TRIPLE POSITIVE GROUP
Comments
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dianamaps - welcome, sorry you are here.
lago - congrats on the 1 year ned. I have a ned question - I had an AND 5 weeks after my BMX with a positive node - do I start counting my nedness from then? That is the last known cancer that I had.
tonlee - sorry about your cousin, so bizarre about the similarities.
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dianamaps - Many of us did taxotere as part of 'TCH'.0
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That's a good question Special K. It was my BS that told me my NED date started with my BMX. I think you'll have to ask the experts with the MD after their names
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Thanks for the input ladies. Looks kinda like a 50/50 split on it. I will see my gyno soon and ask his input than probably find a specialist for a final opinion upon making decision.
TonLee - sorry to hear bout your cousin. I too was a heavy 'gymrat'. Mostly wieghts tho. I miss it.
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TonLee - sorry about your cousin, but she is so lucky to have you!
Lago - Congrats on one year! The other day, I had to say that it was over 16 months since my diagnosis, and that sounded weird to me!!
YAY for milestones!!! Also, anyone with facts about a hysterectomy increasing survival rates?
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TonLee - sorry to hear about your cousin! It's so wild that you have the same diagnosis. I'm sure you're be an invaluable asset to her as she begins treatment.
So it appears my period never got the memo that I should not have to deal with a period after chemo (at least for a while. It's only fair, right?). I had one period on chemo, and now the second one has started since chemo. Weird since my PCOS usually made me very irregular - like twice a year or so. I'm starting Tamoxifen tomorrow. That should stop menstruation, right? I'm not sure how aggressive to be from a gynocological standpoint. I know I have PCOS and we had infertility issues because of that. But weight loss helps with PCOS and I have lost around 60lbs over the last year. Plus I just joined Weight Watchers - I start tomorrow.
I guess I'm wondering what my premeno triple positive sisters would do. I see on BCO that women who don't have periods on Tamox have "better outcomes". That makes me anxious.0 -
Thanks everyone...I think she'll be ok eventually...I plan on helping her with as much as she can stand...lol
Pej...My OB Onc said I should not have any periods on Tamox. If I do, to call her and come in for an exam. The first thing she did was give me a Transvaginal Ultrasound to establish a baseline of where my uterine lining is, etc.
After I read here that some women still have periods on Tamox, I asked her about it. She said it is "unlikely" but hey, anything can happen. And if it does, for me to wait until it's over, and then make an appt to see her.
I wouldn't stress about it. It's just another one of those things you can't control.
That's my experience so far. I've been on Tamox now for about 5 months....I think! haha. I stopped counting months.....2016..that's my aim right now
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Tonlee so sorry about your cousin, like everyone says, she is so lucky to have you as an advocate and supporter...maybe she will join these forums to help her through as well.
dianamaps welcome to this group I live just up the road from you on seneca lake
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Sorry TonLee. What a blessing she has you to turn to!!
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Tonlee - that is terrible news. So sorry when I hear of new diagnoses.
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Tonlee So sorry to hear about your cousin but she has the best resource and support with you on her side.0
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Thanks everyone. She met with the BS yesterday....she's trying to decide between lumpectomy and MX right now....
I was super impressed that her surgeon is up on the latest studies. Told her they'd only take the SNs and if positive, radiation to the axilla, that for the most part they "leave the axilla intact" now.....amazing how things change in just a year!!
I told her about the boards, and she will likely be on here at some point. Right now she's on information over-load and still digesting the diagnosis.
Her daughter (my second cousin) had thyroid cancer a year or so back. I think for our family, the thyroid and cancer is linked. And to get BC in the same spot, same size, same cancer.....am I wrong to think that is stuper strange?
Ok, off to Herceptin....have a wonderful day beautiful ladies!!
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TonLee - Didn't you have to fight hard not to get axillary dissection? Nice to get some confirmation that you made a good choice.0
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Tonlee and Omaz,
Yes, I read about - I think at ASCO it was said: « axillary dissection not more, but rads to axilla only«. Nobody was referring what should that mean for LE. Years ago they haven't given radiation to axilla to avoid possible LE. Who knows?
Greetings
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TonLee- So sorry to hear about your cousin. Hugs to her. I agree it is strange for it to be in the exact same place and same type of cancer as yours. Sure makes you wonder what is going on there. I can only imagine that it is very emotional for you to have someone you love be diagnosed with this sucky disease. I hope the two of you can be strong together for each other.
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Thanks Christean,
She's an amazing woman. One of the two first female firefighters hired in Cincinnati, and the first female in the city's history to retire from the Fire Dept. She's a tough cookie. So yeah, really stinks to see it happen to her.
Yes Omaz. It is amazing and so reassuring to know that the extrapolations I made from studies a year ago are now coming to fruition. I imagine in a couple years axilla dissection will be the exception and not the standard. It already is in some centers. Unless MRI shows massive lymph involvement, they're not taking her axilla....amazing stuff!!
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We live just outside Cincinnati in Northern Ky. - hubby works in Blue Ash
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Thank you all for this invaluable info you offer here. I lurk often and usually find what I need and find you to be a wealth of support and knowledge! I am approaching my last tx to be followed by mx. Can anyone speak to the following: port removal for bi-lateral mx (neo-adjuvant chemotherapy), risk of recurrence in non-cancer breast (bs and onc say no increased risk) and any advice about aux node dissection. thank you for your input!
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ah2bthin I assume you are doing herceptin for a year since you have the identical stats as me. Don't you still need your port for that? I will have my last herceptin this Tuesday but will be keeping my port for 2 more years. My onc prefers we do that because once the port is removed it can't go back in the same place. I only need to get it flushed every three months. Granted if I want to get it removed I can but for now I'm keeping.
I also got a bmx because there was some suspicious stuff (ended up being LCIS) in the other breast. My MRI didn't show any node involvement but with tumors our size they usually removed at least level one axillia. My BS removed the first 10 nodes on my cancer side and did a SNB (4 nodes on the other. He would have taken more nodes if he got in there and felt/saw a problem. I'm sure he would have taken them all if they saw something on the MRI or he felt something. Ended up my nodes were all clear.
The new research that is out that says no need to remove more than the SNB nodes is for much smaller tumors than ours but I would still discuss this with your BS. I do have LE in the 10 node side. Living with LE is not as bad as I though although I would have preferred no LE.
I have read once you have breast cancer you are at increased risk for getting again. It's not 100% but something like 4x more likely. So if your risk was 1% before it goes up to 4%. That doesn't mean you must do the bmx. I know if I didn't have anything in my other breast my BS would have recommended I not remove healthy tissue. Note this would not be a recurrence but a brand new occurrence. They will catch it quickly since they will monitor any woman who has had breast cancer closely. Personally I'm glad to be rid of both of them. No way would I want to go through this again.
So I quess my question is do they think it's in your nodes? Are you getting radiation after surgery?
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Curious, TonLee - with as much lymph involvement as I had, do you think my surgeon should have left well enough alone? I had a long talk with her beforehand about leaving my lymph nodes intact (I had not done an MRI, and we thought they were clear). She convinced me that if there was cancer there, I should have them out. She just retired (can't be a day over 55), and was the head of breast surgery at Brigham. She oversaw the training of all the breast surgeons at Harvard Medical School. Brilliant lady, from all I can gather.
After the surgery, she was a bit shaken by the extent of the cancer she found. She said the lymph nodes she removed were no longer distinguishable as lymph nodes, the cancer was so advanced. Wouldn't those cancerous nodes have served the same function as the original tumor, as a "mother ship" for launching metastatic landing parties? Or do lymphatic metastases not migrate? Either way, I can't imagine wanting to still have twelve additional cancerous tumors in my body.
Sorry - I'm not challenging you, but I'm really trying to learn.
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windlass as I said in my last post not removing lymph nodes was only studied in smaller tumors. It's still only one (but larger) study. They still need to do more studies before it becomes standard care.
Here are 2 news articles reporting on this study:
http://www.nytimes.com/2011/02/09/health/research/09breast.html?pagewanted=all
http://www.chicagotribune.com/health/la-he-breast-cancer-lymph-nodes-20110221,0,988840.story
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I had surgery almost three weeks ago, not sure how many lymph nodes they removed, but found cancer in two of them. Did not show up on ore surgery MRI and bs thought they looked clear right after surgery. I had neoadjuvant chemo. We knew there were two lymph nodes with cancer pre chemo. Now I'll never know if there were more or not. Wish I did.
I was told my disability insurance was approved through all txs. Does anyone know if this includes Herceptin or if it just covers rads?0 -
kay1963 - what kind of disab ins are you using? From work, or gov?
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Work, unum insurance. I don't think I would quify for Ssdi.
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kay1963 you may never know if it was in more nodes but because I had surgery first I don't know if the chemo even worked. Pros and cons doing it either way. Bottom line is there were no cancer showing in those nodes.0
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windlass - Before surgery I was worried about node removal. My best friend crabbed at me and said 'do you really think that you want to leave cancerous nodes in there?' That kindof of calmed me down and I thought that if they found a problem I would have wanted them out, but not out just to take them out which they do sometimes (hopefully not so much anymore!).
lago - I have heard now that for some people the port can go back in the same place. Perhaps it depends on individual anatomy.
ah2bthin - If you are having the year of herceptin I would consider leaving the port in. Removal surgery is pretty easy so you could do that later after you finish the herceptin. I think, but am not totally sure, that the anti-estrogen treatments (tamoxifen and AI) reduce the risk of new cancer in the other breast. That is why they have trials of taking them in women who are at high risk but haven't had BC.
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Thanks Lago. That puts it in a little better light for me.
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Thanks lago and omaz for your responses. I don't want to have the port removed because I will be continuing with herceptin. My onc says it will need to be removed if I have that breast removed. I guess because of placement. I haven't read of anyone else encountering this. I also will be on tamoxifen for five years but not sure when that will begin. I guess after surgery. I want to be able to present a good case to my bs that would encourage her to do the bmx since I hear it is not her first choice. I am awaiting my BRCA results. Thanks again!
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kay1963 - I had short term disab that I paid the premium for that ran concurrent with 12 weeks of FMLA (I exhausted FMLA with 5 successive surgeries), then long term disab (which covered chemo, I did not have rads), which was company paid, that ran concurrent with an Americans With Disabilities Act leave of absence. My BS signed the FMLA paperwork and my MO signed the ADA paperwork. There are fraud warnings on both kinds of paperwork, so the docs who sign off have to believe that you can't work, rgardless of the treatment type, and have to certify with their signature. I have heard of some disab ins. companies that will come back and say you are capable of working through some treatments - it depends on how the ins. company defines treatment and disab. I was quite surprised when the long term ins. people called me and encouraged me to apply for SSDI, apparently I could qualify even though stage II due to age. I returned to work and did not apply for SSDI, but resigned recently because of more surgery and treatment.
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ah2bthin - I am still amazed at the number of decisions that we have to make during treatment. When I was dx'd I knew very little about BC. Coming here has helped me so much. Best wishes!!0
