Dis Breast Cancer Survivors Part IV - GAGWTA

[Pea-n-Me]

I think your dad deserves a cat.

 

[tigercat]

I'm not sure if this is something I can post here or not. If it isn't please let me know.
My Mum, Grandmother, Aunts, Great Grandma and Great Aunts all had breast cancer and several all had colon cancer. I just found this out. I knew about my Mum and thought that one of my Aunts had breast cancer. My Mum also had colon cancer twice.

I have 4 sisters and none of us have had cancer. I don't know about the many cousins that I have as I come from a large family and my Mum's family was also big. I had 7 siblings, my Mum had I think 6 siblings. Some of my Mums siblings had as many as 10 kids and so on.

My Dr. finally heard me when I told her that there was cancer in my extended family and has set up an appointment with a genetic counselor in Sept. They called me and wanted detailed information on all the family history of cancer. Who had it, when they had it, how old where they when they had it ect. I don't have any information at all except that I knew my Mum had it in her 50's. I am now 59 and have been okay and have had my 2nd mammogram which was clear.

My sister told me about the others that had cancer but didn't have any other information other than a lot had it. Also, one Aunt had liver cancer and my Mum died of lung cancer. My Dad had 2 brain tumors. My family doesn't like to know things and they keep things under wraps. My Mum never mentioned anything while she was alive so I was not able to get any more information.

Now the question. What does the genetic counselor do and is there enough information for them to work with? Is there any test that they do and what it is they look for?

Any information would be appreciated.

Thanks
tigercat

 

[Pea-n-Me]

Welcome, tigercat. Yes, this is a good question. Basically they assess your risk and then make recommendations that could help you avoid it in yourself. Obviously you are at high risk for cancer yourself if you have so many family members who had cancer. (It never ceases to amaze me how big a part our genetics plays in our lives.) It will be helpful to have as much detailed information as you can, but if you have more general information, that's ok too. They take a detailed family history going back three generations. Then they send you for bloodwork to test for gene sequences that they know cause cancer. Since they are still learning about these, sometimes they have you come back for more testing if new genes are discovered. Insurance generally pays for this, but if not, they let you make payments for up to two years. (At least my oncology group does, so people won't not do testing due to financial burden.) Recommendations may be as simple as getting a yearly MRI alternating with mammograms (so you have something every six months) so if something does develop, it's caught early. This is what a friend of mine does whose mother died of aggressive BC at a young age - and is the same thing I do as a survivor, for the same reason (since it can come back even after aggressive treatment and many years). I am not sure what is done about other types of cancers. And of course it's always wise to lower your risk in ways you can like living a healthy lifestyle as much as possible. Keep your immune system strong, as it is what is thought to take care of abnormal cells in our bodies early on in a mutation process. Lower your stress load as much as possible and take time to relax and enjoy life each day. (My oncology group is really big on avoiding alcohol, too.) I hope that answers your question. There is a website called www.facingyourrisk.com that you may find helpful. I was just the opposite of you in that I had almost no cancer in my family. It was sort of an eye opener going through the family history, especially on my mother's side. Good luck to you. And give Calvin a scratch for me.

 

[tigercat]

Thanks Pea. I won't have to pay for the blood work as it is covered here in Canada so that is one worry I don't have. I am gathering that if the genes that are indicative of cancer aren't there than I am probably okay right? But I do want to find out then if it skips a generation.

My one daughter and one granddaughter have said they want to know the results but the rest of my family (one other daughter and one granddaughter of age) including all my siblings don't want to know. That is one thing the lady from the clinic said I should find out so that I can make sure I only tell those who want to know.

Thanks for giving me the information. And as for Calvin..he came across a skunk on Friday and I think he wanted to be friends with it. The skunk not so much. Calvin was far enough away that he didn't get sprayed too much but oh he stunk. Actually he still stinks a little. He is a long haired cat, hard to get that stuff out of it even with special skunk stuff. I have told him to keep out of trouble for at least a week. Hopefully he takes my advice. LOL

tigercat

 

[Pea-n-Me]

Thanks Pea. I won't have to pay for the blood work as it is covered here in Canada so that is one worry I don't have. I am gathering that if the genes that are indicative of cancer aren't there than I am probably okay right? But I do want to find out then if it skips a generation.

My one daughter and one granddaughter have said they want to know the results but the rest of my family (one other daughter and one granddaughter of age) including all my siblings don't want to know. That is one thing the lady from the clinic said I should find out so that I can make sure I only tell those who want to know.

Well, that is a tough thing for anyone to answer. Not having the genes is not a guarantee there won't be cancer. As I said, my genes were negative, and my family history was considered low risk, yet I got breast cancer. If new genes are discovered, I am tested for those. I don't know if the "skipping a generation" thing is accurate. So I don't think anyone can really guarantee you won't get cancer if your testing is negative. But see what they say. When you meet with the genetic counselor that first meeting is really just informative. They give you time to think about it before going through with testing. It might be different in Canada, not sure, but here in the U.S. there is a difference betweentesting before you have cancer, and afterward. Afterward, it's already known you have/had it. Insurance issues vary accordingly. (Thankfully I already had life insurance because I was told it would be seven years before I could buy a new policy.) Whereas if you haven't had it but test positive, and somehow insurers get a hold of that information, you perhaps may have issues with insurance. I think it's worthwhile to at least meet with the counselor, then make a decision after that one way or another. I think it's pretty safe to say, given your family history, that you are pretty high risk. The question becomes, what, if anything, to do about it?

 

[tigercat]

The testing is not a problem as we don't have health insurance like you. They could do the testing at any time it won't matter. I think the last of your post has got me thinking though. I am not sure where I would go. The funny thing is my granddaughter who is 21 said that she would go for surgery no problem and no waiting. I do know that not having the gene doesn't mean that I will never get it but having it would be a warning that I have a much higher chance of getting it. I guess I will have to wait until Sept. to know. I feel better though with some more information from someone who has dealt with it. The clinic would answer my questions I am sure but I have never known what to ask for. Thanks Pea.
tigercat

 

[Pea-n-Me]

Check out that website I mentioned above. www.facingyourrisk.org

There has been some controversy about people with the gene going out and having their breasts removed right away. I was reading some articles about it. It could be overkill. But of course, everyone has the right to do what they want. It could be that early detection (with MRIs and mammograms) wouid be less invasive, disfiguring, expensive, stressful, etc. But lots to think about. (And a little OT but I find it really odd that Angelina Jolie smokes cigarettes. It makes me wonder if that she is just really OCD about BC since her mother died of ovarian cancer, which is related to BC. idk. Why wouldn't she be worried more about lung cancer??)

And oh yes, I wasn't talking about health insurance as much as I was about life insurance. Make sure you (or the young people in your family) have policies in place before testing. (If it applies in Canada.)

 

[tigercat]

Thanks pea I do have life insurance already. I am not sure what I would do if it comes out I have the gene. I figure I have time to think about it and get more information. I will check out the web site. Thanks.
tigercat

 

[smiley_face2]

Hey there Tigercat! I am in sort of the same situation. Because of the type of BC I did have, triple negative...they said I should go for genetic counciling, but like you don't know any details of my family member's cancer, other than the type and the fact they had it. Mom, both grandmothers, aunties, both sisters. Also like you, I have one daughter who wants to know, and one who does not want to know. I also have 5 grand daughters and 2 grand sons, so think it is only fair for them to know. I started filling in the forms, then got kind of stuck and who/what/when.... Also, just having been through all the treatment, I just wanted to stick my head in the sand for a while. Let me know how it goes for you, I am in BC Canada, where are you?
Peanme....good advice on the life insurance!! I had a policy in place before, but had turned down a policy from my bank, that would have paid me during my cancer treatment. I was mad at myself for missing out on that!

 

[smiley_face2]

the girls finally went home, we have a 2 or 3 week break before they come back again. I have been having some extreme back pain, I have a dr appt tomorrow, I do have some osteoarthritis in my lower spine, and a spur growing, I don't know if it's just gotten a lot worse, or if it was doing too much while the kids were here or what. we will see. I will be pushing for an MRI because the xrays just don't show enough in my opinion!
Our dollar has dropped down to under 77 cents to the US dollar, which is the worst it has been in a long time! when you factor in the fee for exchange and if you use your credit card they charge and extra 2% you are down to nearly 30 cents extra for every US dollar we need. when you look at a vacation and think of adding on 30% to everything...it really makes a difference! I am glad we bought our annual passes before the rate got so bad, but means our trip in January is going to be very different from our last trip. I will have to be looking for much more budget friendly hotels, and many less expensive dinners.

 

[tigercat]

Hello Smiley. I am from Ontario Canada. I hope you find out about your back. Back pain is a well a..pain in the back. I hear you about the dollar amount. We are going on a cruise in Jan. with a one day stop (well 2 nights and one day at Disney) and between the time of year and the dollar I think we were nuts to even thing about this. I also have fibromyalgia and Hashimotos disease so am hoping that the cancer gene is not there. We are going on this trip because we are afraid that if things are left too long I won't get to go at all because of my health.

I feel for everyone here. I saw my Mum and my sister in law go through cancer treatment and it wasn't fun. Both were and are long time survivors. There is hope.
tigercat

 

[Dancind]

Smiley are you on Tamoxifen? My doctor is a BC survivor and she is on it. Wound up with an autoimmune disease that involves the lower back that I do not remember the name of. Now she is taking meds for it that increase the risk of BC. i worry about her.

Back from Scottsdale last night, waiting for enough healing so I can take an actual shower. It wasn't too bad, except for the first procedure. And I am done with it. Now have an Onco appointment on Monday (no break for me!) and I know they will recommend Chemo, but I just can't do it. Almost died from chemical exposure about 15 years ago and still have problems from it. Chemo would quite literally kill me.

This means I have to be really, really good and get on a Ketogenic diet. Says the person who just ate a piece of leftover gluten free pizza.

Tigercat, I would imagine you don't have the gene if you are still healthy. The BRCA genes usually kick in at a younger age. But it would be good to know.

 

[Feralpeg]

Hi, all. Sorry I've been absent recently. I took a class at the local college. It kept me very busy. Class is over now, so time to catch up.

Things have been going pretty well. Had a little issue. Our cat bit me. It was a tiny bite, but was in the arm where I've had the majority of my lymph nodes removed. It became infected. I am still on a heavy dose of antibiotics, but it is much better.

Haven't had a chance to read back through recent posts yet. Hope things,are going well for each of you. Thoughts and prayers coming your way.

 

[smiley_face2]

Hey Tiger, I have fybro too, it really is hard to live with! My sis has it too. But we are both fighters!!
Diana, my cancer was triple negative, so no follow up drugs at all. It's one of the bad things about triple neg, that there isn't anything they can give you to help with prevention, and there is a much higher risk of re occurance in the first 3 years, but if you can make it past that the chances drop off to less than other types of BC. I will be 5 years from diagnosis this October, and 4 years since the end of all my treatment then too, so I am tentatively optomistic!! keeping all my fingers and toes firmly crossed! I am glad things are going well, and wish you speedy healing!! I had to skip a few of my chemo treatments because it nearly killed me. You can only do as much as you can!!
I will be going for both and xray and a CAT scan, and lot's of blood work. I hope it is something that can be treated, and not just old age, or residual problems from all the chemo and radiation.
It is a long holiday weekend here, BC day on monday. We had our "July 4th" on July 1st, this is a day to celebrate our province. Because I live in a coastal town, a very touristy area, it was crazy in the village today!! I went on a girls outting with daughter and grand daughter, had lunch, seafood chowder and a shrimp and crab sandwich, in Molly's Reach.... you can google that to see what it is walked on the waterfront and had a really nice time even with lot's of people around! really enjoying all the beautiful summer weather we have been having!
Peg....ouch!! even though I only lost a few lymph glands, I have a lot of trouble with my arm on that side! I hope you are healing well.

 

[tazdev3225]

Tiger - enjoy the cruise. I took one almost a year ago and had a blast.

Dancind hope they can do something other than chemo for you.

Feralpeg - ouch about the cat. I have 3 and they can nip pretty hard.

Smiley - Sounds like a lot but hope you get really good results.

Dad is doing OK but his kidney functions are down a bit. My mom now has to keep track of every ounce of fluid in and out of both the drain and bag. The drs need to see how well he is doing with the fluids. He sees the cardiologist this week to address the BP issues. The meds he is on are keeping his heart strong but the side effect with the other meds is low BP. Add to it my mother's gout is flaring up so she is limping along.

I had my granddaughter to the drs. yesterday for her check-up and to get the results of some blood work. She most likely has von Willebrands which is a bleeding disorder but not too dangerous, many people have it and never even know it. Her cholesterol is dangerously high. High is 130 and hers is 287. She is only going to be 11 in 2 weeks and there is a history of heart issues so I am more scared with her than I was with my dad. We now have to see a cardiologist, hematologist and a GI/nutritionist. I feel like my family is on a merry-go-round and we just can't get off of the ride. Thankfully we have one of the best children's hospitals in the country here in Philadelphia. Hope everyone has a good weekend.

 

[luvmarypoppins]

tigercat - I think the genetic counseling is a good idea. I did go to one years ago for another genetic problem with our family not cancer related.

Diana - I am glad you are healing from your surgery/procedures and wishing you all the best and that your onc. visit goes well today and you can come up with an acceptable treatment plan.

tazdev - glad to hear your dad is healing and a cat is a good idea if he is up to it.

Peg - Hope you are healing from the infection.

smiley - I am glad you are enjoying time with your dgd's even though you are exhausted

Cheryl - thinking of you and your dh. Hope he is healing too.

Laurie - if you are reading, hope things are getting settled with your mom

Tomm. I am going for a long overdue sonogram of my neck. Next its the blood tests that I need to schedule. I have been having some burning pain that shoots across my upper thigh, so I am watching that closely and will call the vascular surgeon if need be.

I got a notice to be called for the grand jury in 2 weeks and the length of service is a month!!! I had the dr. write a note so we shall see if I get excused. I did call once and they said I might have to do it for a day if at all. This would be just regular jury duty which is easy I think.

My blind aunt who fell and fractured her hip is now back in the hosp. They discovered a blood clot in her leg at the rehab center and now its broken off and in her lung. I am worried. Ds1 is going on call back interview next monday. The lst interview was 1 hr. and 45 min. and he said the guy seemed to really like him, so I am praying for sure!

Ds3 got a message from his friend about the original job he wanted on the cardiac floor. So I dont know if they could request him for that. Her husband is in charge of the floor. Ds had clinicals there and even volunteered there and likes it there but we shall see.
The one good thing is that his nursing school friend said she is in orientation there now and he will love working there so that is great for sure!!

GAGWTA

 

[luvmarypoppins]

This thread is so quiet. Hope everyone is doing well.

My sonogram seemed to be good since they didnt ask for more pictures. I didnt like the tech I had, not my normal swee tlady, plus I had a radiologist who was learning. Gotta love teaching hospitals.

Tomm. ds3 and I are going for blood tests.

My poor aunt now has MRSA and had 2 more surgeries to replace the hip they already replaced. She is not doing well at all. My heart is breaking but I am glad I can talk to her on the phone each day. Today they are also putting her dh (the one that I had the pet thread about) into a nursing home. He is going down hill fast as well.

GAGWTA.

 

[Dancind]

Smiley, do stop back and let us know how your tests go.

Peg, hope your wound is healing. I get so mad at my cat. He goes for my bad arm when I am at my desk and he wants attention.

LMP, so sorry to hear about your aunt and uncle. Hospitals are very scary places.

And I just had an awful tech too. Had to have five mammos taken before I went to AZ. Was still sore from surgery, but the tech took about five minutes to position me for each shot. I have never been pushed and pulled so much in my life! I was nearly in tears before we were done and I swear I still have some bruises. Next time, if I see her coming, I will be the "witch" that says I will wait.

Healing ok. Nice little burn area near my scar causes some pain. I'm sure it could be worse.

 

[smiley_face2]

Hey there ladies! yes it is too quiet here! I am worried about Cheryl, sent her a pm and an email with no reply, I hope things are not bad for her with her husband so badly hurt
I get my xrays and blood work tomorrow, cat scan in another 3 weeks. back is doing a bit better, but I have to be soooo careful! reaching up to a shelf, or sitting down, turning from the waist can be like a knife! been having a lot of esophageal spasms too, been taking a lot of dilaudid which makes me so tired. Hubby's dad ended up in the hospital too, internal bleeding, he was not coping very well with the loss of his wife he is doing better, waiting to hear results from some tests he had done.
Diana, you have every right to not be a guinea pig for them every time!! you did your duty last time, now you need to ask for the experts to avoid more pain!!! this is all hard enough without having more added that doesn't need to be!! I have started planning for our trip in January/February again. our annual passes expire on Feb 1 so we need to go a little earlier this year. I found a really nice place in Pismo Beach we might choose, right on the beach, we want to drive our jeep on the beach there!! lol!!... Hotels around Disneyland have reallllly jacked up their prices because of the 60th anniversary at DL. I will wait and make some phone calls in November I think, it is so quiet there in January, surely they will lower their prices then.
LMP, I am so sorry about your aunt and uncle! that is so sad when that happens, it was like that with my mom and dad, she only lived for 4 years after he went. She just seemed to lose her heart
Did you get out of jury duty or do you know yet?
Taz...!! I hope your grand daughter is ok! that sounds so scarey!

 

[Elmo9607]

Hello everyone, I've never posted in this thread before but I have very sad news to report. I am Cheryl's daughter. She passed away last night in the ICU unit in the hospital. I don't really know what to say other than she was surrounded by our family the entire time she was there. I'm so sorry that you'll no longer have her here to talk to, I read her posts she made in this page quite often and I know how much she cared about you guys here.

You all offered her a kind of support and comfort that her family couldn't. I would like to thank all of you for helping her with her trip ideas and thank you for always being there for her and being so concerned about her and her family's well being. Zoe got to visit her in the hospital a couple days ago, (my sister snuck her in!!) and she also got to see the doggies.

We are all doing as well as we can...this is very hard and I don't think everything has quite set in yet. We are all close so we have each other for support. I really wish you all could have known her personally...you guys are all strong women but Mom was so wonderful. I miss her so!!!