Dis Breast Cancer Survivors Part IV - GAGWTA

[maxaroni]

Yes I am in North NJ. The minute I knew I had to have a biopsy I knew I wanted to go to CTCA if it was cancer. Second choice probably would have been Hackensack or a satellite of MSK but I knew CTCA was where I felt I had to go. There was a point where we weren't sure our insurance would allow it and I was frantic over it. I feel relieved when I walk in those doors because the stress is off my shoulders when I am there. I do nothing but go where they say. I don't make appointments, I don't have to call my insurance and get preauthorizations, I don't have to drive to one place for labs, another place for an MRI and most important, I don't have to wait long for results. I can see everything but biopsy results within minutes, even pet scan results Biopsy results take a few days but I saw those before my surgeon even had a chance to call.

Oh my goodness, that sounds wonderful. Not convenient to get to but once there, to be a "one stop shop" is great. If you are pleased with it, comfortable and at peace with this decision, it is the right one for you. You need to be where you feel comfortable as this journey is a tough one. I know Hackensack Hospital as I am from Ridgewood, husband from Paramus. However, it sounds as if CTCA is right for you. When my mom was going through chemo and radiation for her first bout of cancer, I swear she had an ice cap to perhaps keep her hair from falling out. Only recently have I read about that and it seems to be a new thing. Mom didn't lose her hair so not sure if the cap worked, or she was fortunate, or her particular cocktail wasn't one that it was a given to lose hair. Her doctors were out of Valley Hospital.

I am so sorry you need to go through this. Continued thoughts and prayers.

 

[luvmarypoppins]

Well this is the bad news but trying to find some good news post

The good, well as good as can be, so we are taking it. The PET scan only showed my cancer is confined to the R side of the neck and only in that one lymph node, but really bad. Last time the post surgical biopsy showed 5 lymph nodes that were not on the pet scan so you never know anyway till the final path.
Good -Dh and I really liked the new rad. onc. He did some school at Sloan Kettering. Very knowledgeable and answered all our questions.
The endo and him have already consulted. I think he likes me because I am such a challenge but unfortunately not in a good way. They both agreed I need a R neck dissection.

He said since my blood tests were good but the biopsy and sonogram were bad it is very troublesome that they cannot in the future use the blood tests as a cancer marker so they will have to see how they will track my cancer taking scans/radiation exposure into consideration
Bad -he said in medical school he only heard one of his professors talk about a case and a patient like this. Gheesh, of course I am now his only case of this ever, and he agrees just my normal regular aggressive cancer is rare enough to deal with.

I am now prepping for a scan I will have in 2 weeks. Have to be on a special diet, then get 2 shots 2 days apart and then the scan another day. They will send me back to him for the results after it is done in the hosp. on another floor. Not him, but the nurse said most likely I will not test out good on the scan since I already had a high dose of radiation and now the cancer is back so the radiation did not give the desired result the first time anyway.

So there was mention of external beam radiation as an option at some point if necessary, sigh. If I test good then after surgery I will have a very high dose of radiation again, this in a pill to swallow,

He agreed with me about my concerns for a secondary leukemia which is a possibility if I do get the high dose of radiation again.

All I can say is I am glad I always have my faith. Going to cancel the adrs for our trip today, such is life

Other stuff - My dh just found out he will be keeping his job for the upcoming year, so that is a blessing because we will really need the health ins now. Ds3 saw Aladdin on Broadway and liked it and ds2 if off on a cruise with the gf.

GAGWTA

 

[The Mystery Machine]

Many hugs to you LMP.

 

[Dancind]

Prayers and Pixie Dust for you, LMP. Glad to hear your DH will have a job and insurance coverage, I assume.

 

[Pea-n-Me]

Thanks for the update, lmp. Ongoing prayers for you. I'm glad you like your doctor.

 

[fortwildernessishome]

Well this is the bad news but trying to find some good news post

The good, well as good as can be, so we are taking it. The PET scan only showed my cancer is confined to the R side of the neck and only in that one lymph node, but really bad. Last time the post surgical biopsy showed 5 lymph nodes that were not on the pet scan so you never know anyway till the final path.
Good -Dh and I really liked the new rad. onc. He did some school at Sloan Kettering. Very knowledgeable and answered all our questions.
The endo and him have already consulted. I think he likes me because I am such a challenge but unfortunately not in a good way. They both agreed I need a R neck dissection.

He said since my blood tests were good but the biopsy and sonogram were bad it is very troublesome that they cannot in the future use the blood tests as a cancer marker so they will have to see how they will track my cancer taking scans/radiation exposure into consideration
Bad -he said in medical school he only heard one of his professors talk about a case and a patient like this. Gheesh, of course I am now his only case of this ever, and he agrees just my normal regular aggressive cancer is rare enough to deal with.

I am now prepping for a scan I will have in 2 weeks. Have to be on a special diet, then get 2 shots 2 days apart and then the scan another day. They will send me back to him for the results after it is done in the hosp. on another floor. Not him, but the nurse said most likely I will not test out good on the scan since I already had a high dose of radiation and now the cancer is back so the radiation did not give the desired result the first time anyway.

So there was mention of external beam radiation as an option at some point if necessary, sigh. If I test good then after surgery I will have a very high dose of radiation again, this in a pill to swallow,

He agreed with me about my concerns for a secondary leukemia which is a possibility if I do get the high dose of radiation again.

All I can say is I am glad I always have my faith. Going to cancel the adrs for our trip today, such is life

Other stuff - My dh just found out he will be keeping his job for the upcoming year, so that is a blessing because we will really need the health ins now. Ds3 saw Aladdin on Broadway and liked it and ds2 if off on a cruise with the gf.

GAGWTA

I don't post here often and haven't for a long time, but, I do follow along. I just want to say how sorry I am that your cancer has reared its ugly head again. Since you are a woman of faith, as am I, I will include you in my daily prayers. Best of luck in the coming weeks/months.

 

[fortwildernessishome]

When my mom was going through chemo and radiation for her first bout of cancer, I swear she had an ice cap to perhaps keep her hair from falling out. Only recently have I read about that and it seems to be a new thing. Mom didn't lose her hair so not sure if the cap worked, or she was fortunate, or her particular cocktail wasn't one that it was a given to lose hair. Her doctors were out of Valley Hospital.

I have read about this ice cap, but have never heard of anyone doing it. I hated losing my hair and would have loved to have had a chance to try this. It wasn't offered when I went through chemo 5 1/2 years ago. Seems like a neat technology that could help with such an unpleasant side effect of chemo.

 

[Feralpeg]

LMP, sorry that the results were not better. We are here for you! Prayers to you!

 

[TheIncredibles!]

I have read about this ice cap, but have never heard of anyone doing it. I hated losing my hair and would have loved to have had a chance to try this. It wasn't offered when I went through chemo 5 1/2 years ago. Seems like a neat technology that could help with such an unpleasant side effect of chemo.

I'm doing the Dignicap. I am 5 days past my second dose of Taxotere/Cytoxan. I have hair but probably down to about 30%. I had very thick hair to begin wit. I am hoping it stops sooon otherwise the cost and the pain and discomfort will be for nothing

 

[kittylady1972]

I had no idea this thread existed...but now that I've found it I guess it's time to post.

ME: Age 45, wife and mom of three kids ages 17, 14 and 12....and newly diagnosed with breast cancer after a biopsy on April 10th.

Just lost my mom in February after her long battle that began with breast cancer in late 2005...and ended with lung cancer diagnosed in Feb 2012 that spread to her brain in November of 2016...coincidentally right after her last WDW trip with the whole family.

So I'm a bit lost..not having her to talk to about all of this. Scary stuff. All of it. We leave for our next Walt Disney World trip in just over 30 days.

I'm scheduled for a lumpectomy and sentinel node removal/biopsy on May 15th...and then we leave on May 26th. I suppose I'll return and begin radiation and possibly other treatments to be determined.

So it may take me a while to get to know some of you here...but I'm hoping to contribute in some way and hope I can help others in any way possible. Plus it's just nice to find a group who understands my daily struggles.

 

[The Mystery Machine]

Welcome Kittylady!

Here is what I recommend since you have not had surgery yet. Go see a Lymphedema PT and get measurements (arms esp and have it documented) and speak with them about HOW to go about taking care of yourself after surgery. Some surgeons have it as part of their PRE treatment plan, most do not.

It is something that every breast cancer patient should do imo. So I am going to throw the info out there for you.

I have complications with swelling during my treatments and after. I wish I had my original measurements of my arms and legs. I am at lymphedema stage 1 now.

When they remove your node you become stage 0 lymphedema.

Also since you are going to Disney you need a compression sleeve, esp. if you fly. If you are flying make it a point to pressure the doctors to get you in to see the lymphedema PT and get that compression sleeve.

I am so sorry for your mom and your diagnosis. If you already know all of this then you are ahead of the game.

Sending you many HUGS!!!

 

[kittylady1972]

Welcome Kittylady!

Here is what I recommend since you have not had surgery yet. Go see a Lymphedema PT and get measurements (arms esp and have it documented) and speak with them about HOW to go about taking care of yourself after surgery. Some surgeons have it as part of their PRE treatment plan, most do not.

It is something that every breast cancer patient should do imo. So I am going to throw the info out there for you.

I have complications with swelling during my treatments and after. I wish I had my original measurements of my arms and legs. I am at lymphedema stage 1 now.

When they remove your node you become stage 0 lymphedema.

Also since you are going to Disney you need a compression sleeve, esp. if you fly. If you are flying make it a point to pressure the doctors to get you in to see the lymphedema PT and get that compression sleeve.

I am so sorry for your mom and your diagnosis. If you already know all of this then you are ahead of the game.

Sending you many HUGS!!!

Thanks for the advice. I'll definitely ask about it. I'll talk to my primary doc on Monday during my pre-surgical and see what she suggests. Then I'll look into it for sure. I've been reading a lot about it anyway, just because I play tennis and I'm trying to determine how long I'll need to wait before resuming that after surgery...and if there is any way I can even consider during anything like that during radiation. It sounds like probably not because I'm not exactly a "small" woman there and the support I'd need to play will probably be too painful during radiation to wear.

Thanks for the welcome.

 

[The Mystery Machine]

Thanks for the advice. I'll definitely ask about it. I'll talk to my primary doc on Monday during my pre-surgical and see what she suggests. Then I'll look into it for sure. I've been reading a lot about it anyway, just because I play tennis and I'm trying to determine how long I'll need to wait before resuming that after surgery...and if there is any way I can even consider during anything like that during radiation. It sounds like probably not because I'm not exactly a "small" woman there and the support I'd need to play will probably be too painful during radiation to wear.

Thanks for the welcome.

Many doctors are NOT savvy when I comes to swelling, period. Pick up the phone and tell doc to make you an appt. with the lymphedema PT. That you insist on a pre-screen from them. This is a real thing and surgeons are starting to get on board and include this as part of their plan. Most are not. Don't let them tell you "no" or steer you away from this.

If I could start a charity group or foundation this would be my slogan...Get Measured, It's Easy! or Save Your Baseline! (Baseline being your original measurements. It is your only solid science data if you start having an issue. Once you have surgery your baseline no longer exists.) The lack of knowledge is scary out there. In fact I came across many specialist who had no idea what I was talking about.

I am finally at a cancer center that is trying to figure out how help me. So far they have been great. I changed doctors on my yr check up which was in Jan. The OT intake doc told me she loves a challenge and that she is working with others with swelling issues. (Thank Goodness!)

I know I come on strong but I am passionate about this topic since I have swelling issues due to radiation treatment. Just trying to pass along my experience. It is an eye opener.

 

[Straitlover]

Thanks for the advice. I'll definitely ask about it. I'll talk to my primary doc on Monday during my pre-surgical and see what she suggests. Then I'll look into it for sure. I've been reading a lot about it anyway, just because I play tennis and I'm trying to determine how long I'll need to wait before resuming that after surgery...and if there is any way I can even consider during anything like that during radiation. It sounds like probably not because I'm not exactly a "small" woman there and the support I'd need to play will probably be too painful during radiation to wear.

Thanks for the welcome.

Welcome!

If I remember correctly, my sister was told not to wear a bra at all during her radiation (also no deodorant/antiperspirant!). I didn;t do radiation because I had a mastectomy, so I can't say for sure.

Going to WDW so soon after your surgery, you will need to be careful on rides. Personally, I would avoid anything that shook me around too much.

Good luck!

 

[luvmarypoppins]

kittylady - welcome, but sorry you have to be here. The ladies here are a \great source of information, strength and encouragement. I admire them all. I just hang out here but I have thy cancer and am now dealing with a recurrence. Sorry also about your mom. I always wished my mom was here to to give me a hug or talk too during all of this. You are very brave to go on your trip so soon post op. We also have a trip scheduled for the end of May, just dh and I since our kids are adults. My heart really is not into the trip and I know I said I would cancel the adrs but I am finding it hard to do yet. The only one anyone would really want is a BOG dinner anyway. Wishing you all the best with your surgery

Mrs Incredible - I am seeing what you mean about everything under one roof, that is what I have basic really had for my first journey but now I am going out of the umbrella with a new surgeon so to speak, so I am losing one aspect of my cancer care team but I still have the rad. onc. and endo on my side.

I know we say do not bleed until you are shot, but I am doing some online research if my test turns out bad next week so I can ask the rad. onc. some informed questions. The information online is not very encouraging. I also saw him look at me with a look I didnt like. sigh.

I never got a call back from my endo to speak about surgeons after the test, so I had to call again, second time. They said August, I said, no, She said what are you being treated for, I said cancer and this is urgent we need to talk surgeons, so we are going to see her May 9th. I am sure she will be the one to set all this up once I pick the surgeon since she will have to send all my records over to him/her. Advocating for myself here.

Send prayers and hugs, I could sure use them.

GAGWTA

 

[leebee]

Send prayers and hugs, I could sure use them.

GAGWTA

Hi, LMP- I lurk here a lot, sometimes post as cancer seems to run in my family. I just wanted to say how sorry I am to hear of your issues, and that I am sending big hugs and prayers!

 

[Pea-n-Me]

Welcome, Kitty. So glad you found us! So nice of you to think of helping others during your own health crisis. Hopefully we can be there for you.

Lmp, glad you are advocating for yourself. I wouldnt cancel the ADRs just yet, either. You are in that awful stage where you don't have many answers yet. I think you will have an excellent team where you are and they will do a good job for you. You are going to break some more records there, for sure! You hang in there. Google is not your friend right now, and you know it. Stick to the WDW stuff!

 

[kittylady1972]

Welcome!
If I remember correctly, my sister was told not to wear a bra at all during her radiation (also no deodorant/antiperspirant!). I didn;t do radiation because I had a mastectomy, so I can't say for sure.
Going to WDW so soon after your surgery, you will need to be careful on rides. Personally, I would avoid anything that shook me around too much.
Good luck!

Yes I plan to avoid the bumpier rides for sure...and that's okay with me. I've been plenty, and will be going back, so I'm okay sitting out this time...I will just be happy to be in the parks.

kittylady - welcome, but sorry you have to be here. The ladies here are a \great source of information, strength and encouragement. I admire them all. I just hang out here but I have thy cancer and am now dealing with a recurrence. Sorry also about your mom. I always wished my mom was here to to give me a hug or talk too during all of this. You are very brave to go on your trip so soon post op. We also have a trip scheduled for the end of May, just dh and I since our kids are adults. My heart really is not into the trip and I know I said I would cancel the adrs but I am finding it hard to do yet. The only one anyone would really want is a BOG dinner anyway. Wishing you all the best with your surgery

Send prayers and hugs, I could sure use them.

GAGWTA

Sadly I always figured I'd end up here...eventually...in the world of cancer because of such a strong family history of it on both sides. I just thought it would be later in life as I'm the youngest that I know to get it...at least of the relatives I know about. I spoke to my nurse navigator during my initial visit who told me NOT to cancel my trip...but that was when we thought I'd have surgery about a week earlier. At this point I still think I'll be okay to go, just may have to take it a bit easier, and that's okay. This trip was more about relaxing at the resort, doing some park time here and there, and I think we can manage that.

I hope you can take your trip also. I'll be keeping you in my thoughts for sure.

Welcome, Kitty. So glad you found us! So nice of you to think of helping others during your own health crisis. Hopefully we can be there for you.

Thanks so much for the welcome. I am thankful for the support and plan to return the favor.

 

[rajak73]

The ladies here are a \great source of information, strength and encouragement. I admire them all.

Not all here are ladies, LOL, just wanting to send you and keeping you in our prayers.

Welcome Kittylady1972, my DW had the same thing as you, she never had any swelling after surgery, actually 2 surgeries, they didn't take enough the first time, but if you search some of lovetinks posts on here, her arm swelled pretty bad. Where they took the node is still a little sore but our DS is physical therapist so gave her some exercises to do.

 

[kittylady1972]

Not all here are ladies, LOL, just wanting to send you and keeping you in our prayers.

Welcome Kittylady1972, my DW had the same thing as you, she never had any swelling after surgery, actually 2 surgeries, they didn't take enough the first time, but if you search some of lovetinks posts on here, her arm swelled pretty bad. Where they took the node is still a little sore but our DS is physical therapist so gave her some exercises to do.

Ahh...good to know and thank you!

I've already made it clear they should take as much as they want PLEASE to get clear margins. I don't care what I end up with afterwards really...as long as what is there now is gone!