QuoteReplyTopic: Sigh . . . another new member :-( Posted: Mar 20 2009 at 10:24pm
Hello all:
Unfortunately my wife has just been diagnosed with TNBC. Luckily I've found this site and now know more than I ever wanted to know about BC & TNBC. I'm more of the online person in the relationship so you'll probably see me on here more often than her.
Both my wife's mother and grandmother had breast cancer, so to some degree we were prepared for the diagnosis (well, as prepared as you can be for such horrible news), so we've been dealing with it OK emotionally. A few breakdowns here and there, but overall OK I would say.
At any rate, we are in a bit of a weird situation treatment wise, and I was hoping I could get some feedback on my wife's treatment thus far. I realize that forum advice is not strictly medical advice, but we are happy to get as much information and perspective as possible.
Here is the timeline thus far (she is 34 yo):
Found lump during self exam (late February)
3/5 - Clinical exam including mammogram (negative) and ultrasound (positive)
3/6 - FNA confirming carcinoma
3/9 - Meeting with surgeon to discuss options. She had 2 tumors, so a lumpectomy was not a good option. Decided on a mastectomy (skin sparing) with immediate reconstruction).
3/9 - MRI to confirm extent of cancer in breasts.
3/9 - Blood drawn for BRCA genetic testing (results not available yet, should be in a few weeks).
3/11 - Core needle biopsy to rule out false positive.
3/12 - Surgery (mastectomy) with sentinel node biopsy. All nodes (9 in total) returned negative.
3/20 - Discharged from hospital, drain removed.
So, that's it for treatment thus far. She is going to get the full pathology report on Wednesday (3/25), but we know a bit now:
2 tumors, the larger being 2.2 cm
Stage 2a because of tumor size, with no lymph node involvement
1 tumor was grade 3, 1 was grade 2
1 tumor was ductal (the larger), the other was lobular
Cancer is triple negative
One of the complicating factors is that all treatment thus far has been in Hong Kong, where my wife has been doing research. The doctors and facilities here have been great and very proactive. But, we are from the bay area of California, and we're heading home soon (as soon as my wife is cleared for air travel). She has 2 more surgeon follow up visits scheduled to make sure the wound is healing OK before she leaves Hong Kong.
We considered waiting for surgery, etc. til we returned home, but my wife does not like medical procedures, needles, etc. and wanted to get the cancer out ASAP w/o having to have a bunch more diagnostic procedures. I don't blame her.
As I've been reading various threads and profiles on the site, it seems as if my wife's treatment has been a little unorthodox perhaps? Maybe because we did not know of the TNBC diagnosis until after the mastectomy. She will be starting chemo soon after she returns home. From what I've read, it seems that most folks with no node involvement and a mastectomy do not have radiation, but it appears as if some of you have? The surgeon has said it is not necessary, but I guess we'll wait to see what the oncologist back in CA says.
Some random questions I had:
She's not had any bone scans, CAT scans or PET scans. Is this something she should get back in the states?
How long is the period between mastectomy and chemo? From what I understand 3-6 weeks?
She's very anxious about chemo. It seems like the anthracycline & taxane (dose dense) is fairly standard for TNBC (at least in her relatively early stage). What is the normal duration for this? Is it 16-18 weeks (as I understand)?
Would radiation be normal in her case?
Thanks for reading this far. Any answers, insight, comments, etc. are much appreciated.
Sorry to be in the TNBC club but happy to have found you folks and this site, Jason
Sorry you and your wife have to go through this, but you have found a great place to find support and information. As you have probably noticed, the group here jumps in and shares experience and insight.
Like your wife, I was triple negative, multi-focal and node negative (stage 2b). That was December 2005 and I am blessed to be disease free more than three years later. I had surgery first (mainly because I moved quickly and didn't see oncologist until after surgery). I ended up needing radiation because I had close margins ... if your wife's margins were clear and had a mastectomy, it is my understanding she wouldn't need radiation.
I also had dose dense chemotherapy, AC for four cycles (every two weeks so 8 weeks), followed by taxol every two weeks for an additional eight weeks. I think some docs prescribe the taxol frequency differently, but that's what I had. I tolerated my treatment very well. They have great anti-nausea drugs now and while its no picnic, the treatment for me was tolerable (especially considering the alternative).
If the BRCA testing comes back positive, which it may due to the family history, you will be facing more decisions. While it seems overwhelming, take it one step at a time and know that the only way to get to the other side of this is to march right through the middle of it.
I had both a PET and MUGA scan prior to chemo. The PET let's the doc know if there is cancer anyplace else, plus gives a baseline for future scans. The MUGA looks at your heart function prior to the chemo drug adriamycin. And, my chemo started about 4 weeks after surgery.
So, in summary, you seem to have done everything right up to this point. While some get chemo first, I don't believe there is any proven long-term survival advantage to doing that unless they knew her tumors were very large. In my case it likely would have shrinked the tumors eliminating the need for radiation, and many like knowing if their cancer responded to the chemo (if chemo works, you can see the tumors shrink or disappear). On the flip side, you can travel home knowing that the cancer is out of her and now you will work toward making sure any "stray" cells out there get taken care of as well.
One note before you get on a plane: Check with your surgeon about lymphedema risks and flying. He/she may suggest wearing a compression sleeve on the plane. No one told me this until after I was hauling a suitcase around an airport and flying with no sleeve. My arm swelled and ached pretty badly. Eventually, I was able to stop using the sleeve, but I used it religiously in the year after my initial problems.
All the best for you and your wife. And remember, one step at a time.
I concur with Cathy's reply and was on a similar course of treatment, etc. after being diagnosed in July of '08.
I also had a masectomy first, followed by treatment. My treatment consisted of 4 treatments of AC every two weeks, followed by 4 treatments of Taxol every two weeks. My chemo treatment started four weeks after my surgery. It was no picnic but certainly easier to tolerate that I had imagined. I had 30 radiation treatments, but I was node positive and had close margins. I'm six weeks out of treatment and am feeling great.
During the four weeks after the masectomy I had a bone scan, cat scan of the abdomen which prompted an ultrasound of my liver (suspicious findings, which turned out to be cysts in my liver) and a muga scan of my heart. I would be surprised if your oncologist in the states did not do these tests before they begin her treatment.
The women on this site are a wealth of information and support, I know you will get all the answers you are looking for here.
Hi Jason and I want to say welcome but I am so sorry to read of your wife's diagnosis. We will be happy to help in any way that we can.
It sounds like to me you have had about everything done except I know many women have a CAT scan and/or bone scan to make sure the disease has not spread thru the body.
The Muga she would need to have before the AC because the A has some risk, small to none they say of damage to the heart so they will want to make sure her heart is strong and ok.
I will give you a couple of links regarding time frames.
I had surgery, bilat mastectomy in April 07 and didn't begin chemo until the very end of May so I was getting concerned.
Were both her tumors triple negative?
Be sure and get copies of all her paperwork. You sound like you are right on top of things so you have probably already done that. I believe your wife is very lucky to have a husband doing this research for her.
And yes, since she has had lymph nodes removed, she needs to be careful with the affected arm. She shouldn't be lifting anything I believe over 15 pds, no scrubbing, holding her arm up for a long time, repetitive movement. Those sorts of things can cause the lymph fluid to get cranky and it already is because of the surgery so she can end up with painful swelling.
Let us know how she is doing and if we can help in any way. Best wishes to you both,
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Wow, thanks everyone for the very helpful and quick responses. I have been a part of some great Internet communities over the years (granted for much more trivial subjects) and I'm glad we've found another one here. Of course I wish we didn't need it, but life is what it is, right?
My wife is happy with her care thus far (as am I), but I think it's very useful to get some validation from other folks going through the same thing. My wife is getting up to speed on things as well, but she is of course scared so she is taking things one step at a time. I'm trying to filter useful info to her without overwhelming her with doom and gloom.
She has not seen an oncologist yet, but I am glad to hear that she will likely have some more scans before chemo. As it is shaping up, she'll likely be seeing her permanent doc (oncologist) in the US right about 3 weeks after surgery, so assuming things happen relatively quickly, she should be starting chemo sometime shortly thereafter.
Thanks again everyone for your thoughtful and caring help in this crazy time.
Jason you and your wife will be in our prayers for a successful surgery and speedy recovery.
I sure hope you will keep us updated on your wife. You sound like you've got a pretty good grip on a situation that is indeed filled with fear and stress, hold strong best you can and she will get thru this healed.
You wife's treatment was almost right in line with my daughter Lori's. However, Lori's first surgery was to remove a "cyst", (radiologist apparently needs to go back to school), and that pretty much led to the mastectomy with a really good breast surgeon. Lori also had 2 tumors, and was node negative. Lori just wanted the tumor out, and said after that she finally "felt clean" once again.
Everything that all the other gals have told you is of course right on the money. They know Jason...they have been there...done that. Do make sure that she has all the test that she needs before beginning chemo. She needs a baseline so that if there are any concerns at a later date, they then will have something to compare.
Lori had almost 5 weeks between the mastectomy and the start of chemo.Her first cheom was August 10, and her last was day after Thanksgiving 2007. Then she had a month break and started rads.
Sounds like she has a winner with you Jason...and for that we all thank you. This journey will not end with the treatments, and she is going to need all your support for a very long time.
I am going to send you a private message now with my email address so that I can give you the directions for all the resources we have here on the site. Much too long to post It is already typed and ready to send.
Tell your wife that we will all be here for her and for you every time you post.
Nancy
Nancy
DD Lori dx TNBC June 13,2007
Lumpectomy due to incorrect dx of a cyst
mastectomy July 6 2007
chemo ACT all 3 every 3 weeks 6 tx Aug-Nov
28 rads ended Jan 2008
You certainly are on your way to have an appropriate treatment plan....having said that I think it is important that you factor in the characteristics of the lobular...triple negative is aggressive and lobular is sneaky. If your dear wife has a positive BRCA - then bilateral mastectomies, hysterectomy and bilateral salpingo-oophorectomy will take care of the areas the triple negative and the lobular migrate to. It is important to be very proactive regarding having baseline scans especially in the event of lobular - since lobular is difficult to detect and symptoms are dismissed as other causes, gastrointestinal for instance.
ILC is more likely than IDC to occur in both breasts — about 20 percent of women with ILC in one breast will also have it in the other one.
ILC is slow to spread outside the breast (metastasize). If the cancer does spread, it may show up in the gastrointestinal tract, the lining of the abdomen or the ovaries.
Please research the different delivery models regarding chemotherapy - the metronomic dosing (weekly) or the Livingston model is something the researchers are looking at for triple negative since the cells divide and split so quickly and are so aggressive (grade 2-3). I had the AC + T dose dense (every two weeks) for my protocol but it seems to be more common to have the Taxol weekly for 12 weeks (cuts down on side effects but not the dose).
Please ask any questions you may have and we will help you help your wife.
Thanks cg--- for the additional info on the ILC. I will make sure we ask about this when we meet her oncologist. I just looked through the paperwork again, and we have the preliminary pathology report that gives only a general report on the tumors. It mentions that the report with other tumor/cancer markers is to follow. So we should have that on Wednesday. The ILC was a bit smaller (1.7cm) and was grade 2. I will also start looking at the various chemo delivery methods.
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