Any advice welcome

For those with a High Risk of Breast Cancer -BRCA1 and BRCA2 Genes, Family History, LCIS
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Tracey Gibney
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Re: Any advice welcome

Postby Tracey Gibney » Thu Mar 06, 2014 11:27 pm

Rachel I saw the familial cancer centre in Melbourne with a referral from my GP I was considered eligible for testing because of my young age at diagnosis 34 and the fact my second cousin was also under 40. My cousin wasn't interested in being tested as she had brothers and no children. So I don't think they need to compare tests. In Melbourne I waited 6 months for the results as a public patient. They also gave me the option of paying I think it was about a thousand dollars for quicker results which I declined as I was really doing it for information for my daughter. I was negative for the BRCA genes. Even if you are negative don't be surprised if they say that you may have a gene as yet not discovered especially with your family history.
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EBC 94 aged 34. Mastectomy CMF, tamoxifen. Mets 07 brachial plexus, supra clavicular node, sternum. Treated with AI's Rads x3 Ooph 09. 2014 met to chest wall,surg, rads. 12/14 Multiple bone mets, rt axillary nodes further recurrence chest wall. Failed on Faslodex. 8/15 Ibrance

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Re: Any advice welcome

Postby ruth1 » Thu Mar 06, 2014 1:22 pm

Rachel you have no cause to feel silly. Breast lumps are serious stuff and you should never feel silly trying to find out what to do especially as you have had conflicting opinions. I hope you get to see the next Breast Surgeon quickly as you need to be thoroughly certain that the pea lump isn't sinister. Do let us know how you go with that. Seeing the familial cancer centre will also help you a lot. Good luck with it all.
Dx IDC 2cm grade 3 ER/PR pos. DCIS grade 3, fam hist metastatic BC. Bi lat mastectomy, FEC x 4, surgical revision pending. AI x 5 yrs Femara

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Re: Any advice welcome

Postby Rachel » Thu Mar 06, 2014 12:46 pm

Hello Ladies

Thank you so much for your kind replies. When I see what you have all gone through I feel a bit silly for complaining about my lot.

My GP is organising a referral for me to another Breast Specialist here in Perth. Hopefully he may be able to help me further.

I am also going to arrange an appointment at the Breast Cancer Care Centre (Thank you for that link Janette). I am sure that they will be able to clear up my confusion with the genetic testing situation.

I have to say that everyone here is so inspiring! You are all brilliant!

Thank you all so much for taking the time to read my lengthy post and share your advice. It is greatly appreciated.

Take Care xoxoxo

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Re: Any advice welcome

Postby chrismelb » Sat Mar 01, 2014 3:40 pm

You don't need someone to test 'against' just family members who have had it. Maybe because not your immediate mother or sister?? I only just got it as my mother was 52 at diagnosis and I would have had my tumor before 40. They also test cases that they might find interesting.
I'm surprised they won't give u double mastectomy tho due to history and all the trouble you've had. If u went privately you could insist. Good luck.
Dx 9/03 EBC
5/12 ABC bones-Herceptin,Tamox&Zometa
8/12 Liver mets-Abraxane,Herceptin&Zometa
6/13 Xeloda/Tykerb Xgeva
11/14 TDM1 Xgeva
1/15 Rads to tumour in head
2/16 Whole brain rads lepto. mets, continue TDM1
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Re: Any advice welcome

Postby schoolteacher » Sat Mar 01, 2014 2:47 pm

I would definitely be seeking an opinion elsewhere. This is your body. You should not have to live with discomfort and fear. I get so cross when women are not treated with respect and their wishes taken seriously. No one requests double mastectomies lightly.
I hope you can find someone who gives you more empathy and understanding

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Re: Any advice welcome

Postby The new girl » Thu Feb 27, 2014 10:21 pm

:wave: hi Rachel,so sorry to hear about your on going problems ,I think you need a second opinion,given your family history you would think a masectomy is the way to go and the to stop the ongoing testing each time you find a new lump :hugs: hoe you get some answers soon,pease keep in touch.....Rosa

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Re: Any advice welcome

Postby jezza » Thu Feb 27, 2014 9:01 pm

Gosh Rachael...you don't sound like you have been treated well at all.

My niece (not blood relation...on my husband's side) has an appointment in Melbourne to discuss/have genetic testing. Her GP suggested it and gave her a referral.

Her mother (my husband's sister) had breast cancer and died of ovarian cancer.

She is an only daughter and her mother was an only daughter ...grandmother long gone so there is no chance of getting another female family member tested. She has a very young daughter so feels that she is doing the right thing by her. So this seems to go against what you have been told.

My mum had Bc and some months after I was diagnosed I opted to have a second preventative mastectomy so I can totally understand how you are feeling ...

So confusing for you.

jezza
Dx Jan. 1992 9mm Grade 3 IDC node neg. LB mast. Prophylactic RB mast. 6 months later. No chemo. No rads. Saline implants. 22 years NED. (No Evidence of Disease)

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Re: Any advice welcome

Postby Janette » Thu Feb 27, 2014 8:29 pm

Hi Rachel and welcome.

I can't help with the genetic testing criteria at all I'm sorry.

In Perth, you have Breast Cancer Care, link below that might be helpful, they are a wonderful resource for those in WA. Also I will give you a link to the Breast Cancer Click, who run chat sessions with a breast care nurse. Great resources.

http://www.breastcancer.org.au/
http://www.breastcancerclick.com.au/

I had fibro cystic disease and at times it was painful even to walk, so I can understand your discomfort. Your feeling or fear that something is brewing is totally understandable as well. I hope you can get some help to move forward very soon without living with fear and discomfort. Please let us know how you go. :hugs:
Janette


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Re: Any advice welcome

Postby JudyB » Thu Feb 27, 2014 8:19 pm

Hi Rachel, I'm sorry to hear of your problems, this question is one that I have always wondered too. People talk like anyone can have the test if they are willing to pay but I remember one our members who didn't want to have it but felt she should so that others in her family could have it done. She said that she was told that you needed to either have breast cancer or have someone in the family who had been tested positive for the gene.

It was Luv My Lab who was deciding whether she would have it or not.
DX Sep 09, LB mast with axillary diss. Grd 2 Ductal Carc. 50mm diam. Margins clear. 1/13 nodes. OR+ PR+, HER2- . FEC x 3, Taxotere x 3, RADS x 30, Tamoxifen, DIEP reconstruction April 2011, Femara 2013, Oophorectomy 2013.

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Re: Any advice welcome

Postby ruth1 » Thu Feb 27, 2014 7:24 pm

Rachel this all sounds terrible for you. I can totally understand why you are so stressed. I have had a double mastectomy because I do have cancer and my Mother died at 52. I saw a Counsellor and a Familial Cancer Specialist Dr at the Familial Cancer Centre after the op and chemo. I did have the testing and the criteria that was relevant was my Mother's age when she got cancer - she was early 40's. If you have family members who have got or had breast cancer but they were or are younger than 50 then that would count. I think there is criteria that they look at because testing on the public system is too expensive to give out. You could have it done if you pay and you don't need another gene to test against as far as I know but you need to check that properly at the Familial Cancer Centre.

If I was you I would be seeing a couple of specialist breast surgeons to get opinions now about preventative mastectomies. You are in a difficult position with all this conflicting info. I think another Oncology opinion would be good too. Also, why not make an appointment to see a Counsellor at the Familial Cancer Centre at the hospital as I found them to be wonderful. Its a complex business and I didn't realize how much until I went there.

I wish you all the best and its good you are having the strange pea lump checked - let us know how you go. :hugs: Ruth
Dx IDC 2cm grade 3 ER/PR pos. DCIS grade 3, fam hist metastatic BC. Bi lat mastectomy, FEC x 4, surgical revision pending. AI x 5 yrs Femara

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Any advice welcome

Postby Rachel » Thu Feb 27, 2014 6:10 pm

Hello
I have spent some time reading these forums and it is obvious there is a wealth of knowledge here. I am hoping that perhaps someone here may be able to offer me some advice regarding my situation as I am at my wits end with no idea where to turn right now.

I am 43 years old and since I was 19 I have had breast cysts continuously, numbering up to around 100 at one time, between both breasts. Over the past 5 years I have had numerous breast tumours diagnosed and some removed. At this stage the tumours that were removed were benign.I still have 8 (at last count) tumours that have not been removed or tested. I have been told by the consultant at the hospital that they "look" benign which is why they are not removing them. Apparently they are in difficult places to get to, to enable any testing.

I have discovered a new pea size tumour since my last ultrasound a month ago. During that ultrasound a large cyst was aspirated for the 2nd time to no avail. It has since refilled again. This morning I awoke to find a strange looking redness around one nipple. It almost looks bruised. Of course I have an appointment with the GP tomorrow to get that checked.

My family history with breast cancer is not a good story. My grandmother died from cancer at the age of 54. She had a brain tumour which was secondary to the primary breast cancer. An aunt (daughter of my above mentioned gran) is currently terminal. She also has primary breast cancer which has spread into her brain, and now everywhere else throughout her body. She has been fighting for many years thanks to drugs like Herceptin but the end is now close for her.

A 27yr old cousin (same side of the family) was diagnosed with breast cancer last year and she has recently had tumours removed from her brain which were secondary cancers. All were malignant.

I have asked about genetic testing for myself. Unfortunately I have not been able to make contact with my other family members to see if they have been tested for the gene, although I am still trying to track them down. I have been told by the consultant at the hospital that unless I can provide another family member to be tested, I cannot be tested.

Yet everything I read about the testing tells me that they do not need to have another family member's gene to test against. I am quite confused about this conflicting information.

I have even consulted with an Oncologist here in Perth. He is one of Perth’s top Oncologists who is highly regarded in his field. He reviewed all of my results, considered my history and my family history, and advised me to strongly consider a preventative double mastectomy. He also wrote to RPH to advise them of his opinion.

I have repeatedly requested a double mastectomy. I have been in pain for over 2 decades just with the cyst problem alone. Now I feel like I have two ticking time bombs on my chest. I cannot even hug people as my breasts are permanently swollen, red and sore.

The consultant tells me that my family history is only "slightly moderate" but everything I read tells me that my family history falls into the "serious" category. I am terrified of becoming like my other family members which is why I just want my breasts removed. I have had over 2 decades of this so I have not come to a hasty decision about it.

I am getting nowhere with the consultant at the hospital. Despite many tests and all of this evidence, I continue to be on the RPH merry-go-round where nothing much is getting done. Every time I have an ultrasound at RPH, they remark on how complex my breasts are and I have been handballed from doctor to doctor. Every bit of info that I have read indicates that I am a perfect candidate for the surgery but for some reason the consultant does not agree. I have to admit that I have lost all faith in RPH. It seems that they are not really keen on the preventative surgery at all.

Do any of you here know for sure if a person can be tested for the gene without another family member's gene to compare? From what I am reading it IS possible. Can anybody please clarify this point?Can anyone recommend anybody that I can talk to about this issue as I just don’t know where to turn now? I really don't want to wait til I get full blown cancer before the doctors will help me. I don't want to end up like my relatives.

Thank you for taking the time to read this.
Rachel


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