I've been told I need Genetic Counselling, Scared!
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I saw my rad onc yesterday and was very specific in my questions. I asked him about the 5-Fu genetics test that was completed on me last Nov., and he said they didn't send you a letter I said no what did it say. So he looked through my file, read a bit , closed the file and changed conversation. Then I said to him I'm really upset that I did not get my pathology report from my surgury, I only received the pathology report on the biospy so again he turned to my file and read a bit then said lets do your exam, so he checked my breasts and then said when was your last mammogram, I told him it was a year and half ago, so he said he would book me right away for one.
Then he told me honestly that I didn't look good, and I said finally honesty here and I told him I feel like SHIT, and I'm tired of it. So then he said how would you feel about Genetic Counselling and said it would be good for my children and of course I agreed. So I have a standing two week appointment, but I never did get my answers and I'm wondering if he's waiting for a counsellor to tell me whats in my file, he looked and acted nervous. My appointment was for three I waited an hour and half to see him and it was my second appt that afternoon so I was exhausted my back hurt extremely back couldn't sit or stand so I didn't push for the copies but I don't understand what Genetic Counselling means or why I would need it. I'm pretty sure my results are not good but why couldn't he just tell me has anyone gone through this. Another thing I have been having headaches really bad but didn't realize it's been so long when I had my appointment yesterday they pointed out that I have been complaining about them now since January how the heck could I have ignored that I just kept taking a few Ibuprofen. So I know now I will be in for a round of scans but I just want to know what is going on with my body and have a plan of attack. Oh I'm so babbling, sorry, everyone. Oh yeah and I found out I have to book with an optometrist because of the floaters and I saw a bright light when I closed my eys to go to sleep. So my back Dr. said she was having floaters and warned me not to mess with the bright light explained what they told her and said to get in right away which I will.
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Pearl - this sucks!! Nothing like feeling horrible and having someone not answer your questions and then there is that waiting game!!!
What about calling your oncologist and speaking with him/her - speak to a nurse to push the phone call? Who usually sends you for scans? Do you have a regular physician that you could call for info? Seems like EVERYONE that I've ever seen gets copies of my tests.
I had the BRAC test (whatever the letters are) way back in summer 06 and the results were back in a couple weeks; my oncologist called me with the results and that was it.................. I believe the counselor just goes over your family history etc to see if the test is warranted and then over the results and any recommendations. Not sure if it's different where you are.
I'm sure someone more knowledgeable will be along soon, but I would be on the phone being insistent!!
Big hugs! Let us know what's going on - you KNOW we're all in your corner!!
Dawn
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Thanks Dawn: I've tried, called, complained nicely then not so nicely, no luck. Whats sort of strange is that even my Back Dr. (angel doc.) held back a copy. So I guess I will have to wait and hope for the best. This cancer stinks so bad, I'm sick of it. I have to remember what ever I do or what ever tests I have will help my children and their children, so I have decided to be a good little girl Wait for my counselling do the tests and scans and hope for the best. Still scared as all heck though.
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Hi Pearl,
Was there a specific test which you were waiting the result on which your radiation oncologist might have told you at your visit?
Has there been discussion of future use of 5 FU so the enzyme test ordered and done? Or was this already given and you are curious about the result.
Genetic testing: I don't know why he brought this up now at this visit. I mean, we all worry our breast cancers may be passed to our kids, and just this week there was a new gene variant found on chromosome 5 associated with ER+ cancer. So it's always evolving. With triple negative, or basal breast cancers, it's BRCA-1 that is found the majority of the time, IF you carry it. I thought you had your ovaries out, but if not, this might be discussed.
If I might ask, where are you know on the Herceptin infusions? Are you getting your care between two oncology centers now?
I know you're very tired, so please don't push to respond.
Just wanted to let you know I'm thinking of you. Glad you like your new apartment, Pearl.Tender
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Hi Tender, thank you I was hoping you would post for me. I'm not getting herceptim, I'm not getting anything. What does it do or triple negs and apparantly they didn't even test me for Brac 1 or 2 I asked the rad onc and he told me I had to ask them to do the test! Crickey who even knows to ask for that right away, I sure didn't. I don't know why no one will show me the surgical path report or why I didn't get the letter on the 5FU study. But when I looked up se's I had just about everyone but by then it was to late I was finishing up the Docetaxols. I am tired but so curious I can't rest. My rad onc has now booked for two week appointments and I can't miss any for some reason. So much to wonder about but at least now they are doing the tests that should have been done, the ones my Angel Doc has been trying to get for me. I'm happy that she doesn't have that burden now and we can concentrate on my back and work on making sure I'm healthy enough for the implant for pain that should be in a few months, and I'm crossing my fingers that nothing will prevent that. I saw a posting from Otter and she explained a path report really well so well that i could even understand it, so I hope I get it in two weeks so I can review what she wrote and ask any questions that I might need to know as well. I just don't get all the secrecy and I'm sort of angry with myself for being to tired to demand the copies yesterday. Maybe I will go in tomorrow and just ask for them they wouldn't help me by phone but if I sit there and tell the receptionist that I'm going to wait all day if I have to and tell anyone who will listen to maybe they will give them to me and just get me out of there. Two weeks is a long wait and even though I know better imagination can be worse than reality. Thanks Tender for your post they really calm me. Big FAT hugs to you!
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I'm sorry. I didn't mean herceptin, but chemotherapy infusions, but that may all be decided after your scans. I am glad you are hooked into the system better (blessings to your Angeldoctor, may we all have one
) and that's probably why your being seen every two weeks, for continuity reasons and focus on your back and pain relief.It seems things are a bit better for you now, and I'm truly glad for this. You had quite a time there.
I do forget to get my reports too: it's almost like you feel strange asking for them but you know you should for a number of reasons.
Hope you'll post again soon.
Tender
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Snowday I sure hope you get your results. From what I read I think most people that get herceptim are her2+. The BRAC test is just a blood test which after taking blood they usually check to make sure the insurance will cover it because it cost about $3200. Than they called me to make sure I was willing to pay the 20% after that I think it takes about 10 days to get results. Mine was negative, it helped me decide to keep my good breast and ovaries.
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Snowy~
I am sorry for your frustrations...I was asked to have a BRCA testing as well, so if they asked me I surprised this wasn't brought up initially with you!?
Excuse me if I am prodding..but why did you have a mamo a year and a half ago ? Shouldn't you be getting one at least every six months !???
I am sure you were trying to read into him Snowy, and sometimes you may be getting ahead of yourself, at least he sounds pro-active. Whats with the not getting the path report from surgery ( I didn't either.) I had to ask for my medical records. Whats with that ?!
ITS EVERYTHING TO DO WITH US thats why!...they were even wondering why! HELLO!
So, it may not be what you are reading into. You have a plan and you will get on the right path again!
A breast cancer (BRCA) gene test is a blood test to check for specific changes (mutations) in genes that help control normal cell growth. Finding changes in these genes, called BRCA1 and BRCA2, can help determine your chance of developing breast cancer and ovarian cancer. A BRCA gene test does not test for cancer itself. This test is only done for people with a strong family history of breast cancer or ovarian cancer, and sometimes for those who already have one of these diseases. Genetic counseling before and after a BRCA test is very important to help you understand the benefits, risks, and possible outcomes of the test.
A woman's risk of breast or ovarian cancer is higher if she has BRCA1 or BRCA2 gene changes. Breast cancer is extremely rare in men but BRCA2 gene changes have been linked to male breast cancer and possibly prostate cancer. The risk of some other cancers, including pancreatic and colon cancer, may also be higher.1 The gene changes can be inherited from either your mother's or father's side of the family.
Certain people have a higher chance of inheriting BRCA1 or BRCA2 gene changes.
- Jewish women are more likely to be BRCA gene carriers. Some experts recommend gene tests for women who are Ashkenazi Jews (Jews whose ancestors came from Eastern Europe) if they have one or both of the following:2
- Any first-degree relative with breast or ovarian cancer. First-degree relatives are parents, sisters and brothers, and children.
- Two second-degree relatives on the same side of the family with breast or ovarian cancer. Second-degree relatives are aunts and uncles, nieces and nephews, and grandparents.
- If you are not Jewish, some experts recommend a gene test if you have one or more of the following:2
- Two first-degree relatives with breast cancer, one of whom was diagnosed before age 50
- Three or more first- or second-degree relatives with breast cancer, diagnosed at any age
- Both breast and ovarian cancer in the family
- A first-degree relative with cancer in both breasts
- Two or more relatives with ovarian cancer
- One relative with both breast and ovarian cancer
- A male relative with breast cancer
Much LUV ~
- Jewish women are more likely to be BRCA gene carriers. Some experts recommend gene tests for women who are Ashkenazi Jews (Jews whose ancestors came from Eastern Europe) if they have one or both of the following:2
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Pearl, once you get your path report, if you post it here, there will be a whole posse of people waiting to help translate it. I see a line forming already....
I, too, can't imagine why the question of genetic counseling is suddenly being raised. Don't fret too much about it, though. My surgeon heard my family hx of breast cancer, which I thought was pretty mundane; and she scheduled a meeting for me with a genetics counselor. They were backed up for 2+ months, so I didn't get to meet with the counselor until long after my mast/SNB was healed. Still, I'm glad I had the meeting, because the counselor had sent me a form ahead of time and had entered all my family data into a computer program. She gave me some numbers that predicted the likelihood my BC was associated with a mutation in the BRCA1 or BRCA2 genes. Then she explained all the stuff about heritability of BC and other cancers, and genetic risk factors, etc. etc.
According to her figures, the risk that my BC was BRAC-related was pretty low--5% or less. I figured my insurance company (work-related group policy in the U.S.) would not cover the cost of BRCA testing. My surgeon said they wouldn't cover it unless the probability was greater than 10% that I had a mutation. My insurance did pay, though--they covered the whole thing, which ended up being nearly $3,000 (the negotiated charge for a client in my group plan). There was no cost to me, for either the test or the genetics consult, except for my usual $20 office visit co-pay.
I got a phone call exactly 2 weeks later--the lab (Myriad) found no mutations or known rearrangements in either the BRCA1 or BRCA2 genes. In retrospect, and since my insurance paid for the consult and the testing, I'm glad I did it. Now my sister, who is worried sick that she will get BC, doesn't have to worry quite so much. And my cousins have about the same risk I thought I had last fall, before all this began.
Do you know if your genetics counselor is an M.D.? Mine wasn't--I think she had a master's degree and was certified, but she could not have discussed my medical file or interpreted my other test results. I wonder why your other docs (not your Angel Doc) are being such pins about disclosing things to you. That's the reason why I fired my first onco--he would not talk to me about anything ahead of time, and he would not listen to me. That's not how this is supposed to work in 2008.
You have been through so much, and this is just one more thing. We're all lined up here to catch you, so don't be scared.
otter (sending BIG hugs your way) {{{{{Pearl}}}}}
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Snowy ~
Like otter said...I just got my paper work yesterday to fill out prior. Perhaps your Dr. is covering all necessary measures. Don't think this is just in your case. ((gentle hugs)) I pray for your comfort and get plenty of rest...try not to stress yourself too much.
Much LUV
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Pearl,
I think you should be more proactive. You are entitled to get copies of all your reports and shouldn't have to wait to "hear" from your doctor. If I were you, I would march back in there and ask for copies of all the reports that you want. Also, there is only one company in the US that does gene testing - you could call them directly (I have) and speak to a customer service rep. They could probably give the results of that test. The name is Myriad.
Good luck and don't let those doctors jerk you around. It's better to be informed so you know what your options are.
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Pearl,
Did you doctor say where you will be going for your genetics test? Not all hospitals do genetic counselling and testing. I had my treatment at PMH but was sent to Mt. Sinai for genetic testing. Before my appointment, they sent me a very long questionnaire to fill out, detailing my family health history. When I went for the appointment, the counsellor had reviewed the information I'd provided, explained that while I was relatively low risk to be carrying the BRCA genetic mutation, there was enough risk to warrant the test. She then explained what the test results would mean for me and for family members, if it was negative and if it was positive. Then she left it to me to decide if I wanted to go ahead. I did, so I had the blood test on the spot.
In Canada, cost is not an issue - if you are sent for the genetic testing by your doctor, then it will be paid for by OHIP. The issue is the amount of time it takes to get the results. There's a huge backlog on testing so the results can take up to 4 months, or even longer. I didn't have a problem with this, since I'd already had my mastectomy and had no intention of jumping into action if the results were positive (i.e. have a prophylactic mastectomy of my other breast and have an OOPH). But if you do want to get the results faster, for a fee, you can have your test fast-tracked to Myriad in ths States. If I recall, the cost at the time I had my test (about 2 years ago) was $250. If you do this, you'll get your results within about 30 days.
Despite having some risk from both sides of my family, thankfully my results were negative. I suspect that your doctor suggested genetic counselling as a "just in case" measure because you met a couple of the criteria (see LUVmy2girlZ's note). Most BC is not genetic, but for those who do have genetic BC, the implications can be significant. And there is a risk that siblings and children might also be affected, which could be important to know.
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Hello Every Single Wonderful Women that answered my questions, you all made me feel much more confident. My genetic questionairre will be ridiculously short on answers. My mother is Jewish, was hidden during the war the rest of her family is either dead or unkown wherabouts. I heard we had relatives in Isreal by the name of Berger, but it's a common Jewish name, I've tried to find someone anyone in my family tree but it's impossible. My real father died when my mother was eight months pregnant with me. A kidney disease that killed him in three months that was back in 57, so no (blank) you know filtering the blood for him. So sad for my mother. And the rest of his family is passed away, on my father's side he was German, Bavarian, but had spanish blood alot of by the look of his pictures. So that is all I can answer except my sisters and brother and so far I'm the only one with cancer. So testing would be great. My son had a rare type of tumour when he was 10 it was the size of a football, and it grew since he was born. I was always taking him to our clinic for a cough or the way he chewed or little tummy aches and they never found a thing. Then one night Christmas Eve he fell out of his bed on purpose hoping that with an ouchy I would let him open another gift. But what it did was move the tumour and he couldn't swallow. So at first they thought it was the size of a cantaloupe and so we had to go to Health Sciences in Winnipeg and when we got there they had about 12 Drs. lined up ready for us, it was shocking. I became the ice queen and all business while my ex did all the crying and phoning people. Well at first they thought it was cancer and we had to wait from the 27th to Jan 3. the holidays before they tested him. It wasn't anything they have ever seen before and the results went to Bethesda the army hospital for a radiology conference. So the football sized tumour he had was thick as the bark of a tree had 1400 cc's of clear fluid in it and they removed it making a spleen sandwich because it started in the spleen and kept growing. It wasn't cancer they said but we had to go for Pet Scans for three years after every six months to make sure they got all the cells or they said it would grow back. So that the history I can give them. Not much huh. Newbie your right I'm going to the clinic today to try and get my copies, wish me luck.
Beesie, thank you as well for answering between you Otter and Tender I always feel covered. And luvmygirls you are just great and I can't wait to get to our story and have some fun thanks for letting me know your'e there it means alot. I feel human today which is nice. But my mother is visiting which is not so nice as I always have to look pretty or she gets scared so off I go to dress up for mummy.
Thanks all of you and if I missed someone I didn't mean to.
xxxxxPearl (new) neat huh!
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I'm so sorry you are going through this, Pearl. It makes my heart break just reading what you have gone through.
I think board certified genetic counselors are trained to handle the uncertainties of a truncated family tree.
Finding information from families can be really a mind trip. I had a horrid time trying to find out when my grandmother got bc. She had only sons and no daughters, so the sons weren't interested at all in that info.
I got counseling but opted not to get tested. I found it very supportive. I thought they were very thorough because they said there was a possibility I had a mutation in a PTEN gene where there have only been about 200 cases worldwide ever diagnosed! (I didn't opt to get tested for that either.)
This study says that families with a truncated family tree need to incorporate this uncertainty in the decision. http://www.ncbi.nlm.nih.gov/pubmed/17579227?ordinalpos=1&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVDocSum
http://www.guideline.gov/summary/summary.aspx?doc_id=7784&nbr=004489&string=BRCA+AND+testing
Please know we are all thinking of you and hoping for the best in this very stressful time! -
Thank you leaf, I think I will go for any testing because I have to think of my children and future grandchildren and sisters. Having a truncated family tree is a pain but need to know. What is a PTEN gene it must be scary. I know the counselling will help but I am scared but can't live with not knowing just the way I am. I feel better knowing that way I can try and live a healthier way and just see what happens. I will look up your links thank you, leaf.
Have to watch Ugly Betty now always makes me laugh and forget my worries. Have a good night all. I'm praying for each and every one of us on this board.
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Because my brother has had thryoid cancer and my mum & I have had BC, I was told that I was at risk for PTEN too. It's very rare, and as I looked at the details of PTEN, I concluded that it's unlikely that I had it, and even if I did, having already been diagnosed with BC, there were no other significant risks that I faced. So I decided to pass on further testing.
Here's some info on it:
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I think its a great idea to get genetic counseling and testing.
What was strange for me about the PTEN was that, if you count LCIS as breast cancer, I would fulfill all of the symptom criteria for a PTEN mutation. On a subsequent biopsy, I asked specifically if the pathologist would address the question if any hamartomas were seen (PTEN, or Cowden's syndrome is also known as a hamartoma syndrome.) They said there were no hamartomas seen.
The genetics counselor I had quite good skills at emotional counseling as well as the info about genetics, which she explained quite well.
Please know we are all thinking of you and crossing all our fingers (and toes, and eyes) for you. -
I am currently waiting for genetic results for the p53 gene. I had a daughter that died from cancer (rhabdomyosarcoma) when she was 16 and it is known to be caused by mutations of this gene. My mother and I both have bc. I live just outside of Toronto and am being tested by Sick Children's Hosp through Sunnybrook Cancer Centre. They have told me the results will take 4-6 weeks.
I don't think the results will change things too much for me, but of course I hope they are negative for my sons' sake. They can chose to be tested if they want should the results be positive.
My main reason for being tested was to contribute to the ever increasing gene studies being done in relation to all cancers. I really believe that at least the majority, if not all, cancer is related to some problem with some gene. It is just that presently we have only identified a few of them. In years to come I expect that treatment will be tailored to the specific gene that is responsible.
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