm an executive director and I had to figure out how and what to say to board members and professional colleagues -- often in groups and in a rather public setting. Most times, I'd start out by saying that I had to have surgery -- a hysterectomy, and would be out of the office for a few weeks. At that point, I could tell that most men didn't want to know more (they'd get that "eeeew, TMI" slightly uncomfortable look). However, for those who I was closer to, or more comfortable with, I'd go on to share the details. I was surprised with how supportive and calm most people were. I was also surprised by which ones freaked out. Still -- more than a year later -- a few people will ask in that slightly leading way "so, how ARE you?" -- and express concern (usually not to my face) at every sniffle. But I can understand how they feel. I knew that my mom would be more upset if she found out that I didn't tell her, so I bit the bullet and told my parents right away. She was upset, but we dealt with it.

I'm glad that both of you found this site. Phoenix is right -- it was a godsend to me -- having the collective wisdom and support of so many wonderful ladies who'd been there before. No question is dumb, and believe me, whatever you're feeling, physically or emotionally, someone here will have been there before and can offer advice, or at the least, a gut check and a great shoulder to lean on and ear to listen. These are fabulous women!
Unread 08-20-2008, 07:54 PM
Cancer Diagnosis - Need Advice

It sounds like we have the same parents. My mom was terrified by the "C" word. Everytime she would say it she would whisper. LOL Reminded me of Steel Magnolias. I would tease her about that. I think she took the news harder than I did. She was in the room with me when I got the results so I didn't have any way to lessen it for her.

My only suggestion for telling them is to go to them prepared with information. The moment they start to panic, begin telling them about the treatments. Help focus their attention on the process that will heal you. It might help to also tell them what YOU need from them. If you don't want to answer questions, explain that this is the info you have and lay it out for them. If you want to help them understand more, ask if they have questions. The main goal in this is to set limits with them. Limits YOU are comfy with.

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