Dis Breast Cancer Survivors Part IV - GAGWTA

[slg]

I see an oncologist on June 5. Its pretty much a done deal that my ovaries are coming out. I feel pretty devastated by this, but there is nothing I can do. I know that not doing it will make me even sicker, so I will have them out as soon as I can get a surgery date. I do have a vacation planned for New York July 10-20, disney cruise July 20-28 and then a week at my in-laws in Cape Breton from July 28 to August 5.

I hope that we don't have to cancel this trip. Hopefully my mammo will be clear and the oncologist won't be too alarmed by my ultrasound that she feels that I can wait until the fall for my surgery.

Its one step at a time. I go to the high risk centre on Thursday for a clinical and a mammo, and then wait for the oncologist for June 5.

As for the mastectomy, I'm scared to death of it and at the moment and not wanting to do it. Perhaps I'll change my mind. I know that if I have any type of cancer of the breast, no matter how small, both the breasts are coming out! But until then, I don't know.

Thanks for the reply. It was hard with my mom and now her battling ovarian cancer doesn't make it any easier. I'm an only child so my dad is very upset. Thankfully I only have boys...3 of them, so I'm not as freaked out as if I had girls. I'm also hopeful that research will improve before they have children.

All the appointments and tests and surgeries and decisions. So overwhelming and I can't even take solace in planning my disney trips because I'm scared I can't go.

 

[Pea-n-Me]

As for the mastectomy, I'm scared to death of it and at the moment and not wanting to do it. Perhaps I'll change my mind. I know that if I have any type of cancer of the breast, no matter how small, both the breasts are coming out! But until then, I don't know.

The problem with getting cancer is that it can spread microscopically before you find it. Dr. Susan Love, who's one of the world's authorities on breast cancer, says that when you find a lump it's been growing for as many as 7 or 8 years. People die from cancer because of the spread to other organs. If you have a chance to prevent that, you should consider it strongly. No question it's scary, but then again, so is getting cancer and living with the accompanying issues that brings. I'm nine years out and there's not too many days that go by that I don't worry about that microscopic spread that may have occurred, or that the chemo and radiation I had could affect my long term health, etc. There could be other options such as taking tamoxifin, but those meds can have side effects and you're young, so it could be a long time, but it's something to talk to your oncologist about. Be sure you see not just a GYN oncologist, but one who specializes in breast cancer as well.

I hope that didn't scare you more. You certainly don't have to make any decisions right now. Remember, as scary as it can be, knowledge is power.

 

[slg]

Thank you for your perspective. I guess its just a lot to take in right now and the idea of losing my ovaries is so upsetting to me that I do not want to think about losing my breasts as well.

Perhaps after the surgery, when I feel I have healed emotionally and physically I can think about the mastectomy. There has been a study that just came out one month ago that shows that women with BRCA1 have a 50% risk reduction in breast cancer if they breast fed for over 3 years and I breastfed my boys a long, long time. There are so many things to think about...I will see what they say to me at the high risk centre.

You did not scare me. I appreciate all perspectives.

 

[Pea-n-Me]

You did not scare me. I appreciate all perspectives.

Good.

There are stories out there of people who've been faced with similar decisions that may be helpful to you.

There's also a website: http://www.facingourrisk.org/

 

[snappy]

Sig, I saw your initial post last night but not Pea n me's posts and your responses until today. I am glad she has posted info for you. It is always helpful to have info, in my opinion, info is truly power with cancer.

Even though each women's situation and risk differs, it is helpful to hear the stories of others.

I did a lot of reading when I was diagnosed 8 years ago at age 50, many books, including the Susan Love book. i think it is embedded in my personality, the information seeking gene. I especially enjoyed reading books written by others with cancer, even knowing my case was different. It helped me feel connected to other "sistas" if you will and not isolated.

I agree that an oncologist will be in the best position to guide you. It sounds like you have a high risk center in your area. I know many women travel to get care, whether it is cancer avoidance with prophylactic surgery or treatment after being diagnosed.

I am glad that Pea n me posted the link to facingourrisk. org. I frequented it for more than a year when I was considering reconstruction. There was a very active discussion board with many women who were BRAC 1 and 2 positive. I found the website very helpful with my decision to go forward with my delayed reconstruction witch I chose to do in 2006.

I decided to test last year, and was negative. My mom was diagnosed in 2008 at age 78 with almost the exact type of breast cancer, same location with the exception that she did not have an invasive component.

I wanted to know if I had the gene since I do have two daughters, and if I tested negative, they would be able to follow the guidelines of starting mammograms 10 years before my cancer was detected, which would be age 40, the normal age for this to start anyway.

I can appreciate how difficult this is for you due to your mom's battle of her own. Also, I understand how upset your father must be.

Generally, vacations can be helpful with taking your mind off things, so I hope you are able to go on your trips. That would obviously be a good thing to run by the oncologist, so I really wish that was scheduled sooner, like right after this mammogram next week rather than later.

Although I wish your appointment with the oncologist was a little sooner, I am glad your mammogram is next week. That will be additional info for you. I agree that it would be wise to see an oncologist that also is experienced with breast cancer to help guide you.

I assume that the mammograms you have had in the past were of the screening kind?

My understanding is that prophylactic surgeries reduce the risk greatly of getting cancer. Were you able to discuss this with a health care provider well versed in genetic risk when you had the BRAC test and received your results? Here, I was able to go to a breast surgeon who I already knew and had a lot of confidence in. My risk was not that high of being positive, but I did it for info regarding my girls and my 54 year old sister mostly. The surgeon spent a lot of time counseling me beforehand, and it was very helpful.

Prophylactic breast surgery is a very daunting thing to face. However, many doctors now do this surgery, and the types of reconstruction available have really improved. Obviously it still take a long recovery, and if your sons are young, you will need a lot of help.

That is great info about the study about long term breast feeding reducing the risk for women who were positive. I want to read up on that. I would also ask the oncologist about it. I did long term breast feeding with all three of my babies too, and remember reading this history of breast feeding reduced my risk of cancer.

The concern you feel is very normal. You have a lot of decisions to make, and you don't know all the facts yet. I will say that I felt more relaxed once I knew what I faced, even though it was a mastectomy. The unknown is the scariest part of this, along with waiting for appointments, tests and results, which I am sure you have faced for over a month now. My worst time was late at night not being able to sleep and resorting to reading websites. I had to stop that, start taking a sleep aid.

I wish you the best, and am glad you came here to post. We have a number of long time posters here, but welcome new posters it seems like every week, many that in end up being part of our continuing group.

Please let us know how Thursday goes.

And feel free to ask questions or just share your concerns. That is why we are here.

 

[slg]

http://breast-cancer-research.com/content/14/2/R42/abstract

Above is the abstract from the breastfeeding study. Apparently long term breastfeeding really only significantly reduces breast cancer risk in BRCA1 women, which is what I am. So if you were negative, your long term breastfeeding didn't significantly reduce your risk...I think only 4% compared to 50% with BRCA1 women.

This has major implications for me in terms of my decision to proceed with the mastectomy. Also, having the ovary removal before 50 apparently reduces the risk by up to 50% in BRCA1 women, and almost 75% in BRCA2 women. I don't know if those two risk reductions compound, meaning if I was an overall 66% risk of bc, then breastfeeding and oopherectomy reduces my risk to 16.5%, or I can only have one 50% reduction and I can only go to 33%.

If my risk can be reduced to 16.5% and the general population is 13%, plus mastectomy only reduces the risk to 10% because there is still a possibility of getting breast cancer, then the mastectomy doesn't make sense to me. We don't give the general population a mastectomy with a 13% risk, so a 16.5% risk doesn't seem signicantly higher.

However, I don't know if the risks are compounded. And I don't know if anyone knows that at this point. That is the problem...there are too many questions and not enough answers!

I so appreciate your taking the time to write such a comprehensive post. I live on Vancouver Island and the high risk centre is in Vancouver (on the mainland), so it is a ferry trip across which is very inconvenient, but not impossible. The nurse practitioner who is in charge of my case recommends I do my screening over there rather than here as the radiologists are specialists in BRCA screening and will do a better job. I don't know if this is true or not, but I'm going to go there for my first screening anyway.

My other two mammos were diagnostic as my doctor found a lump behind my left nipple. I had an ultrasound with my first and it was determined that it was a cyst. The second mammo didn't include an ultrasound as the cyst was identical. My last mammo was August 2010.

I so wish my appointment with the onco was sooner too. I will talk to the nurse practioner when I go to Vancouver on Thursday and ask if I can go on a wait list. However, there is only one gyn/onc in Victoria and she is in high demand. I would call myself but the appointment is at the cancer centre and I don't think I can do it myself. Will check Thursday.

Last night I had another big cry. My dh has been super supportive, but I know he's tired of my talking about it all the time.

I have checked the FORCE website and I have spent hours researching medical studies and websites. I am a researcher so I have to know all that I can know. I'm not sure this helps as now I am just glutted with numbers and really, it can be a done deal by now.

Its hard to feel so helpless. I have always been so healthy...I work out, eat well, take vitamins, don't smoke or drink (much), stay slim and now I feel that no matter what I do, cancer is inevitable and that is hard for me to wrap my brain around.

Thanks for listening.

 

[luvmarypoppins]

slg - glad you made it over here from the other thread. I have a different type of cancer (thy) so I really cant comment much. But glad you are getting alot of useful information here from these wonderful ladies. Wishing you all the best. Take it one day at a time or it can get overwhelming.

Lisa - Was thinking of you when I saw a coupon in the paper for some new fruit based ensure products. I havent seem them in the store here, I wonder how they compare to gatorade or something like that. Maybe something you could try. Hope you are regaining some strength.

PatsMom - hope your drs. visit go well, even if you have to wear the boot. Have a wonderful and relaxing vacation!

Laurie - great informative post

smiley -is slg going to where you went?

I am taking a paperwork break. I think I have 4 more pages left to read and review. My head spins. Ds3 is taking ds2 to one of his meetings today. It will be 2 hours of meetings and then the at least 1 1/2 of driving back and forth probably. Sweet of him.

GAGWTA.

 

[snappy]

Sig, for sure your healthy lifestyle is a huge plus for you, in prevention or for fighting either one of these cancers should you face that.

I do not understand how the risk statistics work together. That is something an oncologist might be able to shed more light on; however, as you said there is a possiblility that no one knows if the statistics that go in your favor compound or not. I know though that visit is on June 5th is a month away, and you have this stressful period to wait to ask your questions.

Thanks for the link for the study, you sure saved me a lot of searching. Although that study looks very promising, it is limited. I guess personally I would be somewhat leery of bypassing the prophalactic mastectomies, if that surgery is done prior to actually having cancer.

If breast cancer or any cancer for that matter is already invasive, then mastectomy gives no guarantees. However, again personally, I see some validity to removing the offending tissue before it strikes, if you do carry the gene.

However, until you have your mammograms and further testing on your ovaries, I just don't know if you have the information you really need to make an informed decision.

I know all the research is making you crazy, but I do think being informed is vital. I can also relate to your concern about driving your DH crazy. I felt I did the same. You get to a place where you feel sensitive about worrying your loved ones. When you feel that way, come here, feel free to let your feelings out. I would also suggest you inquire about support groups in your area, whether brick and mortar or virtual.

It really helps to have the means to vent, and you will find it easier to talk to someone who you are not closely related to on occassion.

And like I said, we are always here. We tend to stray off topic alot, from both breast cancer issues and Disney discussions for that matter.

We also have our moments of silliness. Sometimes a little humor goes a long way.

 

[slg]

How very, very kind of you to write. The disboards are so wonderful. Even without talking about disney, the people are very supportive.

I just called the nurse practioner in Vancouver at the high risk centre and she gave me the oncologist number and told me to go ahead and ask to be put on the waitlist. She's not sure it will help, but it can't hurt! She's not sure what the onco will say about my ovarian surgery...so the sooner I find out the better. I suppose it depends on what the ultrasound tells her.

I have so much to find out and think about...I have read many, many studies and nothing is conclusive. I will have to talk to more specialists and find my own answers.

But it feels good to talk about it here. There is no support group in town, but I may be connected to some people when I go to the clinic on Thursday.

I will post and let you guys know.

Thanks super much for everything. Hugs to all of you. Its a wonderful thread.

 

[snappy]

One thing came to mind from your post about the nurse practioner telling you to call the oncologist's office to be put on the list.

I have been told by my internist that if you have your doctor call directly to the doctor you are trying to get in to see, that can expedite you being seen.

I am not sure what your visit Thursday entails, but if you are having a diagnostic mammogram, my experience here has been that means a radiologist reads the mammogram before you leave the facility. Some times you actually get to see or talk with the radiologist.

If you do happen to see a doctor, have the phone number and name of the oncologist with you. You might consider asking the radiologist or any other doc you see to call for you.

Just a thought.

 

[slg]

I have referrals for the onc both from my dr. and from the high risk centre. I have the earliest appointment I could get. I left a message at the onc's office the a.m. but haven't heard back yet. i think she only does consults once a week because she is in such high demand for surgery (being the only one here) and of course the surgery is triaged. I think I'm high on the list though.
My dr. was surprised that I got an appointment in 6 weeks.

In Victoria, a diagnositc mammo is great as you see the doctor right away and they do an ultrasound if necessary and then a biopsy. however, I'm going to Vancouver for my mammo and so they will just take the pictures and it might be 2 weeks before I get the results. Then, of course, I've got to go back if they have to ultrasound or biopsy. Crazy. i wanted to do the mammo here, but the centre said they have highly trained radiologists in Vancouver who work exclusively with BRCA so she thinks I'll get better screening there. However, I will go nuts waiting!

I am going nuts already. I hope that the rest of my life isn't going to be like this.

 

[snappy]

It is great that the doc you are seeing is so highly regarded. Waiting sucks, but seeing someone you can have utmost confidence in is golden.

I see the wisdom in having the mammogram in Vancouver if the radiologists there have more experience with BRAC 1 and BRAC 2 cases.

I can tell you have really been doing your homework on all of this. But I still want to share the approach I used with the breast cancer surgeon as well as the plastic surgeon later. I questioned each of them as too how many of the procedures I needed they do each year.

With the plastic surgeon I asked for and was given books with pictures of the before and after surgery results on the free tram flap I had.

It made it all more real for me and helped me figure out what to expect in a more concrete way.

I feel for you when you put into words your fear about the rest of your life being like this. You will at some point find your new normal. Things will be different. But I think it is good that your mom had the BRAC test so that you moved to do the same. None of this is easy but I am glad the test was available to you. This is not something you want to be in the dark about, even though it is so very hard to get all the info you need to make the decisions you will have to make.

Are you able to sleep at night?

 

[snappy]

Thanks MaryAnn for steering Sig over to our thread. You are a dear to do that.

 

[smiley_face2]

Hi there slg!! I am right across the Straight from you on the Sechelt Penninsula. I have been on this cancer battle for a year and a half exactly! I travel by ferry also into the BC Cancer Agency in Vancouver for all my tests and my oncologist and surgeon are based there, I even had my first surgery there. They are wonderful people who are sooooo accomodating when you tell them about where you live and that you have to travel by ferry. They always book my appointments in the window of time I gave them and try to group tests together so I can get things done in one trip. I still have not done my genetic testing, I think I am hiding my head in the sand a liittle. It's been such a horrible long year and a half, I don't want to go looking for more worry, but I will do it because I have 2 daughters and 4 grand daughters and a very extensive family history of ovarian and breast cancer. I had my chemo administered in my local hospital, and the doctor in charge is not an actual oncologist but is working under the oncologist and is in constanct communication. So it was nice not to have to do the ferry trips for that, but radiation I had to ride that stupid ferry every day of the week for a month! thank goodness for the travel passes because it's pretty much $100. every trip! My cancer came back after my surgery and before I was even finished chemo, I planned a road trip to Disneyland while I was doing my chemo, it helped to distract me and gave me positive thoughts, surely with all these reservatiions I will be fine to go right?? lol... anyway, we did go, it was awesome, stopped in San Fran and along Big Sur, Sanoma etc. I came back and had my second surgery, then started radiation 5 weeks later and started the planning for taking our 2 oldest grand daughters to Disneyland before Christmas, which we did! and now, even though I don't know if the cancer is sneaking back again, or my genetic tests will show me with the gene...I am obsesively planning a 3 week roadtrip to California, Disneyland and Vegas for July! this time we are taking our oldest daughter and our 3 year old grand son! I find making all these plans right down to what dinner and where, to be very distracting and life affirming! Our dear son lived life like there was no tomorrow, he was so happy and full of life, he did so much in his short life and I thank God for that all the time! The husband of one of the ladies here, has a saying "don't bleed until you are shot" I told my oncologist that and he thought it was super! so did the radiation people... lol..
Did you have to fill in the family history forms to get the genetic test? I have this form to fill in, I am going to do it....tomorrow

 

[luvmarypoppins]

Good afternoon ladies

smiley and Laurie - what wonderful and informative posts!

slg - seems like you are doing good research. I wish I could find some research about my cancer. My onc. only gets about 2 patients with this type a year if that. And its worse for me since they say my rare variant is usually found in men, not women. What can I say, I keep them on their toes. Someone has to be the different patient and I guess its me

Diana - how are you feeling?

Sha - have you finalized any plans for next week end? Would love to see you and your mom. I have to see whn our adrs are for on the 19th.

Lisa and Cheryl - thinking of you both too

Well successs with the endo! Yeah. My new appt. is July 16th. I am taking it, but the week before I will have to go and get a sono. Only bad thing is that I will have to get it in the afternoon and that week I am teaching at our church. I will be exhausted, so I guess lying on the table will be like a rest for about a half hour,

My meeting today is cancelled till next week. Oh well at least I have all my paperwork done.

Ds meeting went ok yest. Another meeting sat. and then something else to do. I need dh to call and verify some things. Seems like we are getting different information so it needs to be verified etc.

GAGWTA. Have a great day everyone.

 

[slg]

Snappy:

I am able to sleep at night...strangely. I have been taking adrenasmart and a small amount of clonazapam so that helps.

Smileyface:
Greetings from BC! You are so brave. What a horrible time you have had and yet here you are planning disney trips. It encourages me greatly. I have these three trips lined up and I feel like planning is tempting fate...so I refuse to do anything until I get the all clear. I can't plan more than a few days at a time as the future feels so uncertain. However, here you are, planning away and optimistic. Bless you.
What type of cancer and what age were you when you got it? With a history of bc and oc in your family, just go ahead and get the genetic test. Since you already have cancer, you should know that women with the BRCA1 mutation have a better chance of surviving cancer...both ovarian and breast...than women who do not. Plus, if you do have the gene then the will monitor you and possibly treat you differently. So do it....now! It takes a really long time to get the results. It took my mom 3 months to see the counsellor, and then 5months for the results to come in, and then 2 months for my results. If you have the money, you can do it privately and then you get the results in 2 -4 weeks, but the cost is $4000. My parents have the money and said they would pay, but when push came to shove, they didn't. I was/am angry at them as I feel I lost about 6 months of prevention and perhaps that 6 months may have saved my life. I'm just praying I already don't have cancer, otherwise I'll really be upset at my parents and they have enough to deal with without me being upset.

I did fill out the forms and although there is a history of many types of cancer on my maternal grandmother's side...including male breast cancer, ovarian cancer, stomach cancer, uterine cancer and leukemia,and ovarian cancer, all from the same family and siblings...they thought my mom's chance of having brca was low! HA! I KNEW she had it...I've been doing my research and it was no surprise to me although my doctor was flabbergasted. They don't know everything is all I can say, so now my trust in what they say is not at an all time high. Especially since I've complained about pain in my right ovary since January 2011 and my doctor said there was nothing there and sent me to acupuncture, massage, physio, internal phsyio, counselling and even put me on anti-depressants. She kept saying that ovarian cancer was silent, that my risk was minimal and because I was slim she would be able to feel anything that was there. Well, after about 8 pelvic exams and one abdominal ultrasound, it took 16 months and a trans******l us to find the 3.5 cm cyst on my right ovary. AAAAA. Hopefully its benign. My dr. says it is, but my trust in her is not high right now so I'll wait until I see the onc.

Whew. Once I start, its hard to stop.

Thanks for listening everyone. Hugs to all of you battling and surviving cancer. Life happens in between all these appointments and it can be beautiful

 

[Dancind]

Sig, I'm right in the middle of it too. Surgery is scheduled for May 21. I have a couple of trips planned that I was questioning when first diagnosed on April 17.

I haven't canceled anything, and I am still making plans. I should be fine after my surgery within a month, and the only thing I have looming after that is some hormone therapy.

First trip is not until October, life goes on. Looking forward to waking up one morning and not having breast cancer be my first thought.

 

[luvmarypoppins]

Linda and Sha

Happy Nurses week to you both!! Thanks for all your caring, kindness and compassion to those who are sick

And speaking of nursing...poor ds3 just called and said he got an e mail that he did not get into his number#1 choice of nursing programs at the univ.

So now the final decision...bsn which will be like 99K (We have paid to hold a seat for him there so far) or community cllege for the RN (he has already registered for this one and the clinicals) and then do a bridge BSN program - definetly less expensive

Linda and Sha..your thoughts???

Oh and I forgot to mention before that poor ds1 pulled his quad or hamstring playing baseball yest running to lst. He has been icing it and elevating it and taking ibuprofen. He took off work today. He is using grandmas walker, Hmm, I thought I only used that

 

[Sha]

LMP thank you!

am staying at AKL Kidani Saturday night only and plan to be in Epcot for F&G on Saturday. I invited my niece, that you met last time again. Hoping she can go. I paid to upgrade her pass at Christmas so she has an AP now. No other plans at the moment, except to see you. Where will you be that day to your best knowledge?

 

[CherylDan]

Just wanted to stop by for a quick hello.....I see we have some new members-welcome.

I've been spending all my free time lately planning our upcoming vacation, which is growing by leaps and bounds! What started out as *just* an Alaska cruise has now morphed into an all out extravaganza. After getting back in port in Seattle we are going to take a train to Portland to visit my brother and family, then we are going to fly from Portland to Los Angeles and spend 4 nights at Disneyland. And if that wasn't crazy enough, we are then going to drive down to San Diego for three nights, then finally fly home. I am so incredibly excited!!! We have never done anything like this....but it seems like this is certainly the time, seeing as I know at the end of June I will be having another CT scan and will most likely find out why my tumor markers are up. So, before jumping back on the cancer coaster AGAIN, I'm gonna have one he'll of a good time!

I don't know anything about Disneyland....I feel like I've been cramming for finals or something - only this is fun! I'd sure love any helpful hints any of you may have.....Smiley, I think you are probably the resident expert here!

Sha, MaryAnn, Laurie, know your trips are coming up soon! Anybody else?

Has anybody heard from Lisa lately? I hope she is doing ok.

Sending lots of good wishes to all in treatment and playing the waiting game.

GAGWTA!!!!!