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Lee21 
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Joined: Dec 22 2011 Location: Michigan Status: Offline Points: 752 |
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 Posted: Dec 22 2011 at 11:29am |
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I've been looking at this site for a few days since my new diagnosis 2 weeks ago to the day but I just registered so I can get connected.
I always thought I was low risk for BC and not as vigilant as I should have been with annual mammography (where have I heard that one before!). I had one 2 years ago and the report said I have very dense breasts making it difficult to be certain but otherwise normal. Given that dense breasts is a risk factor (which I didn't know then) I wished that there was a note in the radiology report to that effect which would have motivated me to get a mammogram last year instead of being forced to this month because of symptoms. Probably would have made significant changes to my diet as well. Hind sight is a wonderful thing. In any event, I had a diagnostic mammogram with an ultrasound guided core biopsy which came back with a diagnosis of IDC, grade 3. As soon as I saw it was grade 3 I knew I would be in the poorer prognosis category. The receptor status confirmed low ER, PR expression (4%, 3% respectively) and HER2 1+. By ultrasound the mass is about 1.7 cm so I am hoping that it will stay < 2 cm with the actual sample. I met with the breast care team at the comprehensive cancer care center close to where I live and was recommended to have a central lumpectomy with removal of the nipple-areola complex because I had discharge. I haven't had staging yet -- the sentinel node bx will be done at the time of surgery. I am probably going to get the chemo followed by RT, all very familiar sounding to all of you. I am looking into getting a second opinion at another cancer center out of state but am concerned that any delay would affect my survival chances. Any thoughts on that anyone? It is comforting to see the resources that are available on this website (chemo tips, radiation tips, etc.) and that there will be people to connect with in the days to come. |
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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: Dec 22 2011 at 11:56am |
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A thought: Lee21 started a new forum "newly diagnosed" under the forum topics in the Welcome New Members forum. It might be helpful to post replies to Lee21 on her: "newly diagnosed" forum. "Newly diagnosed" with a capital "N" was started by Sandra B. Just a thought. Welcome, Lee.......will post on newly diagnosed. Judy |
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SagePatientAdvocates
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Joined: Apr 15 2009 Status: Offline Points: 4748 |
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Posted: Dec 22 2011 at 2:42pm |
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Dear Lee21,
The two places, out-of-state that come to mind are MD Anderson Cancer Center(MDACC) in Houston (ranked #1 in the country) and Memorial Sloan-Kettering Cancer Center(MSKCC) in NYC (ranked number 2 in the country) I would suggest you consider getting an appointment with Dr. Ana Maria Gonzalez-Angulo at MDACC or Dr. Tiffany Traina at MSKCC I will send you a PM with my contact info. I am a patient advocate on a volunteer basis and would be happy to walk you through, if you wish, how to get an appointment at each breast clinic. all the best, Steve |
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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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SandraB
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Joined: Oct 29 2011 Location: Australia Status: Offline Points: 130 |
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Posted: Jan 06 2012 at 1:47am |
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Hi folks,
I hope you all enjoyed the holiday period. Just home from my third cycle of FEC and once again - a breeze. Went straight out for a walk with the dogs when I got home. I'm half way through chemotherapy - what a great feeling. My next 3 cycles will be Taxotere. I'll be doing rads in April/May. Six weeks - irradiating the axilla, breast and neck. How is everyone else going with treatments? Sandra  |
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Dx 09/2011 TNBC BRCA 1 & 2 -
T2 2.5cm N1 3/29 nodes. Lumpectomy & ALND 10/2011 FEC-D 11/11 - 03/12 Radiation finished 05/2012 |
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jeri49
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Joined: Dec 27 2011 Location: AR Status: Offline Points: 9 |
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Posted: Jan 06 2012 at 4:19am |
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Just completed first chemo treatment yesterday. Everything went really well. I am sitting here 12 hours later with insomnia but no other problems.
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jerimsnurse
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SandraB
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Joined: Oct 29 2011 Location: Australia Status: Offline Points: 130 |
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Posted: Jan 06 2012 at 5:29pm |
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Hi Jeri,
So pleased to hear you did well after your first treatment. You should continue to do well too. My oncologist told me how you react to the first cycle is a good indication of how you will cope with the rest. What cocktail are you on? I just passed my half way mark - yeah!! What a relief. Damn re the insomnia. Is that from the steroids they gave you? Sandra
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Dx 09/2011 TNBC BRCA 1 & 2 -
T2 2.5cm N1 3/29 nodes. Lumpectomy & ALND 10/2011 FEC-D 11/11 - 03/12 Radiation finished 05/2012 |
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rigatonismom
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Joined: Sep 22 2010 Location: Albuquerque, NM Status: Offline Points: 266 |
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Posted: Jan 06 2012 at 5:31pm |
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The steroids always got me!
Nita
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DX 09/10 TNBC Stage3c, grade3, Tumor 2.7cm, chemo started 9/29/10, AC x4, Taxol x12, lumpectomy 4/11/11-tumor .6cm, 3+/22 nodes, radiation x 30 finished 6/30/11.Clinical Trial Cisplatin,PARP 8/23/11
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SandraB
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Joined: Oct 29 2011 Location: Australia Status: Offline Points: 130 |
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Posted: Jan 06 2012 at 7:44pm |
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I am such an oddball, the steroids don't keep me awake! Am starting to think I have iron running through my veins because I am not knocked around by any of the treatments so far *knock on wood*
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Dx 09/2011 TNBC BRCA 1 & 2 -
T2 2.5cm N1 3/29 nodes. Lumpectomy & ALND 10/2011 FEC-D 11/11 - 03/12 Radiation finished 05/2012 |
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SandraB
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Joined: Oct 29 2011 Location: Australia Status: Offline Points: 130 |
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Posted: Jan 17 2012 at 3:34pm |
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Hi folks,
I have an appointment with the genetic counsellor today to discuss genetic testing. I'm not sure if they will go ahead with the test because there is no family history of cancer whatsoever. On another note, still sailing through chemo. Oddly, I find it is getting easier as I go, not harder. The first FEC treatment was the most uncomfortable. And my hair is even starting to grow back. It is straggly and grey, but growing nonetheless. I am now at the half way mark for chemo and move on to Taxotere next (3 cycles). The radiation oncologist wants to do rads to the whole breast, axilla, the supraclavicular nodes and my neck. It seems they're not taking any chances and that gives me some peace of mind. Hope everyone else is travelling well, Sandra
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Dx 09/2011 TNBC BRCA 1 & 2 -
T2 2.5cm N1 3/29 nodes. Lumpectomy & ALND 10/2011 FEC-D 11/11 - 03/12 Radiation finished 05/2012 |
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Natalie
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Joined: Nov 11 2011 Location: Bay Shore NY Status: Offline Points: 473 |
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Posted: Jan 17 2012 at 5:24pm |
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I n the limited experience I have Sandra, they will still reccomend the Brca testing. You could just happen to be the first carrier. It is also good for family history.
Glad the chemo is pretty easy for ya, knock on wood.
Natalie
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TNBC stage1 size 1.8, grade3 no nodes 4/11 Lumpectomy 5/11 4cycles DD A/C 4cycles DD Taxol. Double Mastectomy 12/11 BRCA all neg
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SandraB
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Joined: Oct 29 2011 Location: Australia Status: Offline Points: 130 |
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Posted: Jan 18 2012 at 4:01am |
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Thanks Natalie - physically this has been a breeze for me. I'm very lucky. Mentally it is a challenge. The meeting with the genetic counsellor was really interesting. I learnt a lot.
There is a bit of an echo in here, lol, so I'm going to stop talking to myself. I sincerely wish everyone the very best with their treatments and health, Be well and goodbye! Sandra
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Dx 09/2011 TNBC BRCA 1 & 2 -
T2 2.5cm N1 3/29 nodes. Lumpectomy & ALND 10/2011 FEC-D 11/11 - 03/12 Radiation finished 05/2012 |
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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: Jan 18 2012 at 11:08pm |
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Hi Sandra,
If there was a Wonder Woman of chemo, you would be in the running for 1st place. If you can figure out what tips would help others "really sail thru chemo" like you, please post. Know you do a lot of exercise....drink lots of fluids....have a great attitude.....and sounds like you had a lot of healthy habits to begin with. At the same time, realize with the same chemo treatment plan, there is a range of how one responds.......no matter what one does or thinks. ( But thought it would be interesting to hear from Sandra her thoughts on sailing thru chemo. ) Acknowledging the mental challenge you mentioned. Sounds like you have a good radiation oncologist who is recommending to include radiation therapy as part of your treatment plan. You mentioned you had the genetics counselor visit but there is some question of the test being done. This is most likely a repeat.......but if want to show your providers/genetic counselor the info from the USA............ If you need the reference for BRCA testing that was previously posted on the forum, here's the link: http://forum.tnbcfoundation.org/very-important-news-re-tnbc-brca-testing_topic8458.html?KW=BRCA (Disregard if already done or not helpful.) Sandra, have seen many of your posts.....you are so generous in your sharing.......your posts are helpful and uplifting.........thank you. With caring and positive thoughts, Grateful for today....................Judy |
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SandraB
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Joined: Oct 29 2011 Location: Australia Status: Offline Points: 130 |
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Posted: Jan 19 2012 at 5:21am |
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Hi Judy,
thanks for taking the time to write. I really do appreciate it. I was thinking about your post while I was walking the dogs tonight. I too have wondered why I am finding this so easy, physically. I am fit and healthy, that's true. And that goes a long way. But I think another reason I have done so well is that I tend to think everything would/will be okay. I remember being told about the side effects of the axillary clearance. I thought I wouldn't have any problems - and so I didn't. I remember being told about the side effects of chemo and again, I figured I wouldn't have any problems and I haven't *knock on wood*. Maybe it is denial, but hey, it works for me. I don't dwell on any of the physical symptoms and I just continue to live life the way I did before BC. So I would say exercise, water, a healthy diet and a buoyant and pragmatic approach to life is what is seeing me through.... I did get the test for the mutation. The genetic counsellor said given my age and the triple negative diagnosis, they were always going to do it. I don't think I have it though. There is no family history whatsoever. My grandparents and their siblings all lived into their 80s and 90s. I think my cancer is one of those sporadic cases... but I'll know more come Feb when I get the results. The radiation oncologist isn't holding back on treatment, that's for sure! My neck, supraclavicular, axilla, breast... all getting irradiated. 6 weeks of therapy there. It is a long haul. I tip my hat to all the men and women who get through this and to the ones who are in some kind of treatment for the long term. I really enjoy your posts Judy. You're always so quick to respond to posters and offer well considered information and support. You have no idea how often your posts have made me smile and for that, I thank you. Be well, Sandra
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Dx 09/2011 TNBC BRCA 1 & 2 -
T2 2.5cm N1 3/29 nodes. Lumpectomy & ALND 10/2011 FEC-D 11/11 - 03/12 Radiation finished 05/2012 |
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Dolphinlove84
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Joined: Jan 19 2012 Location: San Jose, Ca Status: Offline Points: 5 |
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Posted: Jan 19 2012 at 1:44pm |
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Hi everyone, my name is Miya. I was just diagnosed with stage III tnbc on friday. I met all my doctors yesterday and I am begining the first of many tests and scans today, (ekg, pet, mri ect). Its all kinda overwhelming. Oh yeah Im 27, so I am having genetics test done as well. Doctors cant seem to figure out why this happend to me so early and so advanced. Is anyone else on this blog in their late 20's? I am new to bloging. Never really had the time, but I am told I will have a lot of that for the next several months, lol.
Miya
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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: Jan 19 2012 at 4:00pm |
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Miya, there have been several young women on this site. One gal, Heather,is listed on the page that has stories from some of our members. She would be a good person to contact.
Take care...you can do this! http://www.tnbcfoundation.org/spotlightstories_heather.htm Edited by krisa - Jan 19 2012 at 4:02pm |
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SandraB
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Joined: Oct 29 2011 Location: Australia Status: Offline Points: 130 |
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Posted: Jan 19 2012 at 4:10pm |
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Hi Miya,
it's so overwhelming, I know. But Krisa is right, you can do this. Once you get started on treatment you will begin to feel better. Hopefully you can find some other girls in their late 20s or early 30s to talk to... How did you find your cancer, if you don't mind me asking? Cheers, Sandra
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Dx 09/2011 TNBC BRCA 1 & 2 -
T2 2.5cm N1 3/29 nodes. Lumpectomy & ALND 10/2011 FEC-D 11/11 - 03/12 Radiation finished 05/2012 |
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Lee21
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Joined: Dec 22 2011 Location: Michigan Status: Offline Points: 752 |
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Posted: Jan 19 2012 at 5:38pm |
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Miya,
Everyone has their way of dealing with a new dx of BC, especially TNBC. I don't presume to know what works best for you. For me, I needed to find out as much as I can from respected sources about the disease, prognosis, treatment and lifestyle changes. To this end I have posted a number of links to various topics under NEW MEMBERS -> OPEN ACCESS. Unfortunately, not everything there is open access (i.e. requires purchasing for $$) but at least you have the abstract to articles in the medical literature. Also the TNBC site has several videos that I found to be very helpful for getting "acquainted" with TNBC. You should also think about second opinions and clinical trials. There are others on this site much better versed with clinical trials and how to access the information (the major one is http://clinicaltrials.gov/ ). Second opinions generally are covered by your insurance but be sure to check. I recently had a second opinion at an out-of-state comprehensive cancer center that resulted in a change in treatment plan at the comprehensive cancer center where I am being treated. You will undoubtedly be hearing from Steve who is a wonderful patient advocate -- I will let him speak for himself. |
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12/9/11 @59,IDC,grade3, TNBC,3cm(MRI),SLNB0,stage IIA, BRCA1 variant
1/30/12 DD AC-T, 6/7/12 Lumpectomy, ypT1b(0.8 cm), 7/9/12 Rads x 30 11/9/12, clinical trial cisplatin/rucaparib, cisplatin-only arm |
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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: Jan 19 2012 at 10:45pm |
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Hi Miya,
You will get thru this. As you start reading about TNBC, know that most survive. When you start reading the forum topics, realize that many post on the forum when newly diagnosed and many post who have recurrences. Many of the long term survivors /thrivers are too busy with their lives to post. There are some forum topics/threads you might like to see: http://forum.tnbcfoundation.org/survivor-stories_topic7405.html http://forum.tnbcfoundation.org/survivors-needed_topic8221.html The initial treatment plan is very important for TNBC. If you are at NCCN (National Comprehensive Cancer Network) Cancer center, great. If not, you may want to consider a consult at one. The NCCN Cancer Centers: http://www.nccn.org/members/network.asp. You asked if anyone else on this blog/forum is in their late 20's? Thought in addition to responses you might get here on this forum topic, a new forum topic might help to find other members with same stage and age. See new forum topic/thread: http://forum.tnbcfoundation.org/stage-iii-age20s30s_topic9512.html With very caring and positive thoughts, Grateful for today.......Judy |
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proudgrandma3
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Joined: Jan 21 2012 Status: Offline Points: 4 |
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Posted: Jan 21 2012 at 9:41am |
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I am a 64 year old diagnosed jan.14,2012 stage 2 with lymph node involvement. am scheduled for bilateral mastectomy on Monday.wondering about doing a lumpectomy for staging and get chemo and radiation prior to mastectomy. any thought will be helpful.
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proudgrandma3
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Joined: Jan 21 2012 Status: Offline Points: 4 |
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Posted: Jan 21 2012 at 9:45am |
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I am a 64 year old with stage 2 triple neg scheduled for bilateral mastectomy for Monday. Should I be considering lumpectomy with chemo and radiation prior to mastectomy? I was thinking the recovery time would be shorter which would enable me to begin chemo sooner. As it stands, I am scheduled for double mastectomy with chemo to follow in 4-6 weeks depending on recovery time. Any input is appreciated. Thank you.
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