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Confused and don't know why Confused and don't know why

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  #1  
Unread 07-11-2006, 11:19 PM
Confused and don't know why

I had my TAH on January 18 of this year. I had a 40cm tumor removed, ovarian, and pathology came back stage 1a. I was ecstatic, as I still am, and my wonderful doctor said I was blessed, and I agree. I have not had to have any followup treatments, just go in to see him every three months for pap and ca125, which were both normal (ca125 was only 3 this time, down from 6 last time in March). It was an endometroid adenocarcinoma, which is a phrase that seems to go over and over in my mind now sometimes.
This is why I am coming here tonight to post:
Today my husband talked to an insurance salesperson. We are trying to get new insurance. I have none. We are paying for all these medical bills ourselves, which isn't the main issue here, just that we accidentally cancelled our insurance last fall right before this happened for some weird reason. Anyway, in his conversation with this woman, she referred to my cancer as "pre-cancer" since it "was only stage 1a." For some reason, this set me off. I became so angry at my husband, especially when he asked "Didn't you just have endometriosis?" This man was sitting right there when my oncologist gave me my initial diagnosis after my TAH. He has not mentioned my surgery at all in months, nor asked how I am doing, at all. I have become very active in the last few months, making a point to return to my former activities and then some. I don't want someone to constantly pat me on the hand and ask me how I am, just to realize with me that this was a close call and let's rejoice and get on with our lives. But to me, it seems that he has just shoved this all into a closet or something, or is putting his head in the sand about this.
Another reason I got so upset is that my mother had cervical dysplasia, but told everyone that she had cervical cancer. I have talked with her doctor and it was not any kind of cancer. Yet she seems to need the attention that telling people that she was a survivor seems to draw. I do not. I don't want anyone to think that I was trying to say I had cancer to get attention, though, when I know truthfully what my doctor said.
It's not that I think he thinks that I am just saying I had cancer, though. I really don't know for sure why he decided that this was pre-cancer and would believe an insurance person over me. He tried to argue me down that it was pre-cancer instead of cancer, and this has just really upset me for some strange reason unknown to me even.
I believe that if your doctor tells you that you have even on cell of cancer, you have had cancer. And if it is treated and you are told you are in remission, there is reason to rejoice. But we still have to be told to be on guard. Otherwise, why would we be going every 3 months for the kind of doctor visit we usually dreaded when we only had to go once a year?
I don't know. Somebody talk to me here, and tell me what I am missing here. I'm not really trying to make a mountain out of a molehill, but I guess I just had to let off some steam about something that I am not even certain of why it bothered me.
Thanks for listening.
Trish
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  #2  
Unread 07-12-2006, 06:24 AM
Confused and don't know why

Hi Trish - this is a safe place to let off some steam. We may not all have the same experiences but I think most of us can understand the cancer-related experiences of others.

When I was getting ready to go in for the hysterectomy, my SIL said that she totally understood my situation because she had experienced the same thing. Well, she hadn't - she did not have cancer but did have a large cyst. I was confused that she was relating a cancer scare to the real scare of having cancer. But - for those who come close to having cancer, perhaps the shock/despair/fear is similar to what we experience, so those people really can relate to our experience. For the amount of time they are not sure if they have cancer or not, the "what if" thoughts would be similar to the thoughts we have after finding out we do have cancer, don't you think? Just a thought.

About your husband. My husband has said repeatedly that he needed support as much as I did, but the focus was understandably on me. Luckily, my husband comes from a very large family, so he did receive support, but I can tell from his comments that he suffered quite a bit -- and probably still does -- thinking that he could lose me, you know. You might want to question your husband about the thoughts he had about possibly losing you...and what the whole experience felt like to him. In addition, my husband doesn't talk about the experience but listens if I want to talk about it. I think most men are like that - they compartmentalize things - push them in a drawer. He might be so relieved you are okay now that he's pushed shut that drawer with a big sigh of relief and just wants to move on. When you ask him how he feels about this whole experience, what does he say?

You take care, Trish. I'm glad your diagnosis was 1a. Take care,
  #3  
Unread 07-12-2006, 06:27 AM
Confused and don't know why

Trish -

Not a conversation to have in front of an insurance salesperson!

Many people (including I guess your DH) try to minimize these things - it helps them cope, although it can, for you, make you feel your experience is not being validated.

On the other hand - It is important to be absolutely sure of your diagnosis (many women here keep a copy of their initial surgical report - which should include the surgical staging - as well as the pathologists report).

I wouldn't have that discussion with an insurance sales person. They will probably want to review your recent medical records before offering you insurance. You may find that your cancer care is excluded or subject to a waiting period. This may also be why your DH was trying to minimize it.
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  #4  
Unread 07-12-2006, 06:55 AM
Confused and don't know why

Hi Trish,
I feel ya! I have had the same type of thing happen, but not when it comes to insurance. Something that DorrieL said is worth asking about though... It can be very hard and very expensive to get insurance if you have had cancer. So your hubby (and even the insurance lady) may have been trying to better your chances of getting insurance, and at a decent rate, by downplaying your cancer. Other than this situation, its not acceptable to have to convince anyone of your cancer reality. Even stage 1 cancer is invasive, and carries hard treatments, follow-up and concerns for the rest of your life. Jsut so you know that someone else out there understands that.
My best wishes to you...
  #5  
Unread 07-12-2006, 08:09 AM
Confused and don't know why

s Trish

I guess we all process news in different ways.
I just wanted to say CONGRATS on that stage Ia ovarian cancer.
You are one lucky woman!!

oxoxox karenann
  #6  
Unread 07-12-2006, 08:12 AM
Confused and don't know why

Dear Trish,

I'm so glad for you that your cancer was discovered in the early stage, but, as you stated, it is still cancer, and da**ed scary, right?

What a funny (not ha ha) interaction you and your husband had with the insurance salesperson. Why did the insurance woman call it pre-cancer? My suspicion is that she wants to play it down to the company so that you can get coverage. It's sort of like, "oh, I see you had pre-cancer, wink wink." Because, of course, the sad fact is that insurance is difficult to impossible to get once you've had the big C.

As for your husband, he sounds like he's having a true case of pathological denial. He asked you if it was endometriosis? If only! Now, I admit that endometrial sounds like endometriosis, but there is no word CANCER after endometriosis, so that might help him figure out the difference.

Honestly, our spouses do go through the wringer. I once supported my husband through a serious illness, and so I well know the other side. You desperately want your loved one to be well and would step on a landmine for them, but you'd also like to get more support for yourself, too! A couple years ago when a relative had cancer, I sent her husband cards and notes about once a week -- you know, the "hang in there" kind of thing. Being the spouse is no easy task, and some take it even harder than others.

Your husband needs to get his head out of the sand, though. Perhaps he could go along with to your next check up, and you could let the doctor know in advance that you need help with hubbie. Discuss survival and recurrence rates with the doctor, while your husband is listening. BTW, both of these rates are excellent in your case, but your husband still needs to realize the seriousness of what you have been through. Also, I wonder if he might benefit from a couple counseling sessions with a therapist (who knows about cancer issues) or clergyperson.

I've seen a lot of the tendency to minimize the situation. Most of the time when people say "how are you," I look at them and realize that they expect me to say "fine." It really struck me last week when I ran into an EX-sil at Costco, and she asked me how I was and for the latest details of what I'm going through. I could use just a couple more people (aside from my poor beleaguered husband) to listen to me in that way.

Well, of course, there are my hystersisters. This is very helpful emotional support as we navigate our way through the ranks of the insensitive. Keep on coming here and you'll find lots of shoulders to cry on.

Here's to your continuing good health.
  #7  
Unread 07-12-2006, 05:49 PM
Confused and don't know why

Hi there,
I wanted to write to you since I am an insurance lady and sell life insurance and health insurance, as well as auto, home, and financial products. When it comes to health questions on the application, the questions are asked, the answers are given, and I never make any comments as to your health. It would never occur to me to ever down play a diagnosis of cancer (no matter the staging). The policy is underwritten by the insurance company and physician statements and records are usually requested. The policy could come back rated but most likely, until the cancer is five years or more, a policy could be rejected. I am sorry you experienced an insurance agent who down graded your cancer. To me, this was not professional at all. As far as your husband goes, I think it could be that he wants you to be better and is able to cope with thinking of it as pre-cancer. Sometimes a spouse has a hard time with thinking of losing their mate and if it is pre-cancer, then there could be no loss here. My spouse and I have been through the cancer scene and hospice in the last ten years with four immediate family members. When I got my stage 1 endo diagnosis, he went into a phase of denial. Cancer does have many stages and denial and anger are two of those stages. Your husband might be just stuck in the denial stage and will eventually adjust. Let him know you need his support and talk about it as often as YOU need to.
Wish you the best and hopefully you can find a better insurance person out there.
Nancy
PS: I have been a self employed insurance agent for nineteen years and love it. It's all about helping people, not making them feel that they have to defend their cancer diagnosis....
  #8  
Unread 07-13-2006, 07:59 AM
Confused and don't know why

Hi Trish,
I'm sorry the insurance lady chose to discuss/downplay your cancer which was more than inappropriate and perhaps your DH thought there would be a better chance of getting the insurance by agreeing. If your DH always is downplaying/denying your cancer dx then I suspect he indeed may still be in denial. It was almost two years after my dx that my DH blurted out that he was "very scared" when he intially heard my dx and that period was the "worse time" in his life. He would be mostly silent and listen when I would talk about any cancer concerns I had. So I think many if not all spouses often do have problems coping but of course many won't ask for help or even admit it. I am hoping your DH will soon come to accept the illness and thus be more supportive overall to you. If he does not and you remain concerned, perhaps there is a cancer support group you could join together.
s,
peggiesue
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