Recurrence Anxiety |
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Alyson 
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Joined: Mar 26 2009 Location: Tennessee Status: Offline Points: 20 |
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 Posted: Apr 06 2009 at 8:05am |
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Kathleen-
Thanks for your encouraging words. You are a trooper. Mind over matter-I am trying to believe all will be well. I feel time will make things better.
 Hugs!
Alyson
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Dx01/30/08 Age 42 Stage1,grade 3
.9cm tumor, bilat masect. 4xAC, 4xTaxol,Recon.09/08 |
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Valkayri
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Joined: Apr 04 2009 Location: St. Louis Status: Offline Points: 31 |
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Posted: Apr 06 2009 at 9:49am |
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Hello All-
I am a newbie to the site but am so glad to have found it! I also am experiencing reoccurance anxiety and no one around who can relate. I was diagnosed last May at age 35 with tnbc tumor#1-3.7 cm, tumor #2-.5cm both grade 4. Four rounds dose dense of AC and Taxotel and a bilateral mastectomy Oct1 2008. Reconstruction began Jan2009-now "full" but ina holding pattern until after summer for the "real" fake ones to be put in. I am also a BRCA2 carrier from my dad's side.
I saw a comment on the BRCA1 stats and it is scary for tnbc, 7 out of 10 get TN however the BRCA2 is only 1 out of 7(guess that makes me part of a very exclusive group!) I am also in a trial for biophosphates and to see if they help prevent bc from metatisizing to bone(which was a good side effect when they did the original trials for them) So we will see ifthis does any good since I have also found taht tnbc seems to metastisize in soft tissue like the lungs or brain rather than bone anyway!
Anyway-that's my two cents and thanks for being here..I feel so much better knowing I'm not the only one out there agonizing:)
Blessings-
Kara
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Terri
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Joined: Nov 12 2007 Location: FL Status: Offline Points: 578 |
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Posted: Apr 06 2009 at 10:05am |
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Welcome Kara,
Although no one wants this diagnoses, we are in good company here and very lucky to have this site. No one understands us like our fellow TN`s.
There are several women who are on biphosphonates (sp?). In Canada they are prescribed to women for the prevention of bone mets. Our Connie (cg) knows alot on this subject.
Isn`t it strange how we are all TN but have different BRCA status? I am BRCA 1/2 NEG. So what`s the missing link? We all pray they figure it out soon!
Hugs,
Terri
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IDC DX 8/17/07 (age 41)
Stage 1 Grade 1-2, 1.35 cm 2 nodes neg, Lumpectomy 10/07 Chemo: FEC 100 x 6, 35 rads BRCA 1/2 NEG PET/CT & Brain CT Nov 09 Brain MRI Aug 2012 NED |
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trip2
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Joined: Jun 03 2007 Location: Under Palm Tree Status: Offline Points: 8549 |
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Posted: Apr 06 2009 at 10:34am |
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Welcome Tara, it is so nice to have you join up with us. We don't like having this diagnosis but if we could all just come together maybe we could figure out something ourselves.
Terri speaking of the BRCA 1/2, I had posted a study that suggested brca 1 might not react to the chemo like planned. My thinking is this brca stuff may play a big part in what chemo we get. So this can get very entertwined like a web, good grief.
 That is of course for those of us brca 1 but we do have other variables here for all of us. Edited by trip2 - Apr 06 2009 at 10:37am |
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Stage 2 2003
Stage 1 2007 BRCA 1+ |
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Alyson
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Joined: Mar 26 2009 Location: Tennessee Status: Offline Points: 20 |
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Posted: Apr 06 2009 at 10:36am |
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Hello Kara:
This site has really helped me. For months, I looked at it, but then decided I needed to communicate with others in my situation. I feel like I am not going crazy and this is a normal process after bc.
I too had a bilateral masectomy (01/08) and waited to begin reconstruction after chemo. I had expanders put in 09/08 and the implants in 01/09. I love my new breasts (a nice C cup) and am awaiting nipples later this month followed by tatooing areola. It has been a long process, but worth it.
I was curious-did your dad have a strong family history of bc? I have not been tested, but bc is on my dad's side. His mom and his dad's sister had bc in their 70/80s. My onc did not think this was a strong enough history to be tested, but is recommending ovary/uterus removal. Has your onc. suggested this?
Truly-
Alyson
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Dx01/30/08 Age 42 Stage1,grade 3
.9cm tumor, bilat masect. 4xAC, 4xTaxol,Recon.09/08 |
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Terri
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Joined: Nov 12 2007 Location: FL Status: Offline Points: 578 |
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Posted: Apr 06 2009 at 11:23am |
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Pam,
I missed the article ...Did it say that having the BRCA1 can make chemo not work as well or just different chemo needed? It`s another mystery with this disease if we can have the same pathology but if one carries BRCA1 gene it changes how the tumor reacts!
Terri
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IDC DX 8/17/07 (age 41)
Stage 1 Grade 1-2, 1.35 cm 2 nodes neg, Lumpectomy 10/07 Chemo: FEC 100 x 6, 35 rads BRCA 1/2 NEG PET/CT & Brain CT Nov 09 Brain MRI Aug 2012 NED |
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trip2
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Joined: Jun 03 2007 Location: Under Palm Tree Status: Offline Points: 8549 |
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Posted: Apr 06 2009 at 11:43am |
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Stage 2 2003
Stage 1 2007 BRCA 1+ |
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trip2
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Joined: Jun 03 2007 Location: Under Palm Tree Status: Offline Points: 8549 |
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Posted: Apr 06 2009 at 11:47am |
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Terri, And Terri, according to study they point out that basal which some are make them chemoresistant?? So how come we aren't all tested for basal? Jessie is the only member I can recall that was told she was not basal.
What do you think?
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Stage 2 2003
Stage 1 2007 BRCA 1+ |
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Valkayri
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Joined: Apr 04 2009 Location: St. Louis Status: Offline Points: 31 |
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Posted: Apr 06 2009 at 1:28pm |
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Alyson-
My grandmother died after a 15 year battle in 1982 and all of her sisters have since gotten bc but survived. My dad had prostrate cancer at 50 which is young and luckily we had the same general practicioner so that helped with her being proactive about me( I had my baseline mammo at 34, altho it woud not have mattered as the lump was so big and obvious in the mamo done when I found it but nice to know my Dr. was on my side early:) ) So with my age and family history they recommmended the test.
Fortunately the link between BRCA2 and ovarian cancer is very small, it is almost always one or the other not both and therefore due to my age we are waiting for any further steps in that area, but I am still getting ultrasounds every six months to be sure. The link between BRCA1 and getting both is much stronger however and I guess in my case that is the one bright spot in this...oh and the new eternally peky boobs:)
I would get the test first though. as both my oncologist and obgyn have said, "Forcing the body into early menapause is never the best choice if it can be avoided."
Good luck with everything-I am opting for no nipples because I am just happy to never have to wear a bra again and don't want anything to interfere with that:)
Blessings,
Kara
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Alyson
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Joined: Mar 26 2009 Location: Tennessee Status: Offline Points: 20 |
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Posted: Apr 06 2009 at 3:03pm |
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Thank you for the info Kara.
According to my ob/gyn my ovaries are dead from the chemo and I am in full blown menopause since chemo was in my early 40s. If chemo did not put you in early meno. you are lucky-it is very hot!! I am on the fence about the ovary removal-I am afraid it will make the menopause symptoms even worse-maybe I still have some estrogen!
The nipple issue is personal. I love my nippleless breasts, but my husband just can't get used to no nipples (I never knew he was a nipple man?!). He has been through so much with my bc that if nipples make him happy I will have them, but they will be small!!
Thanks again and best wishes to you.
Alyson
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Dx01/30/08 Age 42 Stage1,grade 3
.9cm tumor, bilat masect. 4xAC, 4xTaxol,Recon.09/08 |
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jadesloge
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Joined: Jun 02 2008 Location: OR Status: Offline Points: 66 |
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Posted: Apr 06 2009 at 3:09pm |
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So my PT said to me today. " At least the worst is over" meaning treatment. I didn't really know how to reply. Is it really over? I sort of see it as a continum with no real breaks, just some occasional relief like when a test comes back with good news. I am sure that physically the worst is over, but mentally?
Julie
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Alyson
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Joined: Mar 26 2009 Location: Tennessee Status: Offline Points: 20 |
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Posted: Apr 06 2009 at 3:41pm |
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I think the mental part of bc is 100x worst than the physical part of treatment. I just can't escape the terror in my mind. I know it is the devil's workshop, so I try to be positive and thankful, but the worry creeps in. I pray for peace and joy in my crazy head!!
Alyson
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Dx01/30/08 Age 42 Stage1,grade 3
.9cm tumor, bilat masect. 4xAC, 4xTaxol,Recon.09/08 |
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Terri
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Joined: Nov 12 2007 Location: FL Status: Offline Points: 578 |
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Posted: Apr 06 2009 at 5:51pm |
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Pam, I am frustrated on so many levels after reading this article. First of all, when I asked my surgeon if my tumor was basal like, he said it wasn`t tested for that. He said that getting into such detail isn`t important and not routinely done! And he`s the one who convinced me to give my tumor up to research. So I can`t take it anywhere else to do better testing. Back then I thought they just threw them away so I wanted to help other women by letting scientists study it. I might have had more tests done on it before giving it away if I knew they preserve it somewhere.
The article says the basal like are more chemo resistant, so that in itself means we should be running that test! Also, BRCA1 benefit from FEC but not the FEC + taxane regimen? But non BRCA 1 TN`s benefit from the FEC + taxane regimen. I am BRCA1 NEG so I should have had the FEC + Taxane and only had FEC. When I asked my med onc about Taxanes during my chemo he said I didn`t need it because I was stage 1. Meanwhile, many here who are BRCA1 have the Taxanes. It`s like it`s all BACKWARDS!!
I know I can`t undo the past and have been better about just hoping I`ve had good treatment....but then you read these articles and ask your Dr`s and they tell you it`s not important!!
 Did I understand the article correctly, Pam?Terri
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IDC DX 8/17/07 (age 41)
Stage 1 Grade 1-2, 1.35 cm 2 nodes neg, Lumpectomy 10/07 Chemo: FEC 100 x 6, 35 rads BRCA 1/2 NEG PET/CT & Brain CT Nov 09 Brain MRI Aug 2012 NED |
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MicheleS
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Joined: Jan 21 2009 Status: Offline Points: 23 |
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Posted: Apr 07 2009 at 2:10am |
Julie~ That is EXACTLY how I feel.  |
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HairSprayMom
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Joined: Mar 20 2009 Location: Alabama Status: Offline Points: 137 |
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Posted: Apr 07 2009 at 2:59am |
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Me too...and also feeling quite ignored post treatment. I understand that there is a lot going on in my onc practice. He is in a large practice in a very nice facility, but sometimes you feel overlooked after treatment is over. When you call...even if they could only tell you "Sorry I can't tell you anything." at least they called you back, the social worker at mine did not even return my call. Well my Doc is going to get an earful from me tomorrow. They need to consider the timing when scheduling these things. All of their imaging is on site, so I don't feel like there is any reason to not get your results ASAP! Sorry to just rant, but I am really stressed and peeved off! At least my wait is over tomorrow! YEA!
Regina |
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39 yr old. DX Metaplastic Carcenoma/Triple Negative IIIb 9-26-07, bilat mod rad MX 10-1-07, 2.7cm in Chest Wall. Dense dose Chemo 11/07-03/08 AC/Tax. NED 4-09 YEA! Deconstructed 12-13-10 & Happy!
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krisa
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Joined: May 21 2008 Location: Portland, OR Status: Offline Points: 1090 |
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Posted: Apr 07 2009 at 6:18am |
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bingo! the worst is not over--i felt more secure during treatment.
now i feel like a piece of tissue paper blowing in the wind--always
waiting for a phone call, a result , an appointment, a test.....waiting
waiting waiting.
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trip2
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Joined: Jun 03 2007 Location: Under Palm Tree Status: Offline Points: 8549 |
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Posted: Apr 07 2009 at 7:48am |
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Hi Terri, this is my third try, I guess my frustration is coming thru to the keyboard.
Yes I think you've got it in a nutshell. I was shocked to see that they already know basal can be chemoresistant yet this test is not routinely done. Why is that?
My ex-Onc when I asked if my tumor was basal looked at me like I had 3 eyes. What is this basal he says? Ha I had him and he knew it. He's gone.
Yes we cannot change what has been done but I think it is important to keep learning. The new ones need to see these studies to incorporate into their questions.
Why isn't the basal test done, get tested for the brca mutations. Both of these things and probably more can possibly affect how one does with their treatment.
Good grief why aren't they telling women this. It is their lives. We are lab rats and what are the other secrets that could help us?
I too am surprised you didn't get a taxane.
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Stage 2 2003
Stage 1 2007 BRCA 1+ |
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trip2
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Joined: Jun 03 2007 Location: Under Palm Tree Status: Offline Points: 8549 |
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Posted: Apr 07 2009 at 7:58am |
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Regina,
Next time you get a scan go straight to the medical records office and have them mail you a copy of your results and it will probably be there before you hit the doc's office.
Then you have a copy for your file. You also have a chance to look at it to see what questions you might have instead of them just telling you their view.
I always do this. I found something serious one time on a Cat scan result but didn't realize it until I became very ill and it was right there on my scan results but because it didn't apply to Oncology I wasn't told I needed to see my heart doc. Lots of reasons this is a good idea.
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Stage 2 2003
Stage 1 2007 BRCA 1+ |
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trip2
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Joined: Jun 03 2007 Location: Under Palm Tree Status: Offline Points: 8549 |
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Posted: Apr 07 2009 at 8:02am |
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The worst is over? Why didn't I know that?
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Stage 2 2003
Stage 1 2007 BRCA 1+ |
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Alyson
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Joined: Mar 26 2009 Location: Tennessee Status: Offline Points: 20 |
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Posted: Apr 08 2009 at 5:25pm |
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Regina-
Sending good thoughts and prayers that all went well today.
Alyson
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Dx01/30/08 Age 42 Stage1,grade 3
.9cm tumor, bilat masect. 4xAC, 4xTaxol,Recon.09/08 |
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