2010 Sisters
Comments
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hey ladies! Thought I would add my own experiences here too. I go to my onc for everything. Although I like my PCP, my onc is the one that I go to first, at least while in active treatment. Since I'm only on herceptin now, I'll probably start seeing my pcp again more often. I haven't seen her since my pre-op last spring, because the only help problems I have had have been related to chemo or rads. Amyjo is right--i think it's whoever you have the most confidence in to handle everything. Some oncs seem to be too busy to be "bothered', but mine is happy to help with everything! I won't see my bs, or rads onc at all anymore (unless there is a problem), because they know my onc will continue seeing me.
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this is interesting because it seems my MO and RO want to keep seeing me. My PCP and my BS are ok with not seeing me as long as they get all the reports. But I really like my BS so I will probably see her at least yearly. My MO and RO are next door to each other and talk regularly as they share lots of patients so I guess I will wing it for a while.
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I will see my BS every 6 months and will rotate having either a mammo + US or MRI. I was "mammo occult" so my BC did not visualize on mammo. I'm going to try to see if I can skip the mammo, don't see any point to getting radiation if it doesn't show anything. My MO has sort of indicated that if I don't take hormone therapy, she might not be the right doctor for me. I would hate to have to find another MO, but might try. Fortunately, my RO has made it very clear that he will continue to follow me. I have the best relationship with him, an astonishing, open, sensitive doctor who is so very smart and up on everything. Unfortunately my PCP just dropped my insurance as did my GYN. So I just had to pick new ones. The insurance company gave me a list, which ended up being grossly out of date. Out of the 10 doctors I called, 9 did not take my insurance and the 10th had been dead since July! I have appointments with my new GYN tomorrow and my new PCP in a couple weeks. I am praying they are even remotely acceptable, not much choice.
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My MO sends my blood work to my PCP when I need refills of my thyroid meds. I do not see my PCP on a regular basis as up until now I have not been sick only for the thyroid and only went for blood work. My PCP is a good Dr. and all my family sees him but my DH is not satisfied as he does not seem to be a hands on Dr. He is young caries a laptop and asks questions. My MO is great and caring referred me to my RO as they are partners, my BS did say my MO would be my point of contact then her for life pretty much. My MO until I am off hormone therapy I guess. It is interesting how no one seems to have same philosophy about this. It is almost at one point you want to go to a cancer center and get treatment there. For the most part I have been happy with all my Drs but it has not been a straight forward process that my DH thinks is should. He is an engineer after all.
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Desingermom I am on kinda the same schedule as you. Alternating mammo+US and MRI as mine did not show up on my mammo either. But mine rotates every three months. So I wonder about getting 2 MRI's a year and 2 mammo+US a year. That on top of all the other radiation I have had this last year, multi mammo's, 2 US, MRI, Pet Scan, radiation and the CT scans and xray's that go along with that. I think I should be glowing my now. Hope you are able to find a PCP and GYN that you like.
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I was told that initially I will see my BS every 6 months and my onc every alternating 6 months once I'm done with chemo I think for 5 years. It might go to once a year after that for both. Not sure if I have to see the onc when I continue to do only herceptin every 3 weeks after chemo. I will still see my Gyno and PCP once a year for check-ups. Granted I feel I should get some kind of discount from gyno since I don't have any boobs
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you all are so great- thanks for the input. I am seeing the oncologist tomorrow and regular doc on thursday- then I will decide who gets to be in charge- after me of course;)
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Well we have been to our second opinion consult. Although the BS was in agreement about the modified Radical Mastectomy, she was firmly not in agreement on the type of surgery offered to me at home. My 1st consult I was told my BS would empty the breast leaving the outside skin only,accept for the nipple. Then the PS would come in and do the reconsruction by filling my empty breast with an implant, and a year later a nipple would be tatooed with the shaping etc. At MGH the BS will not leave any breast tissue at all for a few reasons, 1 chance of recurrence, I have many micro spots in addition to a tumor at the 6 o'clock position which was not biopsied, I was not aware of that tumor, and have tumors in every quadrant after all that chemo I was very dissappointed. 2 My body is/was creating clots on coumadin, and I have to inject 100ml of Lovenox every day, 3 my two port failures one was infected shortly after implantation, and the second just broke down inscision would not heal and opened up, 4 I will be having my chest wall radiated after surgery, 5 very high risk of clots with my history.. So I will have the breast reconstruction 1 year from mastectomy. Using my own donor tissue as foreign objects don't survive well with me so far...Surgery scheduled for 1/26/11, an overnight stay and I will be on the road home. I am at the acceptance stage now, feeling calm now that I know what will be happening. It was my worst nightmare mastectomy, before all this "treatment", now my worst nightmare is possibility of recurrence. So I am saying goodbye to my breast sadly, but sure of my choice. Living is the desired outcome right??? I tried to save it and have a less invasive procedure but maybe all that trouble got me here so I could accept that it has to go. My wound care nurse says I have come a long way baby, I was a hot mess back in Sept. now I am doing great. All my best to all of you, looking forward, to seeing cancer in my rear veiw!!! Kaz
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Having the MRI at noon today on my "good" side. Trying to remain calm...Wish me luck.
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Shelly good luck
KAZ-good luck with everything, sounds like you have really been through it.
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Big hugs to you Kaz and shelley. My goodness, BC sure is tough, but we are tougher!0
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((((KAZ)))) and ((((SHELLEY)))) Hugs and prayers going up for you BOTH!
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(((Shelley))). Be sure and let us know how it goes.
Kaz: Isn't it good when we can finally calm down and come to acceptance? It's a long, hard road to that place.
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Ok, I'm back. It wasn't quite as scary as the first time, since I knew what to expect. It is still hard to lay there STILL for 30 minutes with jackhammers and automatic weapon fire going on. I won't have any results for a couple of days since they forgot to tell me to bring my mammo/US images. I didn't have the nerve to ask the tech if she saw anything....thanks for the support!
((((Kaz))))!!!
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Kaz - good luck, I am sure you made the right choice on the surgery. I am having issues with recon since my BMX/recon in May. Have apointment with PS this week about it.
Shelly - double fingers crossed on your results.
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The MRI is a really noisy place to be that's for sure. I had mine last week and when the contrast was added, I got this "rushed" feeling in my mouth and hit the panic button. Wrong thing to do! It cancelled the whole procedure. So I had to reschedule for the following day. Made sure I took a xanax beforehand and because I knew what to expect, I just prayed through it.
Here's hoping for good results!
Vikki
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Hi, mjb......I'm having issues with my recon as well. I see my PS on Monday....hopefully he won't tell me this is as good as it gets!
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When I had my MRI they gave me ear plugs. Next time bring our own. The noice wasn't bad at all with ear plugs. (Soft foam kind)
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Kaz--sounds like a good decision. Making the decision to have a mx was the toughest thing I ever had to do, but now I wish I had removed them both! You sound like you are at peace with your decision. Mine was pretty easy--hope yours is too!
When I had my last MRI they gave me headphones and let me pick what radio station I wanted to listen too. I could hardly hear it over all the noise! I have my next one in April, then I'll be every year after that.
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Yep, I had earplugs and it was still loud. I had that flushed and rushing sensation with the contrast the first time, but they had warned me so I didn't panic then. This time I barely noticed the contrast. Just a cold feeling and a metallic taste in my mouth.
Re: mx's, if I have a new cancer in my other breast, I'm having this one off, too. I just can't keep going through this, it is too stressful.
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The MRI technologists should always offer you the foamy earplugs, Our guys also have a set of hearing protection earmuff looking things that you would use on a shooting range. Those work pretty well when used together.
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Shelley, I certainly second that, if it developes in my R side it goes, no two ways about it...I know too much now to waste any time with it..thanks for the hugs it means alot. Good luck to you!!!
TMarina,Ironically it is going to easier than the events of the the last 6 months!!
MJBMiller, Hope you have good news with your PS, I see why the wait for recon can be the best route.
LadyinBama, Calm cool and collected, I haven't been this grounded since my DX. And yes it feels great, I only cry now when I read of our newly diagnosed members, and wish them all to be held in love as they walk this path.
Suzanne, Hoping it gets better for you, good luck Monday.
Barbara, Thanks for the love, same to you!!!
Omaz, I had no idea how tough I would need to be, My daughter gave me this quote framed with a picture of the view from his hospital room at DHMC when I was caring for my DH after his brain tumor in Sept 2008 (not cancer!) "We never know how good we are until we are called to rise." Emily Dickinson. In my worst moments I would just read it and know if I could survive the fear of that, which was worse!! I can certainly survive this.
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Thanks, KAZmTAZ! I'll keep everyone informed how things go on Monday
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Ready for some good news ladies? I went to the onco today get the results of last weeks labs and to get my Aredia treatment. The Tumor Marker Count was down from 99 to 63 and the Circulating Tumor Marker Count - I think it is the Ca2.29 - was down from 215 to 13!!! even the onco was literally doing the "Happy Dance" for me. They gave me some steriods before my Aredia so that I would not get sick and so I have had a good day today.
Oh I also saw the PS for a post-op visit from last weeks surgery and he is pleased with the way things are healing and gave me some things to do to help it along. I will go back to seen him next week, then the appointments will be spaces out longer apart.
Time for bed so hope everyone has a restful evening and a joyous day tomorrow.
Joy and blessings, Amy Jo
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Wonderful news Amy Jo!
Sleep well and have a GREAT weekend!
Tori
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amyjo- Oh my friend, prayers are answered. I know they are! I am so very happy that you are getting such great news. Your Yankee friend is celebrating with you!
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Kaz -
My appointment with my PS went better than I thought. He was very understanding and stating that recon was my personal decision to make or not to make. After a few tears we talked about options, well my decision going in and still is that recon is not for me. Since I am still in rads, he said I would not be able to do surgery until about three months after treatments. He wants to see me in two months and in the process think everything over again to be sure. He does think it makes since I am not doing recon the right (tumor) side to remove the TE on the left (good) side. Also, to do surgery at the same time to smooth both sides out. So I am thinking surgery sometime in May which coincides with the anniversary of my mastectomy, May 11, 2010. Told my DH, he thought it might be sooner but understands why. We are just ready to get things back to normal as normal as it can get now. I am at peace with this now, just have to wait awhile but I waited from May to November 2010 to try recon again, I can wait til May just fine.
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{{{{{{{{{{{{{AMYJO}}}}}}}}}}}}}}} what wonderful news! Yes, prayer is a powerful thing.
(((MJB))) May will be just fine for you, I feel it.
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mjbmiller, Its good that you are at peace with it. Waiting is the next hardest. Although I am looking forward to a year without intrusions!!! Having MX on 1/26/11. Rads following and then tamoxifen. I should be good to go for spring, Kayaking, biking, camping, etc. Romantic weekends away with DH!! Life as i knew it before cancer!!! Maybe even some golf with DH!!! Wedding planning for DD!!! I am starting to get excited about my life again...Kaz
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AmyJo I am doing the happy dance for you.
mjbmiller-glad you are taking the time to really think through all of it and be at peace with your decision.
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