"Elderly" TNBC Women |
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nonna1642 
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Joined: Jan 17 2012 Location: California Status: Offline Points: 216 |
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 Posted: Jul 06 2013 at 7:46pm |
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HI Linda LRM216,
So am I. Who would have thought that a nuclear stress test @ a cardiologist's office would find cancer & not a ultrasound test @ a hospital. The good news I just celebrated 3 years NED. Getting ready for right l shoulder surgery on the 19th. Maybe this will also help the rib bone pain in my left chest wall. They can't find out what is causing that. Maybe I am overusing it to compensate for my shoulder pain. Dear NanaMimi, I hope you are enjoying your vacation. I am enjoying a new little great grandson who will be 3 months on the 24th of this month. If you can get some wigs in different colors and styles. I was able to get them for free from the American Cancer society & had fun with them. No one knew what color or style I would be wearing each day. I could never get the scarfs to work but I had fun with wigs & hats. Take care both of you. We will beat this & find a cure one day.
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Dx: age 70 IDC TNBC Grade 3 5/10 left mastectomy Stage IIB 5.1 cm no reconstruction followed by chemo of Taxotore & Cytoxin then radiation
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wildabandon
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Joined: May 30 2013 Location: Greenville NC Status: Offline Points: 53 |
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Posted: Jul 06 2013 at 8:04pm |
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Hi, going to show my Newbie ignorance. I often see the terms NED on this site but do not know what it means.......
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IDC/level3/triple negative
4 nodes-negative/ metaplastic sarcomatoid carcinoma 5/15/13 left lumpectomy 06/04/13 begin A/C 6 rnds Taxol 9wks 33 rads NED 02/28/2014 Mets in both lungs & chest June 2014 |
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SagePatientAdvocates
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Joined: Apr 15 2009 Status: Offline Points: 4748 |
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Posted: Jul 06 2013 at 8:41pm |
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Hi wildabandon,
NED is one of the best acronyms in the English language... No Evidence of Disease.... It has been shown in several studies that if a woman is shown to be NED after treatment, her long-term chance of survival is enhanced. warmly, Steve
Edited by steve - Jul 06 2013 at 8:44pm |
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I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates
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wildabandon
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Joined: May 30 2013 Location: Greenville NC Status: Offline Points: 53 |
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Posted: Jul 06 2013 at 10:39pm |
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Definitely a great acronym!
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IDC/level3/triple negative
4 nodes-negative/ metaplastic sarcomatoid carcinoma 5/15/13 left lumpectomy 06/04/13 begin A/C 6 rnds Taxol 9wks 33 rads NED 02/28/2014 Mets in both lungs & chest June 2014 |
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lisavw
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Joined: Jul 09 2013 Location: QLD,Australia Status: Offline Points: 4 |
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Posted: Jul 14 2013 at 6:18am |
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My mother who lives in a small town in NZ was diagnosed with TNBC and had a mastectomy with axillary clearance in June 2012, age 76.
I have only just been told THIS WEEK by one of my sisters... she said she only told me cos the cancer has returned. According to my other sister, my mum thought I would try to influence her treatment decisions as I am a nurse, therefore she kept this from me. Of course I immediately phoned my mum ( I live in Australia) and reassured her I would never have tried to influence her decisions at her age. BUT I am worried about what I am reading....that TNBC is highly hereditary, and various sources mention BRAC1 testing. My sisters seem to believe that there is absolutley no need for any daughters to get tested, they said the surgeon had told them due to the age of diagnosis, there is absolutely NO RISK for us girls. I cannot help but worry they may not be getting the right info...after all, the same surgeon told my mum not to worry about 2 more lumps and a skin rash that came up over the mastectomy scar, that it would not be the cancer back. My mum then insisted a biospy was done and well yes you guessed it! ANY ADVICE appreciated Lisa
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nonna1642
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Joined: Jan 17 2012 Location: California Status: Offline Points: 216 |
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Posted: Jul 16 2013 at 12:19am |
 Dear Lisa,I am so sorry to hear about your mother & will keep her in my prayers. I was diagnosed in 2010 at the age of 70. I don't know much about the BRCA1 or 2 testing. I know there are certain criteria's that must be met. The best thing would be to talk with a certifies genetic counselor like I am going to I am kind of on the boarder with my family history. I may be able to get it done based on some family heritage that I am trying to research which is not easy when family members have passed on. Things like cancer were not discussed years ago like they are now. Thank God your mum insisted on a biopsy. Mine was discovered by a nuclear stress test @ my cardiologist's office & not by an ultrasound biopsy in 2007 when it was very small. maybe others will be more helpful with this information. Steve a senior member on this site is very knowledge of this area. Best of luck to you. Nonna...Barbara
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Dx: age 70 IDC TNBC Grade 3 5/10 left mastectomy Stage IIB 5.1 cm no reconstruction followed by chemo of Taxotore & Cytoxin then radiation
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lisavw
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Joined: Jul 09 2013 Location: QLD,Australia Status: Offline Points: 4 |
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Posted: Jul 16 2013 at 4:49am |
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Thank you so much Nonna Barbara,
I shall contact a genetic counseller like you suggested, also keen to hear anything Steve might add too. Excellent news about you NED for 3 years!!!! all the very best for surgery on 19th, like you said the pain may well be due to overcompensation. All the best Lisa
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kirby
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Joined: Oct 09 2007 Location: bay area,california Status: Offline Points: 1088 |
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Posted: Jul 16 2013 at 2:12pm |
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Lisavw, a thread was just done on the topic of age/genetic testing/insurance etc. I am not adept at looking up but you can do a search on it. It was within the last 6 weeks . Definitely within 3 mos.
Generally those dx with a genetic mutation have a higher incidence of having TN. But those of us dx. with TN, do NOT have a higher incidence of carrying the mutation. Those with BRCA generally are dx. at younger ages. General recommendations for genetic testing for those dx with TN are age 60. I think for other types the age set is lower. Genetic testing is done on the person with the cancer first, then if they are positive, it can be extended to other family members. There is a lot of info on this site about it and another website..FORCE, aimed at those that do have a genetic factor. I was dx. at age 44, just as my mother had passed from ovarian cancer at age 64. I had testing in 2003 and again, extensive testing thru the King study a year ago. Both tests were negative. Just having a dx of TN does not make it hereditary. I am sorry to hear of your mothers reccurance. TN is usually ALWAYS a grade 3 which is more aggressive. I hope your mum is doing well. |
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kirby
dx Feb. 2001. Age 44 Lumpectomy 2cm. no nodes stage 1 grade 3 4 rnds AC, 35 rads |
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lisavw
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Joined: Jul 09 2013 Location: QLD,Australia Status: Offline Points: 4 |
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Posted: Jul 16 2013 at 7:20pm |
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Hi Kirby,
Thanks heaps for your info. I will look for that thread and also have a look at FORCE too. It seems I may not be able to get tested even if I wanted to since my mum is not getting the test. Thanks again. Lisa x
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nonna1642
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Joined: Jan 17 2012 Location: California Status: Offline Points: 216 |
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Posted: Jul 17 2013 at 3:49am |
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Dear Kirby,
What is the King study? I have never heard of that before. Nor have I heard of FORCE. both worth looking into. Thanks. Dear Lisavw, Thanks. They moved my surgery up to Thursday instead of Friday. Hope all goes well. I have faith in my doctor so that helps. I am still praying for your mum.  Nonna Barbara
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Dx: age 70 IDC TNBC Grade 3 5/10 left mastectomy Stage IIB 5.1 cm no reconstruction followed by chemo of Taxotore & Cytoxin then radiation
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kirby
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Joined: Oct 09 2007 Location: bay area,california Status: Offline Points: 1088 |
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Posted: Jul 18 2013 at 2:24am |
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The King study was started several years back and brought to this sites attention by wonderful Stephen who keeps his ear to the ground for anything genetic. Dr. Marie-Claire King , a geneticist at the university of Washington has led many studies over the years on different human conditions. She discovered the gene that led to BRCA 1 in 1990 and later BRCA2. The study I referenced was a continuation of some of her work in breast/ovarian cancer and they were looking for participants that had TN. I don't remember all the particulars and criteria. Again, do a search on this site. Probably the first noting (the earliest date) will tell you the most.
Force has been around many years. I believe they were started in the quest of information and people taking charge of their lives that live with genetic and familial cancers. |
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kirby
dx Feb. 2001. Age 44 Lumpectomy 2cm. no nodes stage 1 grade 3 4 rnds AC, 35 rads |
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Grateful for today
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Joined: Sep 21 2011 Location: U.S.A. Status: Offline Points: 1835 |
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Posted: Jul 18 2013 at 2:06pm |
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Nonna and Lisa and all,
Here's some links: FORCE FacingOurRiskofCancerEmpowered http://www.facingourrisk.org/ Thread re: King study http://forum.tnbcfoundation.org/important-tnbc-studyking-lab_topic9642_page1.html Prior BRCA threads.........and think there's more - so other please post those. This might be one of the major BRCA threads http://forum.tnbcfoundation.org/very-important-news-re-tnbc-brca-testing_topic8458_page1.html?KW=BRCA One can check for BRCA articles on: http://forum.tnbcfoundation.org/open-access-links-articles-tnbc_topic9440.html Other BRCA threads: http://forum.tnbcfoundation.org/brca1-breast-and-ovarian-cancers_topic11335.html http://forum.tnbcfoundation.org/nci-brca-information_topic11189.html http://forum.tnbcfoundation.org/supreme-court-rules-against-myriad_topic11249.html BRCA Variants http://forum.tnbcfoundation.org/brca1-and-brca2-variants_topic11231.html http://forum.tnbcfoundation.org/any-brca-variance-result-gals_topic11125.html With caring and positive thoughts, Grateful for today.................Judy ----------------------------------------------------------------- Lisa, You mentioned your Mum lives in New Zealand and you live in Australia. The following may or may not be helpful. There is a thread: http://forum.tnbcfoundation.org/any-other-aussies_topic9328_post93631.html?KW=Australia#93631 Someone posted on the above thread about: http://www.bcna.org.au/group/16948 (I only know that bcna.org link was posted......no other info on the group. Their Strategic Advisory Group does include physicians in Australia and New Zealand. ....thus, thinking it's an OK resource to share as a FYI.) Lisa, you might think of posting on http://forum.tnbcfoundation.org/any-other-aussies_topic9328_post93631.html?KW=Australia#93631 regarding any thoughts of where best 2nd opinions/TNBC experts are in Australia/New Zealand IF your Mum is considering a 2nd opinion. Think you know from the site how often it is recommended to get a 2nd opinion/expert TNBC consult with a recurrence. Thinking you have noticed on the forums ANYTIME a rash is mentioned with TNBC it is advised to be sure that IBC (Inflammatory Breast Cancer) has been ruled out. When there is a rash, it does not mean it is IBC. When there is a rash, it is just important to rule out IBC. One can also have a recurrence that involves skin mets which is not IBC. Would assume one could also have some other skin condition at the same time of a recurrence BUT one would want to rule out skin mets AND Inflammatory Breast Cancer. There are some threads on IBC on the forum: http://forum.tnbcfoundation.org/inflammatory-breast-cancer_forum17.html Please post if you have any questions on the above. With caring and good thoughts to you and your Mum, Grateful for today...............Judy |
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Nana Mimi
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Joined: Jun 14 2013 Location: Framingham, MA Status: Offline Points: 34 |
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Posted: Jul 19 2013 at 10:53am |
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Hello to All,
I'm back from vacation and have been jumping around here posting this and that! Don't miss my "good chemo side effect" posting! Steve, thanks for the info about a less costly genetic testing option. I had already sent a saliva sample to Myriad before the SC made its ruling. I just went ahead and told them to do the test. "In for a penny-in for a pound." as they say! It's not that I can't afford the cost it's just annoying to deal with all the arbitrary rules and regs that seem to be like road blocks to getting out of this rat's maze! My onc felt that many of the labs that are currently testing for various other genes would most likely "bundle in" the BRCA testing and you would be paying for info you don't need. The woman I have been speaking with at Myriad inquired about financial assistance here in MA. She was told that they are not taking any more applications at this time. And I want to tell you how thankful I am to have found this safe haven of caring, support and information! I attended a (general) cancer support group meeting a couple of weeks ago and felt luck to have what I have! I know that sounds strange but it's true. Last night I went to a breast cancer support group and no one there had even heard of TN!!! It's so nice to be here! Nana Mimi |
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65 yrs old. Dx 5/13. IDCIS. TNBC. Lumpectomy 1.1cm clean margins. SNB 0/3. Stage 1. Grade 2. 4/4 rnds TC. Rad X 33. Done!
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Grateful for today
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Joined: Sep 21 2011 Location: U.S.A. Status: Offline Points: 1835 |
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Posted: Jul 21 2013 at 10:40pm |
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CJWatson,
Missed that you had started radiation on 6/10/13. Thinking you are now nearing the completion of your radiation or maybe even have already finished it. Whichever case it is.....hope you were a minimalist when it came to radiation side effects. With caring and positive thoughts, Grateful for today.............Judy |
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lisavw
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Joined: Jul 09 2013 Location: QLD,Australia Status: Offline Points: 4 |
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Posted: Jul 21 2013 at 11:17pm |
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Judy thank you so much for the links. I am off to NZ in a few days time to visit my mum who I have not seen for 7 yrs. I am bringing my 1 yr old daughter to meet her.
I will also hope to sit in her CT scan results appointment. Will catch up after that meanwhile I will check out the links, Kindest, Lisa
Edited by lisavw - Jul 21 2013 at 11:18pm |
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CJWatson
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Joined: Dec 11 2012 Location: Florida Status: Offline Points: 15 |
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Posted: Jul 22 2013 at 12:57pm |
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Thank you, Judy. My last boost will be this Thurs and I will be done with rads. The treatment was fairly standard, 28 whole breast and then 5 boosts. But there was also something different added by my RO.Back in Oct when I was diagnosed, the PET scan showed the two lumps in my breast, a couple of axillary nodes lit up with cancer, and a couple of inner mammary nodes lit up also -- those are the ones which are in the center of your chest, so deep under the sternum that they can't be biopsied without major surgery.
Chemo had killed the cancer in my breast, confirmed by a lumpectomy, and killed the cancer in the axillary nodes according to the Sentinel Node biopsy at the same time. However, there was no way to check those inner nodes. This disturbed my RO greatly. He said it was probably 99% that those nodes were now clear of cancer as well from the chemo. But that 1% really worried him. He went ahead and marked off an irregular 2x2" area right where my cleavage would have been if I had been 30 years younger (seems to have moved down a bit nowadays). He had a lead alloy cutout made to focus the beam and protect other areas. He then set it up for electron treatments -- basically the same as what we call boosts -- but 28 of them. The electrons, contrary to the photons that most rads are, are very shallow and wouldn't go all the way through me. He did make sure that the rays avoided my heart and lungs, hence the irregular shape. Talk about your skin getting eat up!! It will eventually peel off but I can probably expect a darker area there for years to come. Still worth it. For the rest who have to take rads as part of the treatment for their BC, I send prayers and best wishes that they will have an easy time of it. Other than that special area, the rest of my breast has held up well; some burning pain and some itching, but tolerable. Carol
Edited by CJWatson - Jul 22 2013 at 1:01pm |
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64 at DX
10/5/2012, IDC, 2 lumps total 5cm, Stage IIIa, Grade 3, 1 node positive, ER-/PR- HER2 10/16/2012 Chemo: AC x 4 04/08/2013 Lumpectomy- 3mm residual, clear margins, SNB clear 6/10/13 rads |
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nonna1642
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Joined: Jan 17 2012 Location: California Status: Offline Points: 216 |
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Posted: Jul 23 2013 at 3:39pm |
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Thanks Kirby & Gratefulfortoday,
For the info on the King study and FORCE. I can not type very well left handed since my shoulder and hand surgery on Thursday but the surgery went well I did want to thank you both for the info and will check out these sites. Nonna
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Dx: age 70 IDC TNBC Grade 3 5/10 left mastectomy Stage IIB 5.1 cm no reconstruction followed by chemo of Taxotore & Cytoxin then radiation
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Grateful for today
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Joined: Sep 21 2011 Location: U.S.A. Status: Offline Points: 1835 |
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Posted: Jul 27 2013 at 10:26pm |
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Carol,
Would like to acknowledge your completing your radiation. You made it through the course. Some people like "Congratulations". Some people prefer..........Hoping you find your "new normal" as easily as possible. There can be many different feelings after radiation treatments. Appreciated your sharing how your radiation onc individualized your plan.......that info may help others in discussing their options with their radiation oncs. From one of your initial posts, you had '......I had opted out of Taxotere after the A/C was done in late Dec because of the side effects......for radiation first and then I may discuss further chemo......." Hoping you have received whatever information you needed to decide about further chemo or maybe you are still in the process of consulting/deciding. With caring and positive thoughts, Grateful for today............Judy ------------------------------------------- Nonna, Sending caring and healing post shoulder/hand surgery thoughts your way. Thanks for lettng us know the surgery went well. Grateful for today................Judy -------------------------------- Lisa Hope your visit with your Mum in NZ was comforting to you both. What a joy it must have been for her to meet your 1 year old daughter. With caring and good thoughts to you and your Mum, Grateful for today..............Judy |
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MLindaG
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Joined: Feb 16 2013 Location: Pittsburgh PA Status: Offline Points: 380 |
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Posted: Jul 28 2013 at 6:52am |
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CJ, I had a similar journey with the CPR to chemo and having my chest wall lymph light up on my initial CT scan. They too felt that I had cancer in my chest wall.....and hopefully was gone after chemo like everything else..........I did not have any special rads to this area.........wish I had..........as this still bothers me from time to time. Good luck on your rad recovery.......my skin quickly recovered.
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Dx TNBC 6/12; age 59; Stage 3, Grade 3; 3.5 cm, 3/10 nodes + chest wall nodes; A/C x4, T x 12 completed 12/12 with PCR, 2/13/13 lump; IMRT Rads x 33 completed 5/22/13 BRCA 1 negative.
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Grateful for today
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Joined: Sep 21 2011 Location: U.S.A. Status: Offline Points: 1835 |
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Posted: Jul 31 2013 at 10:39pm |
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FYI: Just posted on: http://forum.tnbcfoundation.org/topic11087_post116070.html#116070
Please consider calling/emailing your US Representative. Grateful for today...............Judy |
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