TRIPLE POSITIVE GROUP

pbrain - I still have my port - my BS (who put it in during my BMX in November of 2010 so I have no external scar) says to keep it indefinitely.  It is so tiny and to remove it would leave a new scar visible at all times regardless of the neckline I wear because it is just below the hollow of my throat.  My MO wanted it in until I passed the first couple of years - because of the Her2+ thing and the potential for early recurrence.  I saw the MO today for a 6 month appt. and he was examining me and felt my port and said I can have it out.  I said "no thanks" I will leave it there, and he said OK whatever, it was fine with him. I don't mind having it flushed because I have no negative association with the chemo room, and I like staying on the radar of the nurses - when I need a prescription or something I appreciate that they know who I am immediately.  I just had a bunch of blood work done Tues. - Vit D, CA 27/29, CEA, CMP, CBC - so since I had bi-lateral nodes removed, and have lymphedema on the right, I like that they can use my port.

moon - you and I think alike - as long as I have the port I won't need it, remove it and I will need it a week later, lol!  My port is my talisman!

Ladies:  I thought the same thing but I wanted it out and it has been nearly a year and happy it is out.  Moon:  I too had SNB but I've been told to only be concerned with blood draws, bp checks, etc. on the affected arm. So far, so good!  I never let them take blood or my blood pressure on that arm.  I now see the onc every 4 months for blood checks.

SpecialK:  I've printed out some of the blood tests you have done and will chat with my onco about those because I don't have those tested.  Thanks!

I got a cbc, CMp every week before herceptin.. and tch. . I got a mag the next time if I was low the last time. When I was finished with the tch and just herceptin every three weeks got the same then. Got vit d every 6 months, A1c every three months. My D level is only 34, and I take 4000 units a day! Now getting every three months. Special k we are a lot alike, huh! Arlene. I had a bmx, so both sides are affected! So they do bp on leg, blood draws without tourniquet if they don't use my port.

dragonfly keep us posted. Hoping for B9

Pbrain I kept my port for 2 years per my oncs request (although not a must). Her feeling is that recurrence happens most often in the first 2 years so she likes us to keep them till then. My treatment center will not put a port back in, in the same location due to increased blood clot risk. Typically you should get it flushed every 6 weeks but my onc said ever 3 months. For 2 years I had it flushed every 3 months. Had it removed this October/November. Granted I  had bilateral nodes removed (SNB with 4 nodes on right, 10 nodes with LE on left) so I don't know what's going to happen with the blood draw this fall. Can't seem to find anyone that will do it from my foot. I used to get them through my port.

Come on over SpecialK.    My D levels went up so much that I'm off the D now but will be checked again in August (I'm now at bloodwork every 4 months).  Have a great Friday and weekend everyone.

Thanks guys.  I know I'm a hard stick and I tell the poor phlebotimists I am not in the least easily freaked by a blood draw, but so many of them can't get the vein, even in the wrist and the back of the hand.  I'm kind of glad to keep the port, but I'm also surprised about how many times I've been told that they can't use it because they aren't trained for that (primary care doctor's office, and the cardiovascular techs that do my echos),  They've just dug away at my hands and arms when I have this perfectly wonderful port-o-cath!  

Oh, and my last vitamin D (January) was 21!!!  I'm the world's biggest sun worshipper.  I was stunned.  I think part of the issue is that there is vitamin D2 and vitamin D3, so check your supplements.  Food is usually fortified with D3 and pills are usually D2, I think....I might have that backwards.  Most tests should measure both, but I believe some only measure D2.

Lago every word I think of is so inapprproate, even for me --but that's not bad. LOL

PBrain u can set it up too about u'r port cuz u know the techs can't do it and tell them they can have a nurse there to do it. And of course u can go to u'r chemo floor they're always happy to help. The more u go they seem to know u and the techs get u set up so u'r port is used.

Thanks Lago and Cami, I have been told that by the cancer center, just drop in.  I think I'll do that in the future. My echo appointment probably wouldn't have applied though.  They wanted to circulate shook-up saline (hence Don Ho tiny bubbles) into my circulation while they did the echocardiogram.  I guess it improves visualization?  After all of the years I've worked in cardiovascular pathology, I've never heard of that.  So maybe I subconsciously clamped down my veins because I was worried about an embolism 

Dragonfly, as you know (per my thread on this), I am going through the same issue and had my endometrial biopsy on Tuesday.  Lucky for me, it was only mildly uncomfortable.  I had been really freaked out by the stories I had heard regarding the pain associated with it.  Now, I'm not sure if I am just lucky in that I had minimal pain, or if it was my doc's technique - but she had me cough during the insertion through the cervix, and I also took an ibuprofin prior to the procedure.  You may want to discuss those options with your doc - see if it makes it more tolerable. 

I thought so too and gave my doc big kudos, but she said it had nothing to do with her - that others have had bad pain from it with her doing the procedure...so either she was humble, the pain pill and cough worked for me, or I am just lucky in that I tolerated the procedure well.  I do know if I need this done again someday, I will insist she be the doc.  She was so kind and understanding of my fear of the pain! 

You sound like me.....I am 32 and was diagnosed this year, triple positive, brca1 and brca2 came back negative. MRI showed at least 6.5cm with swollen lymph nodes but not sure how many yet! They are doing 4 chemo treatments first then surgery-A/C first then after surgery 4 more chemo taxotere and herceptin for one year and hormone therapy! I am mom of 5 ages 13, 9, 6,7 and 4 it has been emotional for me ....and all I think about is the recurrence in young women and if I'm going to survive! I had one chemo done and next one is Wed. I just don't know how they know how many lymph nodes etc...if u have chemo first! I'm sure I am in stage 3 right now! CT scan of head, MRI of adbominal and chest wall, bone scan negative at this time! I just hope everything goes OK! My Richard & Bloom scale on path report showed 2 of possible 3 grade with poor differentiated. Life to me suxs! I would like to know the recurring rate and survival rate! She hasn't even staged me yet! I'm so confused

Goutlaw, hang in there.  I think the first few months must be so tough for women getting chemo before surgery.  But you will be able to know if your tumor responds, which I don't.  I had surgery first and then chemo.  And yes, at the beginning it is so tough because you have no idea what you are dealing with.  I got to know much earlier than you, but there are many women on this board who had neo-adjuvant chemo and they can give you advice.

My thoughts--do the best you can to not think about anything but getting through the AC and reducing that tumor down to the size of a speck!  And keep us posted.  I am older with no children, but I absolutely sympathize with your fear and worry.  So go fight like a girl and go to surgery with no evidence of disease 

Goutlaw,



Welcome to the forum . In my opinion you are in one of the worst phases of this process. Stunned, scared, overwhelmed and a dozen other not so great feelings all seesawing within you. My mo 's were both reluctant to do the statistics with me but I agree wih Lago that your stats are higher than 50/50. There 's recurrence stats and there's survival as well. There are many women wo recur..in fact some have multiple recurrences and live long lives folowing DX.

The really good news is that there has been and continues to be excellent progress in the treatment of breast cancer and most of these new treatments are in the area of Her2 pos breast cancers.

I too had neoadjuvant chemo. There are several chemo protocols and there are women in this forum who had excellent responses to each of these protocols. As Lago said..at least you'll know how our body responded. If it didn't respond well..the might add another regimen .

It's going to be a long hard year for you but each of us here has gone through it . Some sail through. Others take what we call the scenic route. Stay here and you'll meet many of them. You can and will do it just as we did. We'll all be here to help you every step of the way.