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CherylA 
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Joined: Nov 16 2007 Location: United States Status: Offline Points: 5 |
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 Posted: Nov 16 2007 at 5:44pm |
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Good evening ladies.
I just learned of this site today while doing a Google search on TNBC. I was diagnosed with this Feb 06 (stage 1, grade 3), had a mastectomy and did A/C for 8 treatments and then 33 sessions of radiation. I thought that this was totally behind me. Yesterday - not even 2 full years later, my oncologist told me that my CT scan shows nodules on my liver, lungs and behind my sterum. I am a 40 year old black woman. I was told that I was triple negative in 06 and did not know what it meant. I actually thought that it was a good thing. The fact that it doesn't feed on hormones is good, right??? After reading the Redbook article I got worried. I have been complaining of pain in my chest for months now (and told it was costochondritis brought on after my surgery), only to read that a woman in the article had been complaining of the same thing - only to later learn that her cancer had returned and spread to her lungs, liver and chest wall too. I made it through the 1st diagnosis pretty well but don't know if I can do this again - or put my kids through this again. I am glad to find this site. Thanks for letting me ramble. |
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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: Nov 17 2007 at 7:14am |
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Hi Cheryl and a very warm welcome to you.
I am so very sorry to hear after all you've been thru that they are seeing some nodules on your CT scan. When will you be discussing this with your Onc so that you can find out what is going on or do you know what they want to do? Could the nodules be something innocent??
Triple negative is a good thing in the respect that it responds so well to chemotherapy and there are some new good ones coming out, the platinums which may do even better.
I haven't had mets but have had bc twice, it is very numbing to hear it is back.
Maybe after you talk with your Onc and see what they have in mind you can make your decisions from there. Not having mets I am not a good one on advice here but personally if mine comes back again I would go with all the big guns I could find.
Let us know as you learn more about your situation and please vent anytime,
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Stage 2 2003
Stage 1 2007 BRCA 1+ |
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CherylA
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Joined: Nov 16 2007 Location: United States Status: Offline Points: 5 |
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Posted: Nov 17 2007 at 7:31am |
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Pam,
Thanks for the welcome. I have a liver biopsy on Tuesday but my Oncologist seems pretty sure already that it is cancer. My tumor cell count (seen in my blood tests) has steadily been going up since March and she even said that if the biopsy says that it is not cancer, she is not sure that she will fully believe it. I will check back in after the holidays once I get the results. Again, thanks. It is good to know that you all are here. Cheryl |
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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: Nov 17 2007 at 7:57am |
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Cheryl yes do check in with us after the holidays and let us know about your results on your liver biopsy.
The strangest thing happened to me earlier this year while going thru bc treatments. My CT showed 3 lesions on my liver, I went back for a biopsy and they couldn't find them! They said they just knew they were there and they don't go away. It was a very scary time for me and I'm more baffled than ever since nothing else was ever done. Did they give me the wrong test results? They said no. So the thought is in my head, are they there or not?
I wish you the very best of luck and hope this all turns out to be nothing.
You have a wonderful Thanksgiving.
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Stage 2 2003
Stage 1 2007 BRCA 1+ |
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shellieh51
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Joined: Oct 10 2007 Location: United States Status: Offline Points: 218 |
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Posted: Nov 17 2007 at 9:32am |
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Where can I find the tumor cell count on my blood work? Just curious since I have every blood report since this ordeal started. I am now on 3 month maintenance with my onc.
Take care.
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dx 11/6/2006 1.5cm IDC, Gr3, TN, BRCA-, lump, partial breast rads 1/2007, 4 AC, 12 wkly Taxol. Completed tx 8/2/2007. NED 12/2007. Malignant parotid tumor 4/2008. Clear head 4/09 & bones 11/08 -
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poookyquilting
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Joined: Oct 04 2007 Location: United States Status: Offline Points: 45 |
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Posted: Nov 17 2007 at 10:33am |
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CherylA,
I'm so sorry to hear that you have had a recurrence. I was diagnosed June 2007 and am currently going through chemo...A/C and Taxotere for six treatments and in February will start six weeks of radiation. I also had a mastectomy and ten nodes removed from under arm but only one was positive for cancer. I'm stage IIIA as my tumor was 5.3 cm by the time I had the surgery. And it is grade 3 triple negative. I hate to hear of anyone having this type of cancer. It is scarey. I pray that whatever treatment you decide on you are cured completely and quickly. You are in my prayers. Oh I'm 56 year old, grandmother of eight, mother of two daughters. Love spending time with my granchildren,. Especially twins. I have a set of 13 year old boy twins and my daughter (their mom) just gave birth six months ago to twin girls. THAT is SO NEAT. They are all fraternal but the girls look identical and have the most beautiful hair. The four are biracial and my daughter had very curly red hair and now the twin girls have curly (big curls) brown hair and their brothers just adore them. That is what keeps me from crying all the time about this triple negative thing. You hang in there Cheryl. You are in my prayers. jan from Michigan |
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CherylA
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Joined: Nov 16 2007 Location: United States Status: Offline Points: 5 |
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Posted: Nov 17 2007 at 11:34am |
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Shellieh-
To be honest with you, I didn't even know that tumor cell count was something that I was having checked until a few months ago. It turns out that when I was going in for my routine check-ups with my oncologist and they were drawing blood, they were checking this count. They also refer to is as "tumor markers". They watch this count to see if it stays the same, goes up, or goes down. I've been told that sometimes the count can increase with stress levels or during different times of the year. But after the change, it should go back to whatever your "normal " level is. The problem with me is that mine keeps going up and up. If they had not been checking this, I would have no idea about my nodules. This count is what led them to suggest my CT scan. I have no symptoms and had no pain - other than in my chest and I thought that was due to the mastectomy. Ask your Onc. about tumor markers when you go back. Cheryl |
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CherylA
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Joined: Nov 16 2007 Location: United States Status: Offline Points: 5 |
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Posted: Nov 17 2007 at 11:37am |
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Jan,
Thanks so much. I will be praying for you as well. Again, I am so glad that I found ALL OF YOU!!! Cheryl |
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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: Nov 17 2007 at 3:37pm |
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Cheryl,
I am so sorry to hear about your reccurance. I know it must be difficult to think about going through this again, especially if your children are young. I have never had tumor markers or a cell count done.. Since joining this forum last month I will have a long list of questions and discussion with my onc next month during my bi-annual check.
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gayns
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Joined: Nov 17 2007 Location: United Kingdom Status: Offline Points: 3 |
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Posted: Nov 17 2007 at 11:53pm |
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Hello, I'm 37 yrs old and from the UK. I have just found this site and am finding it very useful and positive. I was dx with trip neg in March this year. I had chemo first, followed by lumpectomy and 10 lymph nodes removed (all clear) and will finish my 6 weeks of radiotherapy on Dec 10th. I have been doing very well with my treatment and have been working all the way through except for 6 weeks after my op. The main problem I have at the moment is I fractured my elbow 2 weeks ago so can't drive to my daily radiotherapy appointments, luckily friends are helping out but I'm sure they'll get fed up with me soon. Have appointment in Dec to discuss follow up treatment, I feel fine all the time I'm not at hospital but as soon as I go for appointments all my fears and worries about reoccurence come back.
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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: Nov 25 2007 at 10:57am |
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The week before I go to my Oncologist I go in for a blood test draw and then we discuss it at the appointment. Evidently they work most of the time but this February I had just had mine checked, all was evidently ok and when I got my mammo I had another tumor so it makes me weary, sort of like those false positives we get sometimes on other tests. This was just a strange thing that happened to me, I don't know how often this really happens or why something didn't show up. I guess the main thing is to stay on top of what is going on with your body, be your best advocate and pay attention to your paperwork.
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Stage 2 2003
Stage 1 2007 BRCA 1+ |
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chaya
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Joined: Dec 17 2007 Location: United States Status: Offline Points: 24 |
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Posted: Dec 17 2007 at 11:12am |
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Dixiegal - thanks for the tip about drinking water for chemo - never read that before.
Hi guys - ultimate newbie here. I've just been diagnosed and haven't even have my lumpectomy yet - just the biopsy. The tumor is small - .5cm - but it's grade 8 and triple-negative. They don't think it's spread to the lymph nodes yet. So far I've met the surgeon and radiation oncologist - I meet the oncologist this Thursday. I was told that a lot of oncologists aren't up on how to treat triple negative. So how do I know if I'm being given the right information when I meet with her on Thursday? Are there special pointed questions I can ask? It also seems like they have the wrong information about who gets this thing. Like some of you, I'm white and post-menopausal. Good to know I'm not the only weird one. Glad I found you - so much information and so little at the same time. |
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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: Dec 17 2007 at 12:08pm |
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Hi Chaya and a warm welcome to you. I'm so sorry you have to go thru this but you have found a good place to be for support, questions, venting, crying whatever you would like.
Yes drink plenty of water and rest during treatments!!
When I was diagnosed this year I did some research online to see what
the newest meds were available so when I saw my Onc I felt like I could ask questions as to their plans and what they thought of what I had learned. This made me feel alot better to be armed with what was out there for triple negs and what seemed to be working.
Please do make a list of any questions you might have, take it with you, so that you can better understand your treatment plan.
I am also white and post-menopausal, there are several on this board.
Although it is more common in younger african americans and hispanics it also affects older white women. We are just a smaller percentage from what I can gather. Alot more attention seems to be put on triple negative cancer now and that's good thing!
Look around this board, you will find lots of valuable information and keep us posted on your doc visit,
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Stage 2 2003
Stage 1 2007 BRCA 1+ |
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CarynRose
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Joined: Aug 04 2007 Location: Robbinsville, NJ, USA Status: Offline Points: 960 |
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Posted: Dec 17 2007 at 2:07pm |
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Chaya,
Welcome to the club no one wants to join. I am white, but I got my cancer at 42, pre-menopausal. I'm also BRCA1+ and 80% of us BRCA1's are also triple negative.
Are you familiar with the BRCA mutation? One in 40 Ashkenazi Jews have this mutation that increases your lifetime odds of getting breast cancer upto 87% and ovarian cancer up to 50%.
I wish you an easy surgery and no more cancer problems.
All the best,
Caryn
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Orig dx 6/03 - St.2a, IDC
gr.3,0 nodes, TNBC/BRCA1+ 7/07 St 4 mets to nodes/lungs. PACA/Rads NED 11/07-10/08 Lepto mets 10/08 Rads for 4 brain tumors 4/10. Leptomets return 6/10 |
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chaya
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Joined: Dec 17 2007 Location: United States Status: Offline Points: 24 |
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Posted: Dec 18 2007 at 7:19am |
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Caryn -
Thanks. But you know a club no one wants to join is better than no club at all. What I've already read on this group will help me a lot when I see the oncologist on Thursday. Though what I want to do is not clear, at least I know what to ask. I am also Ashkenazi but haven't been tested for BRCA because there is no other breast cancer on either side of my family. Is this something I should do? Does knowing this make a difference in treatment? |
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ruth
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Joined: Sep 27 2007 Location: United States Status: Offline Points: 16 |
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Posted: Jan 15 2008 at 12:27pm |
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Dear Lorainne,
We are twins, both being 72 years old. I finished my chemo on November 23rd. I did pretty well with it and carried on doing all I usually do. I had two trips to the emergency room with high fevers and lost most of my hair. At the moment my hair is coming in. On reflection. I did not realize that I felt bad during the chemo months. Now that I am my old self, I realize the aches and pains must have been caused by the chemo, but I still went and swum my quarter of a mile three times a week and did my exercises as usual, at a slower place. I was extremely lucky as a friend of mine with the same chemo treatment was quite sick and put on lots of weight. I lost a couple of pounds. The funny thing, my nails have taken on a new look. This started to happen, at least three weeks after I finished with the chemo. The whites are taking over. I hope you are as lucky as me. Good Luck.
Ruth  Edited by ruth - Jan 15 2008 at 12:28pm |
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CarynRose
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Joined: Aug 04 2007 Location: Robbinsville, NJ, USA Status: Offline Points: 960 |
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Posted: Jan 15 2008 at 2:33pm |
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Chaya,
I'm sorry that it's been a while in answering your question. I didn't see it until now.
Regarding BRCA -- it is not uncommon for people to discover that they are BRCA positive without a known family history. For instance, BRCA can be passed to you from your father's side, but because it is less likely for men to get breast cancer (say, with a BRCA1+), it might appear that there is no breast cancer.
In my case, I got it from Dad. There were very few women in his family who survived the Holocaust and those who died in the war died young. Those who made it the US did not get breast cancer, though my aunt died of pancreatic cancer and her son has malignant melanoma. Each of these cancers has been noted to occur in BRCA+'s. But, no breast cancer. When we discussed it further, my dad remembered that his father's sister did have breast cancer at a young age and after a mastectomy, did well (until Treblinka).
In answer to your questions: Yes, knowing your BRCA status can affect your treatment. A positive status means that the chances of recurrence is higher and might encourage you to go more aggressive in your treatment. It would also give you a heads up to watch for ovarian cancer as BRCA means a higher occurance of that disease too.
It is also important to know so that you can inform other family members. After I was tested, so were several cousins. Half were BRCA+ and half weren't. Those who were could make decisions BEFORE they got cancer about possible prophylactic measures (such as surgeries or heightened surveillance).
I hope this helps you, but if you want more information, a great website is www.facingourrisk.org. The organization is called FORCE -- Facing Our Risk of Cancer Empowered and you can find A LOT of information genetic cancers as well as get incredible support from those who post on the message boards. No question is silly or dumb.
Best wishes,
Caryn
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Orig dx 6/03 - St.2a, IDC
gr.3,0 nodes, TNBC/BRCA1+ 7/07 St 4 mets to nodes/lungs. PACA/Rads NED 11/07-10/08 Lepto mets 10/08 Rads for 4 brain tumors 4/10. Leptomets return 6/10 |
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Cookie
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Joined: Feb 05 2008 Location: United States Status: Offline Points: 70 |
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Posted: Feb 08 2008 at 7:11am |
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ALL MI LADIES: I live in MI too, I am in Saint Clair Shores, just north of 11 Mile off of Jefferson. Where do all you MI ladies live? Also, who is your onc and why? I am still in AZ but need an onc in MI. I have been looking on-line at U of M doctors. Would like someone fabulous and knowledgable about 3- closer, if possible. It is so hard finding the right doctor. I really like the one here in AZ, he is very, very aggressive. Cookie |
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Cookie
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Joined: Feb 05 2008 Location: United States Status: Offline Points: 70 |
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Posted: Feb 10 2008 at 9:06am |
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English Jan:
Just read your e-mail about not having any insurance and having to pay for your treatment yourself. You don't have to pay for your treatment. If you cannot afford it, contact the companies of the drugs you are receiving, they will give you the medication free of charge. You'll have to fill out a form, but it is no big thing. My elderly parents were living only on social security and I got them all of their medications free! All free! So, contact the companies and you too should be able to get medication free.
Cookie
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