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Would appreciate some advice

humility
Posts: 2
Joined: Apr 2002

Hi to everyone. This is my first message here - I'm looking for some personal advice. Medics never seem to have any answers.... My mum has recently had a bi-lateral mastectomy (radical) after being diagnosed with breast cancer for the 2nd time before menopause. We've been told that we probably have the BRCA1 gene mutation in our family and are currently undergoing the tests to identify if that is the case. There's so many questions I have, I don't know where to begin. Does anyone else here have the gene mutation??? My mum has been to hell and back recently and is just starting to deal with the loss of her breasts. She may consider reconstruction at some point, but we can't seem to find any solid info about what's involved, is it worth it?, what they look like afterwards, etc. Basically, it would be good to hear from women who have been through what my mum is going through now. She first had bc at aged 40, but it was a completely different scenario then to this time around. Like I said, she's been through so much. The chemo was horrendous, it was terrible to see her so ill. Would love to hear from anyone who can offer some advice. Thanks.

maud
Posts: 183
Joined: Nov 2001

Hi, Welcome to this site.I had breast cancer and then lost my sister to breast cancer as she never went to the Drs. so it had spread to her bones and lungs.So my Dr. suggested I have the genetic testing done.I had the blood work done and was found not to have that particular gene but I was informed that they do not test for everything so it is possible for me to have a recurrence. However I have a sister who was a twin to my sister I lost and she should have the test also but hasn't.It sounds like you are all being tested which is good. If I can be of any help you can email me here or at maudsemills@aol.com.I will be praying for you and your family and let me know how you make out. God Bless
Debbie

shirlann
Posts: 235
Joined: Oct 2001

Hi, dear, go buy Dr. Susan Love's Breast Book. You can get it on line at Amazon.com or Borders.com. You will get a lot of information that will help. AFTER you get a diagnosis of the BRCA1 gene, (very rare), get on the internet and find out where the leading edge work is being done in this area of breast cancer. Don't rely on the locals. There are wonderful clinics out there that specialize in particular cancers, you need to be in contact with one of them. I went to UCLA, they have a clinic that allows you to send your mammo's, slides, etc., all ahead (avoiding having all this re-done), and then after 2 weeks in which they review all the info, including redoing your slides with a pathologist who does ONLY breast cancer, you come for one day and are seen by a radiologist, an oncologist, a surgeon, a psychologist and a personal physician assigned to you. This cost us $125. If you have more work to be done, of course it would be more. I highly recommend this course of action. You can get all your original mammo's and slides with a written authorization or you can use a service you can find in the yellow pages. This has been a godsend for me. A REAL second opinion. UCLA is not the only place that does this, these clinics are in many places. You just need to do your homework and find out where the BEST is for your particular situation. Also, another piece of advice, buy a small cheap tape recorder and tape all the visits so you don't have to try and remember what is said. That saved us many times. Good luck on your journey. God bless you all and keep you safe in his arms. Hugs and kisses from your sisters. Shirlann

pjsnana
Posts: 8
Joined: Apr 2002

Hi - I don't have the gene mutation, but I did have reconstruction, so here is a nice website that explains things in plain english. Go to mayoclinic.com and find the section on health decisions. Select early breast cancer and keep paging through the whole thing. It will take you an hour or so. It describes the different types of reconstruction and has illustrations. Another great reference is a book called Show Me, which you can obtain for a $25 (US)donation. It contains photos and stories of women in a breast cancer support group who had different types of surgeries. Go to www.pennstatewomenshealth.com/showme for more info. Reconstruction is a personal issue, so whether it is "worth it" or not depends on the individual. It was definitely worth it for me. Judy

humility
Posts: 2
Joined: Apr 2002

Thanks to all who replied - for your support and the info. That website (mayoclinic.com) is a fantastic resource - I'll keep going back. I've found loads of info on the net about the BRCA genes. Also good advice to wait for the results before panicking! Thanks again.

dewbear
Posts: 7
Joined: Apr 2002

hi,

i'm sorry that i don't have personal experience with the mastectomy surgery or the brca1 gene, but my prayers are with your mom and your family. i did have chemo and know what that is like, so i can empathize with your mom in that manner. i'm 30 years old and was just diagnosed in november 2001. i had a lumpectomy,chemo and now radiation. my siter-in-law has had a mastectomy on the right side about 7 years ago and is now considering reconstruction. she's been wearing a prosthetic. i can see if she has any information on this for you and let you know. again, i wish i could give more advice, but my experience is a lot different than your mom's. still, we are both survivors and that's special. tell her i wish her the best and my thoughts and prayers are with her. oh, by the way, what is the brca1 gene? i haven't heard that term yet. take care a talk you ya soon.

megan

palofkids
Posts: 6
Joined: Apr 2002

hi i have the barc1 gene and so does my sister i am a survior of ovarian and newly diagnose with breast cancer. i donot know what you would like to know but please feel free to ask me

aandries
Posts: 2
Joined: Apr 2002

Hi! My name is Allison and I have had breast cancer and a bi-lateral mastectomy. I have also had a bone marrow transplant. I've been cancer free for almost 5 years. I'd be happy to talk to you and try to answer any questions you might have regarding your Mum. Take care and I look forward to hearing from you soon!
Allison "aandries1223@aol.com"

shellrae
Posts: 5
Joined: Mar 2002

Hi, I would like to share some stats. with you. My maternal grandmonther died of cancer, I have 6 sisters, and two of us have breast cancer, my maternal aunt died of breast cancer, and I have two cousins with breast cancer. So you would think that our family would be a "slam dunk" for the mutated gene. oddly enought we have been tested, and we do not. (so we ask... what is in the water) but my point is two fold. It is not all what it appears, and you should really prepare and get counceling so you are aware of what you would like to do with this information once you have it. Either way the answer can be life changing. I wish you the best. My sister did proceed with a bilateral Mast. she did do the reconstruction. she looks great. she feels good too. she is 52. I am 37. My sister and I went through treatment just two weeks apart. We could encourage each other. I also went through reconstruction, but I just had a lumpectomy. We are both doing well. I will say a pray for you and your family. Knowledge is power. read and teach yourself everything you can..

:) shellrae

bullfrog13's picture
bullfrog13
Posts: 216
Joined: Apr 2002

dear Humilty
Been there done that.. was 43.. still on chemo.. have 19 more treatments.. email me or icq me.@. 13842303 we can talk all you need to

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