Dis Breast Cancer Survivors Part IV - GAGWTA

[snappy]

Yes, I do know about them. I helped my cousin in his journey with his Mom's Alzheimer's experience. She was at home for a while, and in day care, but eventually had to enter an assisted living facility with a memory care unit, i.e. a locked unit. He and I went together to see them, and I tried to attend as many care meetings as I could. She had to transfer twice to different facilities, so we saw many. My experience working in nursing homes (throughout childhood my mom worked in one, so I visited a lot; and I worked there, and at another, in high school and college) came in handy then. Fortunately, my aunt had Ltc insurance, so that helped tremendously. But my cousin did have to pay oop for some things, including a private caregiver during the day. Toward the end, the LTC was ending and he would've had to pay oop for everything, but she developed pneumonia and she passed literally the month before that was to happen. Maybe her gift to him.

We were fortunate to get LTC insurance at a reasonable cost some years back through my company. At the time, there was no medical info needed for employee, and as long as spouse didn't have a terminal illness, there was no medical info needed for them, either. So we go it then, fortunately, as it's no longer offered. I think I've increased coverage once, so far. The experience with my aunt made me realize how important it is should the need arise. A nice feature of our plan is that we can get some of the monies back if we don't use them.

 

[snappy]

Oops. Meant to say that is a great policy if you can get back premiums if you don't use the policy. Congrats on getting coverage when you did. The AICPA organization is no longer offering the policies through Prudential. We got on just under the wire but I was already 59 so my premiums are fairly high for a good level of benefits.

 

[smiley_face2]

Hi all! here are 2 pics we took while grand daughters were all here, these were on December 31. Clearly we need a selfie stick so I can be in the pictures too! first one is all the grand kids, from youngest in the snuggly being held by our oldest daughter, to the oldest, our dear sons first daughter who is standing beside me in the second pic. and of course my hubby. the weather has been really nice here since Christmas

 

[The Mystery Machine]

Update on myself...

I have decided to do the lumpectomy with radiation. Not thrilled with the idea of radiation hitting my heart and lungs.

He offered the balloon thing, but I am going to pass on that.

Surgery is scheduled for Jan. 26.

Any tips for getting a lumpectomy?

 

[smiley_face2]

Update on myself...

I have decided to do the lumpectomy with radiation. Not thrilled with the idea of radiation hitting my heart and lungs.

He offered the balloon thing, but I am going to pass on that.

Surgery is scheduled for Jan. 26.

Any tips for getting a lumpectomy?

no real tips. I ended up having 2 of them, by the time I was finished my chemo my cancer was growing back, right at the end of the surgical site. I thought it was just a lump of scar tissue forming. They believe it was because the margin was so close on that side. When the second surgeon did the second lumpectomy, (the original surgeon was on holiday thank goodness ) I told him before, I am not concerned with how I look!! I am more concerned with you taking more than enough to make sure it is all gone!! and he did. So I guess that is one tip, let them know that you are more concerned about getting good sized margins than you are about how it looks after!!! I had a very large seroma develop after both surgeries, and don't be afraid to go get them drained! it doesn't hurt and actually makes it feel so much better! I got some quite firm sports bras that hooked up in the front, 100% cotton with spandex, and wore them 24/7 they keep things from moving around and pulling and hurting, and also get a nightgown and robe, and loose comfortable clothing you can do up in the front, because you wont' be able to put your arms over your head for a while. have a few extra pillows in bed with you, one to put sort of under your side, supporting the breast that has had surgery, also so it doesn't pull at night. Don't be afraid to ask for pain meds! I had extra radiation after, because of the re occurance. and my heart and lungs are just fine! so try not to worry about it! whatever happens they can help with and the alternative is not great! If I think of anything else I will post, and if you have any more questions feel free to ask!! Very best wishes and lot's of good luck and prayers being sent your way!!

 

[smiley_face2]

Well with every US dollar costing us $1.50 and its still dropping...our trip is offically for sure cancelled! Ah well there will be another one when the time is right!! I feel very fortunate, we have been able to go on so many wonderful trips in the last 4 and a half years, to help us in the healing process of losing our son and my cancer. 5 trips to California and Disneyland, 2 of them nearly a month long, bucketlist roadtrips all over California, some with our daughter and grandson, other daughter and fiance, and our dear sons little daughters. And a dream trip to Hawaii, along with a few in our own province winetasting roadtrips. so this year is the year to stay home and go fishing, get our back yard finished to as close to the Disneyland Hotel Trader Sams tiki bar patio area, as I can get it!! LOL!! We started out tonight with a very nice dinner within walking distance of our house on the waterfront. we were treated to a beautiful sunset, dinner was delicious and it was every bit as nice as being in Monterey! our view during dinner. there is a seawall along the waterfront we walk along here. Not a bad place to be stuck!

 

[snappy]

TMM, one of our long time members here highly recommended using a bag of frozen peas after surgery as an alternative to an ice pack because it molds better to the chest.

I agree with Smiley about bras, nightgowns and shirts that open up the front, close fitting bras, but loose nightgowns and shirts. I also used extra pillows to prop up the affected side. If you have a drain, I used larger safety pins to hold the drain to my shirt/nightgown.

I would suggest wearing nightgowns and shirts that you don't mind getting soiled.

I did not have a lumpectomy personally, so I think you will get responses from others here.

thanks for the update.

 

[snappy]

Smiley, I think its is a good decision to postpone your 2016 trip for now. Maybe things will change later in the year. I am taking a break too, but I continue to enjoy reading on the disboards.

I am glad you are enjoying memories of all your wonderful trips during the last couple of years, not to mention enjoying your local restaurants. I agree the area you live in is beautiful, and that picture is priceless.

 

[Pea-n-Me]

Update on myself...

I have decided to do the lumpectomy with radiation. Not thrilled with the idea of radiation hitting my heart and lungs.

He offered the balloon thing, but I am going to pass on that.

Surgery is scheduled for Jan. 26.

Any tips for getting a lumpectomy?

So I take it your MRI was clear other than the one cancerous area? And that your cancer is on the left?

It can be a tough decision because both have pros and cons. What were your deciding factors? (Lots reading here who may be making same decision.) Are you going to have a sentinel node biopsy?

You shouldn't have to tell a surgeon about the margins they need - they already know, that's what they do! I think when they're actually in there, it's not exactly easy to tell, given living tissue and all, and remember, the tissue taken out is sent to the lab, and pathologists determine whether the margins were sufficient, so it's not just one set of eyes studying it. That said, it's not a perfect science; more of an art at times. Anyway, this may be the one time you're happy to have ample breasts (if you do) as there is more tissue to work with. I had a friend who was rail thin with tiny breasts and eventually wound up with a mastectomy (which she was devastated about) simply because they had to go back in for margins a couple of times and on the third time, there wasn't enough tissue left to work with. I myself had good margins all around on first time (chose an excellent surgeon, as I said before), and never had to go back. Radiation is supposed to clean up any cells left over locally if there are any, so again, choose a great radiation oncologist.

After my lumpectomy, a lot of fluid developed under my arm (where the nodes were removed; I had eight out total, since my first was positive) and I had to have it drained every few days. That was annoying. It felt like I had a banana stuck under my armpit, lol. And I also developed a hematoma in my breast that never healed (because I had to start chemo just about right away), and has since turned into a seroma (a hardness on the inside) and it can be uncomfortable sometimes, but it's not really a big deal in my life. I do feel some changes from the radiation (mine was on the right) if I laugh really hard I sometimes get a cramp that takes my breath away for a minute, lol, but again, not a huge deal. I loved the group of people I had for radiation, and the place itself (it had snacks!) and same for my chemo group. I considered them one of the "good things" about having cancer, as I always considered this group here, as well. I did get some pretty bad burns during radiation, and I was tired, especially just coming off chemo and having little kids and a puppy at home, but it was relatively short term.

 

[The Mystery Machine]

I am allergic to most pain meds, so they are going to give me percocet and see if that is OK. Not looking forward to that.

I guess I have to go shopping for some bras and nightgowns.

As far as deciding factors, I went with lumpectomy & taking out the radial nodes along with the longer radiation plan due to the current success rate of it.

I know the new thing is the "balloon deal" where the radiation is localized. Oncologist said the results are promising however the data only goes back 5yrs so I decided on another approach.

Hoping it stays the course but as you guys know that all can change when you have the surgery.

 

[smiley_face2]

Lot's of good advice there Peanme! and yes hematoma is what I meant in my post, which for me has also turned into a seroma which like you is uncomfortable some times. It's funny, the ongoing uncomfortable feelings, sometimes pain, just become such a normal part of your life you kind of don't even think about them! just deal with it. The new normal we talk about. If someone had told me all of it before.....I would have been distraught thinking I could not do it! but you do it....one day, sometimes one minute at a time, and I think we are all a lot stronger than we think we are!! So many people have told me how brave I am...lol! you just do what you have to do!

 

[The Mystery Machine]

Did you guys take tamoxifen? The recommendation is to take it for the next 5-10 yrs?

Looks ugly on paper with the side effects and all the other stuff.

 

[smiley_face2]

Sorry Peanme for saying snappy in my last post! I had aggressive triple negative cancer, so after the radiation, there is nothing else they can do. you just cross your fingers and pray! I used to make myself ill reading about all the possible side effects of the chemo and radiation, and while the chemo made me super sick, and I did lose my hair and a lot of weight, a lot of the horrible side effects I scared my self with never happened. My oncologist told me to stop seeing Dr Google.

 

[Pea-n-Me]

Did you guys take tamoxifen? The recommendation is to take it for the next 5-10 yrs?

Looks ugly on paper with the side effects and all the other stuff.

Smiley and I were both triple negative, so no tamoxifen. There are others here who were on it, though - I'm sure they'll respond.

 

[The Mystery Machine]

Smiley and I were both triple negative, so no tamoxifen. There are others here who were on it, though - I'm sure they'll respond.

That is a new one for me. I was reading up on triple negative however do you find out if you are triple negative?

 

[Pea-n-Me]

Haha they study the tissue. Did it say on your biopsy report? Look for ER/PR/Her2Neu status - it might not be on there tho, may have to wait till it all comes out. They develop a plan specific to you once they have all the info.

 

[Pea-n-Me]

No prob Smiley! I love your perspective on your trips!

 

[The Mystery Machine]

Haha they study the tissue. Did it say on your biopsy report? Look for ER/PR/Her2Neu status - it might not be on there tho, may have to wait till it all comes out. They develop a plan specific to you once they have all the info.

Gotcha. Thanks Pea.

 

[snappy]

I took tamoxifen for the 5 year course. Like you, I researched it on google and in a number of books from my local cancer services library and the public library. I was concerned but went with it anyway, since my doctor recommended it, and I had a lot of confidence in him.
I had no issues. I did go immediately into menopause, but that could have been a function of my age of 50 at the time, not sure about that at all.

 

[Dancind]

I'm not getting updated by DIS that there are new posts. hmmmm

MM, I had a lumpectomy last June, with brachytherapy in July. My second go round, the first time was in 2012 with the other breast. My Dr wanted me to do the localized radiation because it was my left breast, and I was eligible. Mine was with tubes. Not fun, but over relatively quickly. I have my first mammo at the end of this month.

My tips: go to Walmart and get some cheap, stretchy snap front sports bras in at least one size bigger, maybe two sizes. There will be dressings and probably swelling to accommodate, and you will need them for radiation too. I still wear mine around the house. Second, put some band aids on your torso, leave them a day, then take them off. Adhesive allergies are very common in the torso area and can leave raw wounds that hurt more than anything else. If you react to the bandaids at all, ask for paper tape after surgery.

I was ER positive both times, and have not taken the meds. I already have immune stuff with joint pain that I keep under control with diet and don't need it to be worse. I do take Indole 3 Carbinol, and my lab tests have shown low Estradiol with it. It's a very individual decision and like Snappy, some do fine on the meds.