Calling all TNs

Yay: Chemo worked........ thank God.   I will proceed over to get radiation started next week.  I will meet with the Dr. not start yet.   Thank you for all the prayers and support and PLEASE KEEP THEM COMING as I face this next journey in life.   My blood pressure med is kicking my butt too so prayers we can get that straightened out soon would be appreciated.     Thanks again and thank you Lord.

I did call over and talk to the man who did my Pet Scan pertaining to keeping the prosthesis on.   He promised me that they could see, he said that if it were a straight on shot then no they would not have been able too but they are shooting at 360 degree angles and they can see under it and everything.   I specifically ask can you see my lymph nodes and he said yes he can.   He even told me to come pick up a copy and look at it myself on my computer to ease my mind that they can see it.    I will probably do this too.    I know one thing for sure though, next time I am taking it off just to ease my own mind.............wow what cancer can bring to mind.

They said because there were zero cancer cells left and because it never went to lymph nodes that I didnt need radiation. I was about 50/50 prior to pathology that I would need it because my tumor was large at 4cm. Im glad they said no radiation, I would rather have that as an option if I had a recurrance.

All my testing was done up front.  Did chemo first, then straight to surgery, now in radiation.  Other than blood work, I've had no tests done (other than those pesky "xrays" in radiation.

GoWithTheFl yes, my wife had all of the tests known to man "up front". I guess what I'm asking is once chemo is complete, shouldn't there be some kind of tests to see if treatment is on track? Mammo? PET Scan? Something? What if the tumor recurred? Wouldn't it be beneficial to know if you need more chemo or something? Do I sound like an idiot? If I do you can say it and I won't even be insulted. It's just that nobody gets any practice at this stuff. I can't wrap my head around the possibility that they just fill you full of poison for 12 weeks and wish you well.

Hi everyone!

OBXY-Sorry to hear that you had progression. I hope the next treatment is gentle on you and works to kill those horrible  cells.

Stupidboob-Great news on your results!

CS-Great cloud picture!

I want to say thank you to OBXY, I think it was you that mentioned the statin drug causing muscle pain. Around the time of my hysterectomy my doc had increased my lovastatin dose, and I had mentioned to her more pain and asked about the increase causing it, she said probably not but discontinue for a couple weeks to see if it got better, and it did not get much better, so I resumed taking the statin. I still had my doubts and when you mentioned it I decided to stop the lovastatin again. Well, very gradually I started to feel better. Last night I got worried about not taking the medicine so I took it. OMG! The pain was horrendous this morning! I almost went to the emergency room. My hands were cramped closed, had a hard time opening them, my head hurt, my legs were terrible, especially my calves, and when I walked I felt so weak. I know this can be a dangerous se of statins, but I took a couple of advil and went back to bed. I woke up about 1pm and felt a bit better, still very tired. I am never taking that medicine again! It was crazy awful and I don't know how I got through it all those months. So a big THANK YOU to make me think about this more! Did a little more research and found that se's tended to be worse when taking 30mg or greater, I had gone from 20 to 40mg.

So, I killed my plants. I also had bought 2 tomatoe plants and I managed to kill them within a couple of weeks. I wonder if the potting soil I had was too rich. I ph tested and it all was in the range it was supposed to be in. I am calling myself the grim reaper of plants. They shreak in terror when they see me coming!

Alhusband- I was told that I would not have any scans unless symptoms warrant it. I wont even have mamos anymore because I had DMX with diep recon. There does seem to be a myriad of experiences when it comes to doctors and how they do things.



Bak94- LOL I kill plants too. :-)

Alhusband: You do not sound stupid! I think most of us feel the same way you do. I had all of my testing before surgery and I never had a PET scan! After surgery I did chemo for four months. My oncologist said the same thing to me. He will monitor me through blood work and tumor markers and I will have a breast MRI once a year. Scans will not be ordered unless blood work warrants it or I have symptoms. They don't want to expose you to unnecessary radiation and I understand that but how do they know the cancer is gone if they don't do a scan? It is very scary. I go for my first round of blood work at the end of July. I am sure I will have anxiety leading up to that appt!

ALHusband -- may be because we are both going to CCI but Zyrtec is what they told me at double dose. I was taking it with AC for the Neulasta shot. I would take it for 5 days each cycle. I never had issues with bone pain. I just used the generic brand.

Karen - Honey, I am so very sorry to hear your news of progression.  There are just no words.  I feel like Cocker, just mad, so mad. What the hell!  And the Radiologist at Women's Center had the nerve to tell me that he hasn't seen any recurrences, they just don't happen, I swear this is what he said at my last mammogram.  I was so confused when he said this, I couldn't believe it.  He said I should not worry at all, since they don't come back, he doesn't see any recurrenes in the center where I go.  This is all wrong, false, garbage.

Cocker, I have read somewhere why they find it so difficult to understand this disease because the cells multiply and then assume a totally new set of properties.  While the scientists are analysing the first set of cells, the cells have multiplied and each cell has then taken on a totally new property.  Of course, I am interpreting medical literature, but basically this is what it meant in layman's language.

GowiththeFlow - I had no node involvement, but yet they gave me radiation for a whole month, plus boosters.

Inspired - I like the way you dealt with your Oncologist.  I would like to do the same, or that I need to do the same.  However, I don't have any current issues, so I hardly see her these days, except every 5 months.  Recently, I was having severe back pain issues which was similar to before diagnosis.  After doing a blood test which came out all normal, she suggested, maybe you should see a psychiatrist or someone who you can talk to, maybe this is all in your mind.  Such doctors should not be practicing.  I want to complain to the head doctor who used to be my first Oncologist, about this comment and I will. These types of comments are a NO-NO-NO.  The doctors used to say these types of comments to women in the 1980's & 90's, then an awareness came when doctors realized the disease called fibromayalgia, that it is not all in the mind, that women really have pain. In the medical community, the awareness was that this comment is extremely frustrating to women and should not be said.  I don't know where my Oncologist was, when this awareness was all over the community.  I am so mad at her, that I never want to see her again.  Unfortunately, my best Onco. moved to Seattle, and left her with me.  I don't have too much choice of Oncologists at this office, but the rest of the office staff are wonderful, especially the chemo nurses and the front office.   No, it is not all in the mind, they don't know what brings on this disease, therefore, the cause is still unknown.  Some forms of cure are there, and which I have taken, but my cause is still not known, so I have symptoms of something going on.  She should concentrate on finding out the cause, rather than suggest see a psychiatrist.

Lovelyface:  Oh my gosh, I totally get what you are saying. They imagine their patient as being a hypochondriac first, instead of first following a your belief, which is your belief that something is going on, and you want to find out what it might be.  I don't like being dismissed either, and it's happened to me a bit upfront, when I kept asking so many questions, and my angst and worry was apparent.  When I showed up to talk to my Onc, I also did it without notice.  I did it on the day I got my final Neulasta shot, I usually see only the nurse for this.  But when she walked up to give me my shot, I said "I need to see my Onc."  So she said okay, and then he walked up to me, where I was sitting, and said hello, thinking I was going to ask him something, and I said "No, I need to see you in private" ... and then we went back into an exam room.  I had him definitely engaged, and he listened very intently to me.  Then I listened to him. We were very respectful and didn't interrupt each other, just listened and let each one say what they had to.  I walked into the room feeling like I was going to cry and have a mental breakdown, but left the room knowing that he and I had resolved a communication barrier, gained a new level of understanding of each other and were going to be 'thick as thieves' after that.  Things have been so wonderful after that.  Even so, that at Thanksgiving, I gave him a card that said "when I count my blessings this Thanksgiving, I'm counting you twice." We still might not agree on all things, but we are able to understand what each of us is about, which leads to a better understanding of why I ask the things I ask and want certain things, and why he himself does certain things as well.

... adding to what Schatzi said ...

Oncologists will also take into account the individual risk assessment of the patient, along with other unique factors when determining a survivorship plan, and those factors may include status of genetic testing, family history, location of breast tumor, current labs, pathology report, etc.

If you aren't comfortabe with her survivorship plan, you might consider visiting another doctor for a 2nd opinion.  Sometimes it's helpful to understand why they are or why they aren't recommending a particular protocol for your wife's particular case. By choosing to have a 2nd opinion, you will have the viewpoint of 2 experts in that field to compare.  If you are concerned about upsetting the relationship you currently have with the current Oncologist, just remember this:  they are very used to clients getting a 2nd, 3rd or even 4th opinion.  They have personnel in the office that routinely fax information to other offices, being that of the 2nd opinion offices.  Also, you could instead ask for a complete copy of your wife's file, and then have it on hand and hand deliver it to your 2nd opinion offices.  That way they won't even have to request any information, and you could convey that you would like that visit to be kept confidential.

Also, you can get a free expert medical opinion online at AskAnExpert-JohnHopkinsBreastCenter.  I've used their service as a guide before to obtain additional information.

Karen- God bless, I hate this for you and I hope you and your family have a fantastic summer!

Obxk....you sound comfortable in your decision. You are a strong woman who has thought this through. You will have a magnificient summer with those handsome boys of yours. We love you. You are inspiring



Maggie

OBXK:  My heart breaks to read your words.  <hug>

Morning hugs to all you ladies.  Hope you have a great day.