The importance of getting a second opinion and my desire to “grow some balls”

second_opinion_shutterstock_153048527A while back I wrote about an experience I had at MSKCC where I had a mouse moment with my GYN — feeling like I was being picked for research purposes. I was due to get my pap smear and to my surprise the GYN stated she was not going to perform one because they were no longer doing yearly pap exams. They are now doing these tests every 2-3 years—and I have learned from friends that my hospital is not the only one doing this.

When did they change the protocol for these pap tests? Here’s one article related to this subject.

Apparently a lot of the cases of cervical cancers are linked to the virus HPV, and because I had tested negative for HPV, my GYN at MSKCC did not feel the need to repeat another pap test even though, technically, I was due for one. But HPV is not the only cause for cervical cancer, so why the drastic change? This change may be related to insurance companies wanting to cut down on costs while risking the lives of some women.

I decided to go back to my regular GYN — outside of MKSCC — and explained the situation. She decided to do the pap test for me because she thought it was important to continue to do them every year, even if insurers are trying to cut down on cost, which could be the real reason the protocol may be changing.

The test happened last month. I received my results this week (right after I had a breast biopsy (skin) to rule out any malignancies – another second opinion). My GYN sat me down in an examination room and explained that they had found abnormal cells in my cervix (I hope this is not related to Tamoxifen). The report stated: Atypical Squamous Cells, cannot exclude high-grade squamous intraepithelial lesion/HSIL (ASC-H). I need a colposcopy to rule out cervical cancer.

I have a lot of worries with this possible new development. I am thinking about facing another cancer, the possibility of losing my uterus — which would be the safest thing to do if it turns out there is cancer, but then I won’t be able to carry a child. How am I going to react during this procedure – will it be too painful? As some of you may already know, GYN-related stuff freaks me out so much. I am scared.

The way I think about it, my original breast cancer hurt my intimacy. This intense gyno stuff hurts because it exposes my intimacy in other ways. It really affects me mentally and emotionally. I also can’t help think about my grandma who died from ovarian cancer – not cervical but there’s still a connection. This is all very overwhelming for me. So overwhelming that I haven’t thought about my breast skin biopsy once. I worry about the possibility of dealing with a new cancer.

With all my worry, though, I have also been thinking that it’s time to grow some balls. I am always scared of exams. I shake and sometimes throw up in the examination room. And I think, seriously, if I want to have a child, I need to find a way to be tough and cope with pain and accept the reality of being a woman.

But also, literally speaking, I really wish I had some balls. More than ever, I wish I were a guy and not a girl. We women go through so many headaches health-wise, starting at a much younger age than men, and it is all scary and tiring.

But regarding these pap tests, what’s going on with the medical system these days? If the protocol for these pap tests has changed there will probably be a rise of cervical cancer cases. That would be unfortunate considering these pap tests have been helping us prevent that.

And, what if this turns out to be a secondary cancer for me? What would have happened to me if I had waited another year or two for the pap test because insurance companies decided to cut down on cost? Doctors want to get paid – they deserve to get paid. But it makes me sad that at the end of the day money is a lot more important than saving the lives of some women. It is so unfortunate that we have to adjust according to what these insurance companies find beneficial for themselves.

Have you had an abnormal pap test? Did you have a colposcopy? Please email me at thesmallc@yahoo.com if you would like to keep your responses private. I would like to hear from you.

 

About thesmallc

I'm Rebeca. I was diagnosed with breast cancer at the age of 32. But there's more to my story: I am an animal lover. I love to cook. I have a wonderful fiancé who doesn't mind walking my rocky path with me. We currently live in New York. ---------------------------------------- “Those who have a 'why' to live, can bear with almost any 'how'.” ― Viktor E. Frankl
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22 Responses to The importance of getting a second opinion and my desire to “grow some balls”

  1. The debate of “over” (test, dx, treat) is not limited to BC/mammography. I had colonoscopy the year before I was dx with BC. At the time I thought it was doctors trying to do useless tests for $$$ But the next year, I was glad because it would come up in a few conversations with nurses about future health care. Kind of like I never got a baseline mammo (because my first one ever resulted in a false negative), but hey, got a baseline colonoscopy if that’s even a thing.

    • thesmallc says:

      I am glad you got that colonoscopy done. I got mine done right after finishing treatments. It was approved because I had colon bleeding during chemo for 2 months otherwise they would have denied it because i was only 33 with no symptoms of colon cancer. These protocols are created to benefit the money-makers.

  2. Carrie says:

    Oh, Rebecca. I can’t believe you have to go through this. What utter bullshit!!!! I’m going to cross my fingers and hope that it’s all nothing. I’ll be thinking of you until you get your results.

    I’m interested in the “grow some balls” aspect of this. We have all been through a major trauma. We can’t undo that. I can’t imagine that we will go into any scan or any exam the same way again. How can we? My last mammogram, they had to keep taking pictures because I was shaking so hard. It is what it is. I find that when we try to suppress our feelings, we make it worse. It sucks. It is always going to suck.

    This, in my opinion, is totally different from all the unpleasantness that comes with having a baby. Nobody likes to be poked, prodded and invaded and yes, that is what happens when you are pregnant but, like with cancer treatment, you do it because you have to. You get through it. Wanting to have a baby is no reason to “grow some balls.” Those people with balls (men) could never do it.

    But I get why you might want to be a man when some of the things that make you identify with being a woman is making you ill. I totally get that.

    Again, I’m thinking of you. I wish this would all go away.

    • thesmallc says:

      Carrie, you are right on! This mess is BS.

      You are right about us not being the same when going in for different tests. Every Dr.’s appt. is a little scary for me because I now go in thinking “what if there is something” unlike other times when I used do these tests because it was part of my “to do” list. I am sorry you experience so much anxiety during the tests too. I hope you’re getting some help with Ativan.

      I agree with you about allowing ourselves to experience all the emotions. That’s what makes us human and it’s natural for us to feel scared when we have been through trauma (and so much drama).

      You just reminded me that everything is temporarily, including pain.

      Thank you for thinking of me.

  3. Erica says:

    Thanks for sharing this with us. You’ve given me good reason to demand a pap, and not wait years like my primary doc suggested even though my grandmother died of ovarian cancer at 52! It is messed up that girls have to endor so much. I remember hearing insurance companies suggesting to not do mammograms if you’re not high risk, just after being diagnosed with triple me give breast cancer with no other related family member ever having breast cancer. Bastards!!!! Insurance companies have no problem taking our money!!!

    • thesmallc says:

      Erica, I am sorry about your grandma. My mom was told that she only needed to have a mammo every other year. I was so upset at her Dr. because we have a strong family history of cancers and we also carry the ATM gene. How can you say that to a patient who is at high risk? Everyone should know that about 85% of breast cancer cases aren’t related to family history and about 6% are related to a gene (according to the American Cancer Society).

      These insurance companies don’t value our lives. Please demand a pap test — it is very important. We are at risk of developing other cancers too.

      Good luck with everything.

  4. scottx5 says:

    As someone with balls I have to say the advantage may not be worth it. The impression I get from medical people is I should be tougher and less in need of caring treatment. At the cancer waiting room I feel like an armadillo among kittens and know I’ll get the rough treatment.

    That said, part of this is separate from gender and anyone whose been through traumatic illness is wired to catch these arguments for reducing services. I’ve had two serious heart failures made worse failure to monitor me. Even though I have been on a list for quarterly check-ups since 2008, I’ve actually only had one in all that time. The rest have been deemed “unnecessary” by some clerk somewhere, or reduced to the one-minute doctor encounter thing we all get.

    It’s about making us “convenient treatment objects” to improve efficiency. The problem for us is we know this is magic medicine to impress the gullible and know better.

    Rebecca, don’t give up your right to remain a complete woman. That includes having children. With our two daughters my wife brought me along for back rubs and yelling at but she was the important one in the room.

    • thesmallc says:

      Scott, it’s nice to hear from the opposite sex on this subject. I am sure men deal with their health issues too, among other things. I am just tired of dealing with GNY-related stuff especially because mine started early.

      It’s sad what the system has turned into. We are living a lot longer these days and because of it, there’s more potential for health problems. I feel we require more attention especially with our history. But there are also too many of us so I can understand the part about “improving efficiencies.”

      My desire is not to give up on trying to live a normal life, as much as my health would allow. I am sure you are very important too, Scott — just think about the “if it wasn’t for you” list.

      • scottx5 says:

        Rebecca, my colonoscopy was done with me knocked out and the doctor took pictures of of what he though important. So maybe you don’t have to be awake for it?

      • thesmallc says:

        Scott, this procedure is less invasive than a colonoscopy (it’s a colposcopy) but to me it is still a sensitive procedure. I guess insurance companies don’t want to cover for anesthesia but also many patients feel it isn’t necessary. I hope this isn’t a painful experience for me.

  5. Rebecca, if this helps in any way possible, allow me to share my experience. I don’t know if it’s the same as yours, but here goes. When I was about 30 years old, I had a pap smear and they found pre-cancerous cells in my cervix. The procedure afterward was out-patient and not at all painful. I never again had those issues.

    Once we’ve been through breast cancer, you’d think nothing could get to us, but in fact it can be the opposite. We get treatment fatigue. So tired of having something abnormal in our bodies. We just want to be well again after such a large chunk has been taken from our lives. I know you’re a strong woman. It has nothing to do with not having balls. It has everything to do with being a human with normal emotions. Please know that you have people in your life and an online community who are there for you. Thank you for letting us know what’s going on. We’re here to hold your hand, even if with our words. xo

    • thesmallc says:

      Eileen, I am so glad you only had to deal with that situation once and that the issue was caught so early. I am not sure if I’ll have the same procedure you had but it is encouraging to know your experience wasn’t painful. For me they might need to do a biopsy to determine what kind of cells I have — if they see something. I have low tolerance for physical pain and would rather be put out but I’ll be awake for the colposcopy.

      I feel more vulnerable after my breast cancer, especially about health-related issues. I want to be done with them.

      I am grateful for all the support I get from you all. And thank you for your kind words. They mean a lot. xo

  6. scottx5 says:

    Rebecca, misunderstood the word, sorry. I had a mild sedative prescribed after they put in an MRI without warning. Second time through was much better. They do it because some people’s blood pressure spikes and distorts the readings. Nothing to with policy, the lab just kept some around to ease the tension. Understand how all the testing can wear you out.

    • thesmallc says:

      No worries! The words look very similar. I really would like a sedative but when I asked they said it is not needed. I may push to have it though. Sorry about all the annoyances you had to deal with due to these necessary tests.

  7. nancyspoint says:

    Hi Rebecca,
    Gosh, I am so sorry you are dealing with yet another health issue/procedure that is very scary. I certainly hope things turn out okay for you and that the procedure itself isn’t too bad. And I’m with you on these ‘womanly’ procedures being awful for various reasons. As for the recommendations on screenings, I think it’s been that way for a while regarding pap smears, but for heaven’s sake, your family history sort of changes things. So it’s a very good thing that you got that second opinion. Try not to over-worry. I know that’s easier said than done. I am thinking about you. Please keep us posted. xx

    • thesmallc says:

      Thank you, Nancy.

      I am more worried about the procedure than the results but I would rather have good results. I didn’t know about the protocol changes until early this year. I would hope that those families with high risks of gynecological cancers can be monitored a lot more closely. I am glad my other GYN decided to test me. I will def. keep you all updated. My procedure is on July 30. Trying hard to relax.

  8. Mandi says:

    I had an abnormal pap after treatment for early stage BC. I freaked out!!! Luckily biopsies showed everything was fine. I think treatment and hormone stuff impacts your cells down there. Biopsies are not very fun either. Ugh. Hope it all turns out ok. I know a few people that had the same result after treatment.

    • thesmallc says:

      Mandi, I am sorry you had to deal with that after the bc dx but glad results came back OK. Believe it or not the procedure is freaking me out even more than the results. I just don’t like anything GYN-related. At all. I hope I don’t faint or throw up. And you’re right about the hormones. I worry Tamoxifen is messing me up and I wish I can stop taking it. I also wish I had a child so I can remove everything. Will keep you posted.

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  10. The Accidental Amazon says:

    Oh, Rebecca…I sure the biopsy is done caringly and painlessly, and that’s it’s negative. You do NOT need any more bad news or cancer. xxoo

    • thesmallc says:

      Thank you for your kind and encouraging words. I am a big baby when it comes to this stuff, and people say, “but you did breast cancer!” — it doesn’t matter. In fact, I may be more scared because of the experience of bc. I’ll keep you all posted. xoxo

  11. Pingback: Sharing a positive experience (because there aren’t enough of them on the internet) | The small c

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