TRIPLE POSITIVE GROUP
Comments
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Yes, I'm going to James Haley.
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But they are talking of consulting me o Gainsville or oncology. Im up in St Augustine now.. Recouping at my parents house. So, Gainsville will be closer. I am leaving in the morning for Tampa. I have 3 days of appts at Haley.
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Can you stay at the Fisher House? Or there is also an American Cancer Society Hope Lodge on the USF campus right across the street, free for cancer patients.
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Fisher house is full. But they pay for me to stay at the Embassy suites. The Va has been great. I've been followed by the breast clinic. I'm just hesitant about having my oncologist (even if in Gainsville-1.5 hrs away) so far away. I'm still navigating this confusing road.
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MsTori my advice is see if you can get a 2nd opinion with an onc that is closer. If you like the one that is further away then stay with that one. This is a really important jouney. If you stay with the one that is far away ask if it's possible to do your treatments closer to home. I also know that some women did their 6 tx at the treatment center but once chemo was over they got their herceptin at home. My NP asked if I wanted to get it at home. I laughed since I only lve only 5 miles away. No need for me to get it at home.0
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Lago- I will check that out. I will have to go through the social worker at the VA. They would have to fee base it out. Or I could go through my insurance. Thanks Lago. I just want to make sure I'm doing the right to. And that I like and feel comfortable with my oncologist.
I've got to go pack for the trip. I"ll check back in a bit. Thanks for all the advice. Your all a blessing. I'm sure I will have many more questions. :-) I don't feel so alone anymore.0 -
MsTori - A welcome to our group from me too! Ask anything.0
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Welcome msTORI--that word here is miserable for me to say. Anuway it sounds like u have pretty much knowledge in what u'r doing--good for u and Lago always has good ideas and all the other women know (Lago too) so many answers so u'r in a good place here.
Herceptin----I did have a full yr. (weekly) my muga was always the same--in the 70's somewhere so I went thru the whole thing and now I'm having some trouble with B/p, heart and kidney---don't know if it's from critically low electrolytes tho--could be anything all I know is no one knows for sure and I have more Drs. to see and more meds to take see that's why I never really asked alot of questions cuz when I started answers are kind of vague cuz no one knows what they'll find so I trusted them and didn't ask. That's why I say cancer is still a mystery--so until it is completely explainable why bother working myself up.
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Wow! Hi everyone! What a family. Sorry that we all have to be a part under theses circumstances. Thank you for the warm reception. I'm sure after seeing my doctors over the next several days, I will be reeling with questions. Haha!
Myself, risk factors: just turned 42, fibrous dense breasts, no children, I was a smoker(quit when diagnosed-feels great too!), weekend drinker when in my 20's but no alcohol now. Not a great diet- I skipped meals and but when I did eat, for the most part healthy. Here's one for ya- I'm a nurse and carried my cell phone around in the left breast pocket all day. That was my bc side. Not sure its relevant. High level of stress I didn't handle well. Was at proper weight and height. Only family hx is my aunt, who is triple negative and is going through chemo now. Oh, and first period before age 12.0 -
Tori I am a firm believer that high stress is one of the triggers. Every time I say that women start chiming in on their high stress, toxic enviroment, etc. job(s) they have/had.0
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Lago- This past year, my stress level has been through the roof with my job! I wasnt eating or sleeping properly because of it. One of the first questions I asked my doctor was if I caused this by all the stress.
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Mstori...get an inexpensive tape recorder and tape your oncologist appts. It will help as you forget a lot and a lot of info is thrown at you.
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MsTori your cancer has probably been around a lot longer than a year. I know HER2+ cancers grow quickly. I was told mine was very fast growing and probably started about 4 years ago. Seems more typical is 8-10 years (those that aren't as fast growing).0
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Tori: I was in NV when I went through my treatments and a small town outside of Vegas which was 1.2 hours from my oncologist. It worked just fine. She was so easy to reach via phone with questions and easy to get in for an appt. She also had a nurse who was johnny on the spot. Just want you to know that if you love that oncologist, the distance might not be as bad as you are thinking!
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mstori - I did not need to pop in on my onc at any point in the 6tx of TCH. I was only there at scheduled appointments. Generally you feel decent over the 24-48 hours following tx and the days 3-5 are the ones that you may not feel as well. Not everyone has all the side effects, so you may not have any that seriously impact you. If you have good contact with your docs, and can reach them if you need to, the distance may not be much of a factor. I am wondering about labs for you - do you have a VA branch near you that could do routine labs - I had a CBC weekly, this is why I am wondering.
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Fluffqueen-good idea! Thank you! I will def take my recorder.
Lago- I didn't realize that it could be there that long! Wow! I'm anxious to see my oncologist. I feel like I have only half the information at this point.
Arlene- I just wasn't sure how often I would need to be at the oncologists and if that would be a problem. I really think I will go with the one in Gainesville if I like her. It is about an hour and half away.
I'm going to sign off until tomorrow. Have to finish pulling things together for trip tomorrow. Thanks everyone. You all have blessed me so much. I"ll check in after I see my ps tomorrow. The tumor board meets Wednesday, so really waiting to hear what they discussed. :-)0 -
Oops! SpecialK- just saw your post. I do.. They have a local clinic here in town. So I can get my labs there. Thanks! I didn't think of that.
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mstori - good luck and safe travels!
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I gave up a boob and some ovaries. I'm not giving up anything else.
Ashla, lol, your legs should be a wider than your shoulders....put a chair, stool, Ottoman, coffee table, couch, whatever behind you...and take your butt down to almost touching it...that will save you if you fall, plus it ensures your doing the squat (Which is the sit down movement) the right way.
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Hi tori...sorry you are here...but, these ladies offer great support during this process. So you have come to the right place .
Arlene- I signed up for the study.0 -
Miss Tori,
I was also 42 when I got a uniMx. I chose a MX because I didn't want rads. I had a skin sparing MX with immediate reconstruction (ie TE placement).
Unfortunately my SN were positive. They wanted to go back in and do an axilla dissection (what they want to do to you.) I refused the axilla and chose rads once meeting with a radiation oncologist. Why? My risk of LE with axilla dissection can be as high as 50% 10 years out. While with radiation, my lifetime risk is below 10%. (Radiation Oncs have these stats).
So, I took radiation to the newly constructed breast, and the axilla. Everything turned out FINE.
It seems to me you have to weigh the increased risk of LE with possibly messing up your new boob (30% failure rate with tx and rads).
Whichever you can live with.
I'm athletic and rough on my arms, so LE is something that could really affect my quality of life. I can live without a perfect boob. (And it can always be repaired.)
Here's the thing. They are most likely gonna recommend rads. If they get in there, remove your axilla, and there are more positive nodes, you not only just lost your axilla lymphs (and increased your LE risk), they're STILL going to recommend rads ON TOP OF LOSING THE AXILLA!
It's a gamble. And Lago is right about getting a second opinion. Ask to see a Radiation Oncologist as well. Ask what radiation may do to your new foobs.
Good luck.
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Welcome tori like everyone else said sorry your here but we are A great bunch of ladies here and love to chat ask away we will all chime in
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mstori other than age difference your diagnosis sounds similar to mine. Although I had a lumpectomy. I got the full round of chemo + rads and am still doing Herceptin. It is not easy but I just made up my mind I'd have to put my normal life on hold and focus on treatment. I started Chemo in January and finished Rad's. 1.5 weeks ago. I still have low energy and at my last Herceptin had borderline low blood counts. It will be a long haul but if you stay positive you will get through it. Good luck.
Peggy
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hi ladies
on the subject of drinking...never much of a drinker, not even during my university days when everyone was into excessive drinking
i posted this question on the surgery thread...for those of you with young children (mine are 9 and 12, boys) who had a msx how did you explain your surgery to your kids? i have told them i am going to be in the hospital for 3 nights so they know i am having surgery but i have not given them any other info. With drains etc can i still "hide" this from them? I dont want to freak them out, have them worry about me as we are just starting to feel normal as a family again
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rozem - I would imagine that your boys don't really want a lot more detail than that at their respective ages, and yes, you should be able to hide the drains from them under your clothes. The drains loops can be pinned to the inside of looser fitting shirts. Just reassure them that you are going to be fine and they will take your lead.
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Congratulations Lago!!!!
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rozem - my kids are the same age but they are girls and I think that makes a difference in what they are comfortable hearing. I go for my BMX and reconstruction on October 1st as well! and I can't decide what to do with them. DH will be with me, parents will be there too. So I am trying to decide whether to have MIL come up and stay or I can take them to my bro/sil the night before since we have to be there so early.
They do know that I am having my breasts removed and will be getting implants but I know they probably truly don't understand all that's involved. Hell, I don't fully understand all that's involved.
I had to have a drain when I had my SNB site re-excised so they have seen that and wrinkled their noses and said "gross" 
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soltantio - I am BRCA negative
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Brca negative, BUT that is only for BRCA 1 and 2. That does not mean that other cancer genes aren't genetically transmitted, Only that the gene for transmission has not been identified. I have not read that Her2 is definetly not genetic, is there a new study on that? There is so much research that It's hard to keep up.
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Funny post about the kids. I showed my 30 and 19 year old daughter. My 16, 22 and 26 year old sons DO NOT want to see. NO WAY. I told them I could now swim topless at pools and beaches and they were disgusted..lol. Anyway, my daughters said it wasn't as bad as they thought it would be. That was good. By the way, I won't be doing that topless swimming!!! The sight scares me...I may remove all mirrors from the house.
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