Dis Breast Cancer Survivors Part IV - GAGWTA

Doctor appointment went well. He said there is no sign of cancer. :banana::cool1: However, he did say he's not sure what to do about the spot of atypia and that my GAL (don't know what this is but I'll be googling) is high. When I asked what that meant he said he means my chances of developing breast cancer are high. :eek: He said he is not recommending Tamoxifan or anything else at this time but does want me to see an oncologist to get her opinion. I called as soon as I left his office (they're all in the same complex --breast doctor, Breast Center, hospital...) and they are getting me in to see her this afternoon at 1:30. While it's a very sobering thing to hear, I'm glad that things will not be going forward at a rushed pace. Depending on what she says I may have to start thinking about some pre-emptive surgery. Just not sure what it all means at this point. And I'm going for a new baseline mammo in March, then every six months.

I also asked him about low levels of Vitamin D, which I have, and he said he absolutely believes it might play a part so suggested I take 2500 mg of Vitamin D a day for a month and then follow up with my MD to see if my levels are better.

Thank you everyone for your thoughts, wishes, prayers and guidance. So while I had a good result today, I need to be cautious about my future. And I'll be hanging around if you all don't mind. :hug:
 
PrincessKsMom - glad you got good news today. And it's good that you have time to do research and be proactive.

Today I went upstairs for the first time in a week to get the teens out of their beds. My DD14 was bored and cleaned up her room so that was nice to see. My DS18 not so much. LOL

Even though DS18 and DH haven't committed fully to going to see my DD14 play her flute at DTD with her Middle School band in 2014, I went ahead and booked us a room at POR - Riverside at 25% off.
I have my AP so I'll be going no matter what and I like that resort. Because it's 3 adults now I will have to pay the 3rd adult charge if my oldest comes but that is ok. I think the 3 of us will be ok to squeeze into the room for a few days.

DD14 will be staying offsite with her band group. That will be interesting with the magic bands, fp+, ect.

I think I'll start looking at restaurants next - I won't book any until I know for sure who is coming with me but I love looking at the menus. Anybody eaten at Tuttu Italia? That is one place we've never eaten at yet.
 
PrincessKsMom - glad you got good news today. And it's good that you have time to do research and be proactive.

Today I went upstairs for the first time in a week to get the teens out of their beds. My DD14 was bored and cleaned up her room so that was nice to see. My DS18 not so much. LOL

Even though DS18 and DH haven't committed fully to going to see my DD14 play her flute at DTD with her Middle School band in 2014, I went ahead and booked us a room at POR - Riverside at 25% off.
I have my AP so I'll be going no matter what and I like that resort. Because it's 3 adults now I will have to pay the 3rd adult charge if my oldest comes but that is ok. I think the 3 of us will be ok to squeeze into the room for a few days.

DD14 will be staying offsite with her band group. That will be interesting with the magic bands, fp+, ect.

I think I'll start looking at restaurants next - I won't book any until I know for sure who is coming with me but I love looking at the menus. Anybody eaten at Tuttu Italia? That is one place we've never eaten at yet.

:goodvibes nothing like planning a trip to help recovery!! and I seriously look at menus alllll the time!! I love picking out what I am going to have ahead of time, the other night I couldn't sleep and was up till 4 am looking at menus in Hawaii, picking out the restaurants we could not miss....I had to go make some toast! lol...as you see by my signature fairy quote....I love food! the food thread at the Disneyland forum is my favorite one!
 
Doctor appointment went well. He said there is no sign of cancer. :banana::cool1: However, he did say he's not sure what to do about the spot of atypia and that my GAL (don't know what this is but I'll be googling) is high. When I asked what that meant he said he means my chances of developing breast cancer are high. :eek: He said he is not recommending Tamoxifan or anything else at this time but does want me to see an oncologist to get her opinion. I called as soon as I left his office (they're all in the same complex --breast doctor, Breast Center, hospital...) and they are getting me in to see her this afternoon at 1:30. While it's a very sobering thing to hear, I'm glad that things will not be going forward at a rushed pace. Depending on what she says I may have to start thinking about some pre-emptive surgery. Just not sure what it all means at this point. And I'm going for a new baseline mammo in March, then every six months.

I also asked him about low levels of Vitamin D, which I have, and he said he absolutely believes it might play a part so suggested I take 2500 mg of Vitamin D a day for a month and then follow up with my MD to see if my levels are better.

Thank you everyone for your thoughts, wishes, prayers and guidance. So while I had a good result today, I need to be cautious about my future. And I'll be hanging around if you all don't mind. :hug:

that is really good news!! :thumbsup2
 

Hurray for good news PrincessKsmom!

Let us know how the oncologist visit goes.

For mysel, I would definitely consider prophylactic surgery. I totally believe in its value, its proven. Drastic but effective. I think we are lucky to live in the days where testing identifies those at higher risk.

When I was first diagnosed I found a book at my local Cancer Services lending library that detailed the history of breast cancer through the ages throughout the world. It was a difficult read, but I looked at it from the aspect of how very lucky we are in the here and now.

Tough decision though. There is website I was directed to by one of the originators of the GAGWTA thread, Laura, its facingourrisk.org.

It mostly is frequented by people who tested positive with the BRAC genes, but others like me read/post as well.

It helped me figure out the waters when deciding on reconstructive surgery. There were, probably still are, a doc (plastic surgeon) who answered questions there. He was in a well known group based in New Orleans so I had an interest there as well.

Good luck with your decision.

Glad you are enjoying your trip planning, smiley face. It sounds like it will be a wonderful trip. You are always so generous with your family members, I am glad this trip is for the two of you alone.:lovestruc

GAsleepingbeautyfan, I hope you get the drains out soon. You will like a whole new women. Simple things like a real shower are wonderful.

Dancind, I have pretty good luck with photo bucket for posting photos here. They seemed to have made it easier to use lately.

Thinking of you Cheryldan, I know you were supposed to have your CT scan earlier this week. Hope the roads allowed you to get there.

Peg, congrats on your post chemo haircut. Making progress!!!

My aging dear doggie has had a couple hard nights. It may be time to let go, I am just not sure. I am struggling but DH, DD18 and DS25 are helping me. I love my family. What a wonderful gift we have had since 2000 when my precious Italian neighbor, Fara, brought that beautiful dog to our house after she found her, had her groomed and checked out by a vet. Fara knew I had promised to get our first family dog if DD18 who was only 4 at the time gave up sucking her thumb. Of course she did, immediately, so I was faced with finding a puppy/dog.

Fara came to my rescue. As did Snappy. God do I love that animal. What solace when I truly needed it recovering from surgeries in 2004 and 2006, not to mention during the Katrina days.

I'll keep you posted on what happens but I fear it will be sooner than later although DH says he thinks Snappy has time. I think he is in denial which is what he accuses me of, ironically enough.

GAGWTA
 
Hi everyone.

Snappy, I'm so sorry you are coming to the time where you might have to make a decision about your puppy. They are truly the most selfless animals on the planet and bring more joy and comfort than anything else and all they want in return is to be with you and be loved. :hug:

My oncologist appointment went very well. I love that woman! :lmao: She spent approximately an hour or so with me. Went through everything with me. Explained everything, chatted with me about my life, etc. Really took her time in getting to know me and making sure I was completely informed. She tends to disagree with the surgeon. And it wasn't a GAL score, it was Gail. Some form that you can fill in through the Susan G. Komen site (which took us somewhere else), asking questions about age of first live birth, age of first menstruation, number of biopsies, etc. She said some of my answers are so borderline that simply changing one answer can make a huge difference in the outcome. So while they use it as a guide, it is in no way definitive. She drew me a picture and explained what FEA is and how, "if" it were to become a cancer, it could take 10 years. She said I basically have one small cell/area that is slightly deformed and showing changes. There was nothing else in my surgical biopsy. Nothing. She did agree (as did my surgeon and the nutritionist she had me see afterwards) that I need to get my Vitamin D levels at the appropriate level (I am deficient) and also said I need to get my weight/diet under control, not only for breast cancer for an obvious multitude of reasons. She was so reassuring and down to earth and was in no rush. I'm so glad the surgeon wanted me to see her and they were able to get me in yesterday. When she took me to see the nutritionist, who was with another patient, we had to walk through the chemo unit and there were numerous patients receiving their treatments. It was quite the sobering walk and she alluded to how I didn't want that to be the "Ghost of Christmas Future". Three months of worrying about tests and results and walking that walk. I need to get a handle on the things I can change and need to change. Her honesty was very much appreciated and she picked up on the fact that I sometimes have an in-your-face, take-no-prisoners kind of approach to things, so she met me on that level. ;)

I spent about 20 minutes or so with the nutritionist and she was very helpful as well and also very friendly and positive. I cannot say enough things about Overlook Hospital in Summit, NJ and all of the people I've come into contact with. They are truly an amazing group.

The end result is I need to go for a new baseline mammo in March, then six months later a follow-up. MRI/sonogram will probably become the new normal for me as well. She also made it clear that we were just talking about the FEA I have now, and there are no guarantees that something else might not come up in the future or that we might have to revisit this FEA if we see further changes in the future.

So for now I'm breathing again and grateful for another chance to get myself and my priorities right. And I honestly could not have gotten through this all without the help of my family, you ladies and my FB friends, most of whom I've met through the DIS and never even met. I am humbled at the amount of support and encouragement I have received. :flower3:
 
PrincessK mom - so great to hear your good news. Its great that you like your care team. I didnt like my oncologist from the get go. She never offered me any hope. It was just like doom and gloom. I even told her cant you offer me any hope? She just said, its agressive and we will treat it agressively. All I know is thank God I had my faith to hold on to and I know so many people were praying for me. She is always just a debbie downer to this day. I am glad I only have to see her once a year

Glad they are keeping an eye on you and they will be on top of things. I have heard of that hosp.

Laurie - so sorry to hear about Snappy. I know how much of a big part she is in your familys life. Our fur babies are such a comfort and joy. Thinking of you all.:hug:

Cheryl - thinking of you and hope you got to get the ct scan. I am glad you had such a wonderful trip. I am sure it was refreshing.

Peg - hooray for the haircut! Those little things are so encouraging.

kofslinky - hope your drs. visit goes well

smiley - I hope you and your dh have a wonderful time in Hawaii. It sounds like such a dream trip come true! Cant wait to see all your pictures.

Ga sleeping beauty - hope you are healing. Its nice to have a disney trip to look forward too. I dont care for Tutto Italia. But that is because there are just so many good italian places here in NY. Last time we went there it was terrible. I did a dining review on the boards. So now its off our list for a while. For our next trip whenever that is my dh has asked to eat in Norway with the princesses. He said he misses norwegian food. (We went to Norway about 30 years ago).

JillyB - how are you feeling?

Diana - cant wait to see your remodel pictures too. Hope your dd is also feeling better.

My dh said it was hot in Calif. yest. so he put down the window when he was driving because it was almost 70. Oh too bad he didnt get to experience our lovely polar vortex and high of 9 degrees yest. Sigh, grr.

I am thinking of a March trip. I will have to talk dh into this. He said he might ave to go to russsia then so we shall see.

GAGWTA. - Thinking of you all
 
Great detailed post.

I agree I am buoyed by the ladies here as well.

Nice to hear you connected so well with that oncologist. Sounds like a great bedside manner. I feel a similar kindred spirit kind of thing with my internist.
It can be rare but it's coming for you at an important time. I am glad for you.
 
GAGWTA

Happy for all the good news here. :goodvibes

Laurie, I am in the exact same boat with my beautiful German Shepherd. I thought it was going to happen a few days ago but we got a small reprieve. It is one of the hardest things we have to go through when we love a pet so much. My girl very much helped me get through my cancer as well. In fact, we got her while I was still doing chemo, and afterward, the radiation techs made me take here there so they could see her. I remember laying in the machine and hearing the chaos outside that was my six year old twins and the puppy. :eek: Nuts. Time goes by so fast, doesn't it? I'll be keeping you and Snappy in my prayers. Know that I'm having the same difficulties you are. :hug:

It's been busy here. Both my DD and my DS had surgeries over the Christmas break. My DD's was two days before Christmas, with her discharge being Christmas Eve day. I don't even know how I managed to get everything done, but somehow I did. But I basically slept New Year's away. The dog has required a lot of care, and my mother, who's 88 now, is homebound due to the cold and ice. She's taken a few falls and doesn't want it to happen again, so I try to make sure she has everything she needs and stays connected, etc. I have to have surgery at some point, too. So the doctor's appts here have gotten to the point of ridiculousness. :lmao: Work keeps me busy, too, but some days it's good to go to work, sort of like when you have little kids, you need a break!
 
Ah thanks all of you. I absolutely knew y'all would understand.

Linda, I remember your post saying you were also dealing with an ailing dog.

I'll be in touch with directly at some point if that's ok. This is the first time I have faced this. It is a huge help to share.

I can't conceive how busy you have been, with surgeries and doctor visits at this time of year and with the awful weather on top of it all.

Hugs right back to you, darlin':grouphug:
 
Laurie and Linda, So sorry to hear about your precious doggies. I can't imagine how difficult it must be. :grouphug: Our fur babies become such a huge part of our lives, always there for us with a smile and a wag whenever we need it most. I loved your stories about them and your kids, its amazing how quickly time does go by.

LMP, a March trip sounds great.......weather should be really nice then.

PrincessK, yay for good news! Sounds like your oncologist is a terrific doctor.

GaSleeping, Disney trip planning is the best therapy! Glad to hear you are feeling better.

Smiley, how is the Hawaii planning going? :beach: I'm sure you are up to your eyeballs in dining reviews - not much time left! I'd also be too excited to sleep!
Have you decided on any activities yet? Other than the beach, that is!

I'll be working on some pictures soon. And yes, moving there would fantastic! Although, I think my ultimate fantasy town is still Coronado. Oh yeah.....almost forgot to say thanks for posting about how good the filet at Madeline's is! LOL, it was awesome!!!

I did manage to make it for my CT scan Monday. Actually, DH was home since his job was cancelled due to the weather, so he got to do the driving! Once again, my port would not work. It wouldnt work in Nov either. I see my oncologist tomorrow to get the results and see what lies in store for the future. DH is taking off work to go with me.

After we are finished with my appt, we are going to take a trip to Ikea to get new cabinets for the condo. The rehab is coming along nicely, although with delays for Christmas and our vacation, it is taking a little longer than we'd hoped. We still haven't figured out how to get into the detached garage yet. It has an electric door opener, but no remote! I guess that is one of the joys of buying a foreclosure.

GAGWTA!!:goodvibes
 
Cheryl, no door on the garage? Wonder if a locksmith or garage door repair can help you? Sounds like a lot of work, but will be worth it. If we ever get to move to the Coast, it will probably be a foreclosed property. It won't be anytime soon, but the dryness here is very hard on me.

PKM, that is fantastic news! It never hurts to work on your Vitamin D. Best way to get it up is to get some drops and place them under your tongue. Just curious, what did the nutritionist say? I know they have all been trained to recommend a low fat, whole grain diet but the thinking on that is really changing. I am counting on controlling my blood sugar (lower carb, higher fat) to keep the inflammation in my body down and keep a recurrence at bay. Since I can't take the meds and had a very aggressive tumor, it's my best bet.

Peg, I bet you look cute with your Pixie cut!

Sorry to hear about the fur babies. That is so hard.

LMP, where are you going next? We are starting to plan a Napa/Healdsburg trip. We are winos, what can I say? I would say it is my one vice but more sugar has been sneaking into my diet lately. Very bad idea, must stop.

Connie, we have been to Tutto Italia, but I remember nothing about it. Must not have been great. But reading the reviews on the DIS boards always help the decisions. We did not like the pizza place, but apparently it has gotten better.
 
I agree about going low carb. It helped me not only lose weight but lower cholesterol too. The unexpected bonus was reduction in inflammation which was making my joints ache and contributing to nasal allergies.

It has made a huge difference in my quality of life
 
Doctors and nutritionist all agreed 2500 mg of Vitamin D a day and then I should follow up with my MD in about a month and get my blood tested. They we'll need to figure out what dosage I need to maintain an appropriate level.

Nutritionist didn't really go into details. We spent some time discussing Weight Watchers as I've already done that program. Mostly trying to get me see that my weight needs to be brought under control (I'm 250 lbs :scared:) and that there are small ways I can accomplish that (water for soda, whole wheat bread and pastas instead of white, being more active as opposed to locking myself in a gym for hours at a time...). She really tried to bring home the idea of starting small and building on that instead of trying to take it all on at once and making changes that will leave me angry and resentful, which will send me back to eating again. She said she'd be happy to help me but since it's about 30 minutes away from home (and in the complete opposite direction as work), she understood why I would try another route first. When I schedule my follow-up with the oncologist I'm going to schedule an appointment with her to touch base.

I'm an emotional eater (if I'm feeling an emotion I'm eating :rotfl2:) so I have to work on some mental things that will help me make better choices.
 
I've finally managed to get some photos up! So......here we go!

We spent a beautiful morning exploring Fisherman's Wharf. Even managed to pop in at Boudin Bakery for a quick breakfast. There were all the usual tourist shops, but also plenty of more scenic areas, like these quaint boats:



DH was thrilled, THRILLED, to discover it was dungeness crab season! Who knew there was such a thing?? He had to stop and have some right then and there!



I really liked this retro cable car!



Here I am! LOL. Christmas lights on palm trees is something I could get very used to. These are in Union Square, the area we stayed in.






We took a hop on hop off tour, and went out to the bridge. Also saw many of the different neighborhoods, and a lot of Victorian architecture.






On day we did a day trip to Muir Woods and saw the most fantastic redwood trees. We also found out that George Lucas lives/lived in SF, and filmed the scene of Star Wars with the Ewoks racing thru the forest here.







 
Thanks to Smiley's suggestion, we headed south to Monterey and Carmel. After spending some time at the wharf in Monterey, we headed to Carmel.




Carmel has got to be the most picture perfect town I've ever seen! I can only describe it as a real-life cross between Fantasyland and World Showcase. Not to mention being located right on the ocean! Yep, I could live there. :rotfl:













 
The drive down Highway 1 between Carmel and Cambria was absolutely breathtaking. I'm afraid these pictures can't begin to capture it. Very twisty road, up and down, with the most amazing views of the cliffs and ocean. To say it is literally right along the ocean is an understatement - sometimes it looked like we would drive right into it!








After a million miles or so ( ok, maybe not THAT many) we finally came across a place in Big Sur to use the bathroom and get a drink! We were totally unprepared for how isolated the area is. There were maybe three or so little stops like this, so cute!



We stayed at Moonstone Beach, and got lucky one night and caught the sunset.



Hearst Castle, just beyond description! It's amazing to think that it was built almost 100 years ago, way up high on a cliff. Incredible place!



The Christmas decorations were all still up, very nice





And just one of the guesthouses......yes, please. :)

 
My doctor appt was about as expected, more or less. Turns out he is sending me to another oncologist to discuss the option of having chemo injected directly into my abdomen, a procedure that is rather strange sounding for sure. I guess to boil it down to simple terms, they would literally wash my stomach out with chemo. Of course it's not that simple, but that is the gist of it. It is unclear whether or not surgery would be involved to remove as much cancer as possible first. Actually, it's unclear if I would even be a good candidate for the procedure. Apparently I will gather all that info when I meet with him, and then the two docs will talk and see what they recommend. It could be a combination of traditional chemo and this other thing (called IP if Im remembering correctly) or just traditional chemo. My head is spinning.

My abdomen is starting to swell up with fluid again, so he has ordered another drainage procedure for next week. It did help the last time, but I was really sore for several days afterwards.

So, just yuck, yuck, yuck.
 
Cheryl, I am sorry you are facing yet more chemo, possibly surgery, and another painful procedure for the fluid.

When will you see the second oncologist?

Thanks for the treasure trove of photos. They are amazing! You brightened my day for sure with these.

Its funny, but I was thinking exactly what you commented, that Carmel reminded me of parts of WDW.

Great minds think alike.

PKmom, the nutritionist is right, the best way to approach the weight issue is long term. My sister has been on WW for more than a year, and she says she has another year to go. The good thing about a longer process I think is that you really start to form the good habits about your diet that way.

On my diet a food diary was required, which also included writing down the vitamins taken, and water consumed as well as exercise. There are also websites like my fitnesspal and 3 fat chicks on a diet, and other diet/ exercise aids like fitbit. I bought one of those type bracelets for DD23 (another brand though) but it was more for tracking her sleeping and exercise than food since she is so thin.

It is never to late to start I began my diet after I turned 59 last December.

GAGWTA!
 
Cheryl - your pictures are just gorgeous and that castle is breath taking. I can see why you and smiley love Calif. so much! My dh would be like yours - in crab heaven. The woods looks awesome too. I am glad you had such a great tme on your trip. I also agree with Laurie that Carmel looks like Epcot. Reminds me of the England and Norway bldgs.

I am so sorry you have to have the chemo, possible surgery and the draining procedure again. That is sure too much on your plate for sure. I hope the procedure brings you some relief. I also hope you like the new onc. I hope they can both get together on the same page and get the best plan for you in place.
Thinking of you and sending lots of thoughts and prayers:hug:

Linda - So sorry to hear that you also have too much on your plate right now. I cant believe both your ds and dd had surgery. I had two of mine a few weeks in between ds2 procedure and that was too much on me too both physically and emotionally. The pacu nurse was asking me if I had my abdominal binder on while I was sitting next to ds in recovery watching him.
Sorry your mom is having issues too. Its so hard at that age. Also sorry about your furbaby.

Dh is home and sleeping. My L leg is really giving me problems. So much so I had to resort to using my grandmas walker. Dont know whats wrong but I dont want to go to the dr.
 





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