cancerfree2b

Today I see my gynecologist and discuss what to do about my ovaries . . . really.

I can’t make a decision without more information. I am still waiting to get the genetic testing (testing for the BRCA genes) that I need approved by my insurance company. If I am BRCA positive, then my chances of developing ovarian cancer are very high. And, it would also mean that my breast cancer was of a genetic cause. My familial connection to cancer is strong enough to present a pretty significant risk of developing cancer (wish I had known that before now, oh well).

I presumed that my only risk factor was the fact that my aunt had breast cancer. But, I found out through genetic counseling that the fact that there is prostate cancer on both sides of my family – and at the same level generation wise (my father and my uncle – my mom’s brother) increase my breast cancer risk significantly. This is information that has been known for many, many years – the connection between a history of prostate cancer in one’s family and daughters and nieces developing breast cancer. Prostate cancer, like many breast cancers, has a hormonal link. In fact, both types of cancer, breast and prostate, can be treated with hormones (not always, but, it is often part of or all of the treatment depending upon the type of breast cancer or how far the prostate cancer has progressed).

In addition to the prostate cancer history on both my mother and father’s side of the family, there was likely a cancer history with both of my grandfathers. I am less clear on that, but, pretty certain that both had cancer. My maternal grandfather had some type of abdominal cancer. And my paternal grandfather – we believe – may have had colon cancer. I am not so sure about that one. I know that he had part of his colon removed, but, not positive if it was for something like polyps or some precancerous condition or if it was in fact for cancer.

In any case, there is a significant cancer history, especially the prostate cancer on both sides and my aunt’s breast cancer, that increase my risk of getting breast cancer.

Still, without knowing whether I am BRCA positive or not really leaves me unable to make a decision about having a hysterectomy. If I were BRCA positive then I would most definitely have my ovaries out. My oncologist does not want me to have my ovaries removed unless I am BRCA positive. In fact, she even suggested that I consider getting pregnant as it has protective effects in helping to prevent a cancer recurrence. That is not a likely scenario for me at this age and with all I have been through physically . . . I can’t imagine that I would handle a pregnancy well at this point. But, she has told me to keep that option open . . . hmm . . . chemotherapied-45 year old eggs? I don’t think so . . . I wonder if she forgets my age, I don’t know. But, I don’t think it is in my future.

One of the ways you can help reduce the risk of a recurrence of estrogen positive breast cancer is to have your ovaries removed (so you will produce less estrogen, a lot less, but, it surprisingly does not completely eliminate the production of estrogen in your body). Since removing your ovaries does not entirely eliminate the production of estrogen in your body, you then have to take another drug on top of having your ovaries removed to get the “desired” effect. The drug I would have to take is called an aromatase inhibitor. It prevents the production of estrogen in post-menopausal women. It also causes bone loss and bone ache. No thank you.

Another way, the preferred way, according to my oncologist, is to take Tamoxifen for five years. Tamoxifen does not prevent the production of estrogen in your body. Instead, it blocks the effect of estrogen in your body. And, it is temporary. So your body goes back to whatever should be normal for you after you stop taking it.

The Tamoxifen has been hard on me and I have yet to get myself up to a full, 20 milligram dose (so far have only adjusted to a 10 milligram dose . . . but, I have some thoughts on that . . . it is unclear whether 20 milligrams is the appropriate dose as no studies have EVER been conducted on what the proper effective dose should be. It is known that 40 milligrams can be toxic and that 40 milligrams is no more effective than 20 milligrams. But, no one has ever studied whether 20 is better than 10. I can tell you that 20 does not feel good to me, I get so upside down with that dose, yet, 10 milligrams I can handle. So, I may never up it to the 20 (even though my oncologist really wants me to). I want to be a good patient, but, I also want to be able to function and with 20 milligrams I am so dizzy I can’t get up. So, I keep moving back down to the 10 milligram dose.

So these are a couple of my options. And, I have different doctors trying to convince me of one option versus the other. So, door number one or door number two? Neither is entirely attractive to me. So, I don’t really know.  But, the choice could absolutely be made for me – if I were to find out I am BRCA positive -then I would most definitely have my ovaries removed. That is a no brainer for me as the chances, if I were BRCA positive, of developing ovarian cancer would be very high. But, if I am not BRCA positive, then it changes the picture for me. So, I really do need to know more about this before I commit.

Well, that was a ramble.

So, back to my gynecologist appointment. She is going to want me to make a decision about at least one of my ovaries. I had a cyst on my right ovary. It is pretty common to have a cyst. And, I have likely had this most of my life, off and on. But, because of my cancer history there is a concern that what appears to be a benign cyst could turn into something else. Hence, my gynecologist’s interest in having the ovary with the cyst removed.

Apparently if you remove one ovary, your other one compensates – goes into overdrive so to speak. And, as a result, you do not feel a jump-off-the-cliff-instant-entry-into-menopause. So, at this point, I could have the right ovary (the one with cysts on it) removed and I would not feel any different.

But, if I were to remove both then I understand that it would be pretty difficult to handle. Typically a pre-menopausal woman enters menopause gradually. I have not had any real menopausal symptoms (except when I was going through chemotherapy – during that time I was in what they call a chemical menopause – something that many women never leave even after their chemotherapy ends). In my case, I returned to normal cycles about three or four months after chemo. At the time I remember sort of celebrating that, thinking that it was a good thing, that my body was sort of saying F you cancer. But, when I told my oncologist, she was not so thrilled because it means that I am right back to producing normal amounts of estrogen. And, since the cancer I had was fueled by estrogen, she wants me to have less estrogen in my body. So, I don’t really quite understand why a pregnancy would help reduce the risk of recurrence as I am sure you don’t stop producing estrogen during a pregnancy. But, I guess there are other hormones during pregnancy that play a role in reducing your breast cancer risk and risk of recurrence.

I am quite certain that I am not having a baby at this point in my life. But, what this discussion with my oncologist did underscore for me is the strong hormonal connection to the kind of cancer that I had . . . and that it is pretty important that I take Tamoxifen.

And, I probably should try harder to get my body adjusted to that 20 milligram dose (I go back and forth on that a lot – whether 10 milligrams is enough . . . there are preliminary findings – in Europe – that even 5 milligrams of Tamoxifen may have offer as much protective effects as the 20 milligram dose . . . research is currently going on here in the US to determine the best dose . . . but, by the time that is sorted out, I will be past even taking Tamoxifen . . . but, at least it is something that will be known for future patients).

So, I need to leave soon to see my doctor. Hoping that I don’t get some biopsy or some other annoying, but, “necessary” procedure done today.

I really don’t like that . . . going into to see her and then it becomes something like this: “You know, I just want to be sure, so let’s go ahead and do an endometrial biopsy today, okay?” Lovely, I found out . . . after I said yes to that one . . . that they can’t use any anesthesia or anything to numbe you when they do that. But, it is “quick” . . . ugh.

I really wonder sometimes whether all of this is truly necessary. I mean it is pretty compelling to have a specialist tell you that they want to run a particular test, just to make sure, etc. It is hard to turn down these things. But, sometimes you just have to or else you feel like you are completely at their whim all of the time.

Today I will go with the flow and try to keep an open mind, but, also be willing to simply say no, not today.

And, perhaps I will get a little bit closer to deciding whether I pick door number one or door number two.

Well, wish me luck.

Much love,

Lisa

Related Articles

• October Is National Breast Cancer Awareness Month (zocdoc.com)
• Ovary Removal, Mastectomy Cuts Cancer Rates in High-Risk Women (businessweek.com)
• Removal of breasts, ovaries can cut cancer risks for some women, study says (seattletimes.nwsource.com)
• Thinking Pink Hasn’t Helped Find Causes of Breast Cancer (health.usnews.com)
• You: Breast, ovary removal found to raise cancer survival rates (latimes.com)
• Dense Breasts Linked to Breast Cancer Return (webmd.com)

I am tired tonight. I spent pretty much the entire day and evening in bed. Last night I slipped when I was walking down the stairs . . . thought I had reached the bottom, when I hadn’t . . . ended up kind of wrenching my right side, the side that I just had surgery on. So, it was a little bit of set back. I was in a bit of pain last night and still am today. But, it is okay. I see a surgeon tomorrow at 10:00 am.

Unfortunately, I will not be seeing Dr. Sherman tomorrow (I will see his new associate instead as Dr. Sherman is out of town). But, I am sure it will go fine.

Hopefully this surgeon will take the drains out.  It is so uncomfortable to me to have these coming out of my side and back. There is just no comfortable position at all and very little sleep right now. It would be so great if I could start the weekend drain free . . . that would be so nice.

I am so, so tired. Maybe I will be able to get some sleep tonight. Well, I guess I don’t have much to say 🙂

I have the appointment tomorrow up at Cedars Sinai (thank you again Sandy for taking me 🙂 and then I have an appointment on Friday with my gynecologist. We may figure out what to do with Lisa’s ovaries . . . so not looking forward to that whole discussion. But, got to deal with it. I just hope to get out of her office with good news and no painful biopsies.

I just want the rest of this week to pass by and get to the weekend . . hopefully drain free. And hopefully spending time with my best friend.

I am so done with cancer and its aftermath . . . so over it, so ready to move on.

Please keep those prayers and positive vibes coming my way. I greatly appreciate it.

Love and peace,

Lisa

Pet peeve number one: Breast cancer fundraisers that use alcohol to raise money (alcohol intake increases a woman’s chance of developing breast cancer).

Pet peeve number two: The terms your “new normal” (These words are used all over the place now – support groups, articles – it seems to have been coined in the past several months and it is every where now as the way to describe how you should expect to feel after breast cancer . . . your “new normal”).

Maybe each of these deserves a separate post, I don’t know. But, here goes with pet peeve number one:

Breast Cancer Fundraisers That Use Alcohol As A Means To Raise Money:

Last summer I was invited to a fundraiser for a breast cancer organization. It was a tequila tasting. A $50.00 ticket gained each person entry into the fundraiser and included many tastings of different tequilas. Apart from the booze aspect – which did not appeal to me at all – the event sounded like fun . . . music at an outdoor event where there would be many people gathered all in support of a good cause. But, the whole idea of an event that was intended to raise money for breast cancer that is centered around drinking alcohol troubled me.

Since the tequila tasting fundraiser, I have been invited to several breast cancer fundraisers that use alcohol as the selling point . . . wine tasting events etc.

A woman’s risk of getting breast cancer is increased with alcohol intake. The more drinks per week the more the risk increases. I have friends who are breast cancer survivors who are very active in raising both awareness and funds for breast cancer research. They are amazing women. Recently one of these women invited me to a wine tasting to raise money for a breast cancer walk. I am sure it would be a fun evening. But, the idea of gathering with fellow cancer survivors and downing drinks, knowing that the alcohol is not good for us, really does not appeal at all.

There is no doubt about the connection between alcohol intake and increasing the risk of breast cancer. So, I have a problem with fundraisers that use alcohol as the focus for the fundraising event i.e., “Wine for the Cure” . . . it just bothers me.

I have never been a big drinker. For several years I was a vegetarian and did not drink any alcohol. I did this with the specific goal of reducing my breast cancer risk (a little ironic, I guess). I have since found out that certain aspects of my vegetarian diet may have actually contributed to increasing my risk of getting breast cancer . . . now that is really ironic . . . but, that topic definitely deserves a separate post.

Pet Peeve Number Two: Your “New Normal”:

Okay, I am going to say it: I really, really resent the terms “new normal”.  Don’t get me wrong, I know that things will not ever be the same again post cancer. But, it seems that recently the words “new normal” are cropping up everywhere as the answer for what to expect after treatment.

I know that some women never fully regain their former energy level post cancer treatment (chemo is a real bitch). And, having gone through chemo, Herceptin and radiation, I can say that I have never felt more drained of energy as I did during and immediately post treatment.  And, having had multiple surgeries that took away body parts, feeling and left multiple scars, I can say with confidence that whatever I am returning to is not entirely normal.

But, I really resent this “new normal” thing.

I mostly resent it because it is used as the answer to so much now that is survivorship related (survivorship being that period of time post treatment).

Here are some of the questions and answers I have heard/read recently:

When will my blood counts return to normal? They might not ever return to normal . . . you may find that you hover below normal counts for the rest of your life . . . that will be your “new normal”.

How long before I get my energy level back post chemo and radiation? This varies from woman to woman and for some women it isn’t about getting back to their pre-cancer energy levels, but, instead about finding and accepting their “new normal”.

When will I get over my chemo-brain? For some it can take a year or more and many women complain of long-term memory problems and mental confusion that lasts for years and years. Many women cope with this by making lists and posting reminders around the house and taking on less responsibilities at home and work . . . adjusting to their “new normal”.

Okay, so those are some of the examples . . .

It suddenly occurs to me right now, as I am writing, what really bothers me about the terms. It is that instead of offering something proactive to address the problems that many women face post breast cancer (and that cancer patients in general experience post cancer) we are told to simply accept this new way of life.

For example, instead of telling women after breast cancer that memory problems and an inability to focus post chemo may mean that you have to take on less activities . . . how about providing a solution to the memory loss and focus problems?

What about treatment for that? I don’t mean more medication, I mean working through puzzles perhaps to rebuild synapses in the brain (there is proof that learning new things helps rebuild pathways in the brain).  These types of things are used all of the time to treat a person who has suffered a brain injury. Computer programs have been developed to help treat dementia (research studies confirm that these programs are effective). Yet I have never heard it suggested that anything be done to help rebuild/repair the chemo brain.

I know that my life will never be the same post cancer. My life forever changed the day I was diagnosed with breast cancer. But, there is something hopeless sounding to me about “finding your new normal”.  Maybe I am unrealistic in my expectations for my survivorship. But, I refuse to accept that my brain will not make a full recovery from the effects of chemo. I refuse to accept that I will not be able to do as much post cancer as before cancer. I refuse to accept that I will not have a satisfying sex life after cancer, that I will gain a bunch of weight from taking Tamoxifen, I refuse to accept that I will not be attractive post mastectomy and reconstruction, that I will have a poor body image. (This is just some of the crap that breast cancer patients are told . . . well, I think it is crap :))

As a cancer patient and now survivor (so I am told) I feel like so much is foisted upon me that I am supposed to just take, accept.

I find this to be very defeating. And I guess I just refuse to accept it all. I think it is a real cop-out for doctors and counselors to use the terms “new normal”. Instead, I think these care providers should be focused on providing care . . . real solutions to these problems instead of preaching the “new normal” and passing out anti-depressants.

Just my thoughts on it.

Love and peace,

Lisa

PS (Yeah, because this post really needs to be longer :)) I don’t know if you can tell, but, I am a little pissy today. I am angry right now.  I know exactly why . . . it is the drains that I have in my body post-op. These are really bothersome to me. I will likely get all three remaining drains out this Thursday when I return for my first post-op appointment up at Cedars Sinai.

I know I will feel better then. But, right now I am pretty fed up with this whole cancer crap. I am tired of feeling the physical pains of it all. And, yes, I know I have been writing this past week about how grateful I am that I am in so much less pain with this most recent surgery than I was after past surgeries.

I am feeling less pain and I am grateful for that. But, I am tired of not being able to sleep comfortably. It has been more than a year now that I have not been able to sleep on my side or stomach . . . not since the mastectomy. I am so tired of not being able to get a night’s sleep. It has made me kind of cranky today.

Related Articles

• Alcohol companies’ pink campaigns anger breast cancer survivors (usatoday.com)
• Drinking, Breast Cancer, Heart Disease, and Donations (georgevanantwerp.com)
• October Is National Breast Cancer Awareness Month (zocdoc.com)

I was on Facebook earlier today and updated my new status to: “Yay, it is Tuesday night!” . . . It was Monday night . . . oops. 🙂

Okay, so I am still a little out of it since surgery. Maybe it is the occasional vicodin that I take for the pain (I can supposedly take one vicodin every four hours . . .yikes). I take it very sparingly . . . if you’ve followed my blog much, you’ll know that I really do not like taking medication. But, pain is pain, so sometimes I take a pill. Still, I am so pleased with this post surgery recovery as I have had so little pain . . . compared to prior surgeries. It is a real relief to be so far along this soon after surgery. I am so grateful.

Still, out of it enough to not know what day of the week it is 🙂

So, the real reason I am blogging right now . . .

A very close friend of mine asked me today why it is that some people say that they are in remission. My friend was pretty much trying to figure out why it is that I do not say I am in remission . . . why my oncologist does not refer to my current status as “remission”, but, instead, considers me “cured”.  I didn’t really have an answer for my friend. I know why he is asking, he is worried. The headache thing perhaps, the fact that I am going to have a scan sometime soon, perhaps . . . I don’t know.

But, I didn’t have a way to answer his question very well. I stumbled along in such a way which almost made it sound as if I were trying to cover something up.

It has been a long time since I have been in the “reassuring” my friends or family mode (which really is just a way of reassuring myself . . . if I can convince everyone else I am going to be fine, then maybe I will start to believe it).  I guess I just wasn’t prepared. I heard my poorly formed sentences come out of my mouth and watched his face sort of wilt a bit. What could I do? I was tired. The question came as a surprise to me. But, a fair and reasonable question all the same.

I don’t use the word cured much, especially around my friends who have cancer or who have had cancer. I think I am afraid to use it for fear that someone will challenge it, tell me that the correct term is “remission”.  But, I also refrain from using it in that setting because some of my friends are battling cancer right now and for some it is their second or third time they have done battle.

While I don’t use the word a whole lot, I don’t question it either. My oncologist used it and I didn’t press her on it. I didn’t respond with my usual deluge of questions (sometimes I don’t know how she puts up with me). I did ask her to repeat what she had said . . . “We don’t usually continue with those tests in a person like you who we consider cured . . . ”

That is what she said, that she considers me cured.  Cured.  I grabbed onto that word.  I cling to it . . . and, yes, I know that my doctor is not God and is not a fortune teller. She is a scientist (truly, she is one). And she is compassionate, smart and she knows me pretty well. She knows that I am aware that she is not God, that there are  no guarantees and that it would do me a lot of good to believe that I am cured, to hear those words, to relax a bit. I am not suggesting that she lied to me. I just think she knows me well enough to know that she can say what she thinks . . . she thinks I am cured.

Back to my friend. I didn’t know what to say. The question really caught me off guard and, as I said, that made my response seem dishonest somehow. At least that is what I think it seemed like.

I have known from day one of this cancer roller coaster that my life would never be the same again. But, as I move onto moving on with my life I find myself stumbling so often . . . so often I am unprepared for those reasonable questions. It comes up in my work life (not that I have much of one again yet, but, I am working on trying to) and it comes up in my personal life. I just find myself stepping into situations for which I am totally unprepared. You open a door that you think you have opened before . . . but, this time what is on the other side is completely different.

Related Articles

• What We Can Learn From ‘Curable Cancers’ (newsweek.com:80)

I woke up feeling a lot better today. I still didn’t sleep much at all . . . it is hard to find a comfortable spot with drains coming out of your back and sides and front (lovely, I know). Just when I sink into the pillows and think “Ah, I can rest now” . . . I move just an inch or so as I am drifting off to sleep and I feel a jab from the drains getting bumped by my moving slightly. The good thing about this surgery is that I can actually distinguish this kind of pain . . . before I was in so much pain that it was just everywhere. This is nothing compared to last go round.

But, the living alone thing has not gotten easier. I can’t lift much yet. So, cooking is kinda tough and just getting a glass of juice isn’t so easy. But, I am getting better and better every day. Today I am going to attempt a one mile walk (did a little over a third of a mile yesterday and it felt good to do that). So, hopefully today I will get to a mile and then two miles by next week. That is the plan.

Thursday I see my surgeon up at Cedars Sinai – my first post-op appointment. I am hoping to get my drains out on that day. That would be really great. After you get the drains out, you can usually shower again . . . woo-hoo!

Friday I see another doctor to follow up on what to do with my ovaries . . . lovely . . . and also to likely get a biopsy. I will be seeing my gynecologist – she is following cysts that I have on my right ovary. I am still waiting to get the genetic testing to learn whether I am BRCA positive. (My insurance company denied coverage of this $4,000.00 test – even though I meet the national guidelines for testing – so, I have to fight that battle soon and get the testing approved). The point is that if I am BRCA positive, then I will have my ovaries removed (women who test positive for the BRCA gene are more likely to get breast cancer and ovarian cancer).

I am looking forward to Thursday’s appointment . . . hoping to get those drains out . . . I know that some will come out on Thursday, but, hoping my surgeon removes all of the drains. Friday, I am not looking forward to so much as there is a possibility of having a procedure done during that appointment. So Friday may be a bit uncomfortable, I don’t know. Hopefully it won’t be too bad. Let’s just say that I am looking forward to Saturday! 🙂

So grateful to be feeling so much better. Can’t wait to be healed up from this surgery and back to my life!

Love and peace,

L.

Related Articles

• Ovary removal may benefit high-risk women (msnbc.msn.com)
• Ovary removal helps women with genetic risk lower odds for breast, ovarian cancer (healthzone.ca)
• Breast Cancer Gene Test, Preventive Surgery Save Women’s Lives (webmd.com)

I had surgery last Monday.  Cedars Sinai is quite a place. It was a great experience . . . given that I had to do it, that is.

The surgery went well. Today I took my first complete look at my newly constructed/reconstructed breast. Up until today, I only had a glimpse here and there. I wasn’t ready to see the final (or nearly final) product yet.

I wish I had been able to have Dr. Sherman as my surgeon from the beginning. Not only would I have been spared two surgeries, but, I would have a different result.

I got Dr. Sherman because my prior surgeon over-expanded my right side which caused permanent damage to my skin. Having seen what he has been able to do with the compromised side, I can only imagine what it would have been like if I had been able to have him do the procedure in the beginning.

I have a horizontal scar and a vertical scar on my left side. Plus a signifcant (and uncomfortable) scar under my left arm. The under arm incision was apparently needed in order to be able to move the latissimus muscle around from my back to my front. I also have a pretty significant scar on my left side of my back (where my prior surgeon went in to “harvest” my latissimus muscle). So, four fairly significant scars.

I have no idea how Dr. Sherman did it, but, I have no scar under my arm on the right side, no scar under the breast . . . nothing. The only scarring is where new skin had to brought to my front (from my back) to replace the skin that was damaged by the radiation and subsequent over-expansion.

Unbelievable. So, I really, really wish that I had been able to have Dr. Sherman from the get go. But, I am pleased with the result . . . given the condition that I was in when I came to Dr. Sherman. It is clear, however, that had I been able to go to him in the beginning that there would be no way to tell that I had reconstructive surgery . . . that is how good he is. The only scar would be the back scar, the rest he incorporates into the reconstruction. He is amazing.

Well, enough on that. I am tired, very, very tired.

For the most part my days and evenings are spent in bed. I have a nurse who comes in to check on things (I saw her Saturday and will see her again  on Monday and Wednesday).

Typing is very difficult. lifting my arms in anyway that engages my back muscle or front is very uncomfortable. It is pretty difficult to do much. But, I am getting better every day. I need to rest my arms and give myself time to heal. The latissimus procedure takes quite a bit longer to recover from than other types of breast reconstruction. But, the end result is worth it.

Oh, Dr. Sherman also did a revision of my left side. This makes a big difference to me, it is a nice improvement. So, I did have a little bit of surgery on my left side this time . . . again. But, it does not cause me much pain. It just means that I have limited use of both of my arms.

I am supposed to have scans this month. I am not sure I will be able to do the scans as I do not think they will be able to get a vein right now that will support the force of the contrast dye. (When I was in the hospital I had to get a new IV placed each day as my veins would infiltrate . . . basically just leak out causing the area surrounding the IV to swell up. So they kept moving the IV and ultimately ran out of places to move it to. So, I am not sure how that will affect my ability to get a scan.

I am nervous about the scan or scans (I am not sure if it is just one scan she wants to do or several). But, I have to do it I guess. I just want to be done with this stuff. I am so, so, so, so, SO tired. Tired of tests, tired of getting poked with needles, tired of surgeries, chemo and radiation and tired of taking drugs.

I am very tired of the side effects of the drugs . . . last night I nearly passed out because my blood pressure dropped so low I couldn’t stand up. I know that sounds a bit dramatic. But, it happens when I take narcotics. I have low blood pressure to begin with – my blood pressure is typically about 100 over 50. In the hospital it dropped to 78 over 40.  (I am told it drops like that because of the pain medications).

Anyway, I just want to be done with all of it. God, I hope it is all clear and I can just move on with the rest of my life, cancer free. I appreciate your continued prayers.

Well, I apologize for what is probably a pretty disjointed post. I am really tired. I just wanted to get something down here so everyone knows I am doing well and getting better.

Okay, my back is telling me I am not to write any longer right now 🙂

Thank you for your prayers and positive thoughts. I greatly appreciate it.

Much love,

Lisa