Dis Breast Cancer Survivors Part IV - GAGWTA

[The Mystery Machine]

I am so sorry smiley. Many hugs to you.

I am hanging in there and going to doctors and getting tests.

So far my rap sheet is...

Liver enzymes are up, cholesterol is up, I have a "bacterial overgrowth" in my small intestines so they want me to take an antibiotic for that. Just got that info yesterday after doing a hydrogen breath test on Monday.

Had an abdominal cat scan last month which revealed benign cyst on my kidney, 3cm fibroid somewhere, fatty liver.

I am seeing 2 more docs this week, cardiologist tomorrow and specialist on Friday.

Cardiologist #1 was not a good visit as he flat out refused to believe I had lymphedema. It is just mind blowing however I have to just take the bump and move forward.

 

[Pea-n-Me]

What was his rationale, TMM? (I don't know if you saw I PM'd you.)

Sorry to hear you're having these issues, too, Smiley. Is there any way you could've fallen on that side?

I've been in touch with Snappy and she is doing ok in her area that's flooded. Leave it to her, doing some volunteer work too.

GAGWTA

 

[Dancind]

Janet, I am so sorry to hear this. Praying that it is just the swelling. Please do let us know. If I could find that hug emoji I would insert it here.

 

[luvmarypoppins]

Janet - sending you lots of prayers. Sorry you are dealing with this That is from all of us!

TMM - hope you can get some answers

Laurie - Prayers for you and all those affected by this terrible flooding.

Linda - I am sure your ds and dd are getting excited about college

I have a month before my endo visit so I need to make my appt. testing in the next couple weeks or sooner. My dh is home from his trip and told me he is going back again in a couple weeks. Such is life. Ds3 had fun in Las Vegas. He went to see 2 Cirque du Soleil shows. I think he got hooked after him and I went to the one at Disney Springs. Ds3 got floated to the ER today. That should make for an interesting day! He said its swamped there so they asked for more nurses.

GAGWTA. Thinking of you all.

 

[gottaluvPluto]

I have a quick question. I meet a girl that found out she has breast cancer and they told her she was stage one. Her husband freaked out and demanded a PET scan. The doctor refused so they paid out of pocket ($20,000) for a PET scan to make sure the cancer didn't spread. Well, they found out the cancer spread to her liver. Anyway, when a doctor finds out you have cancer, don't they do a PET scan automatically and doesn't the insurance pay for it?

 

[luvmarypoppins]

I have a quick question. I meet a girl that found out she has breast cancer and they told her she was stage one. Her husband freaked out and demanded a PET scan. The doctor refused so they paid out of pocket ($20,000) for a PET scan to make sure the cancer didn't spread. Well, they found out the cancer spread to her liver. Anyway, when a doctor finds out you have cancer, don't they do a PET scan automatically and doesn't the insurance pay for it?

I didnt have breast cancer but thyroid cancer and I already had two tumors that were pretty visible, the smaller one popping out of the L side of my neck. I first saw a thoracic surgeon because they thought the larger tumor was in my chest and she was the one who ordered the PET scan.

Then I saw the ENT surgeon and he said he was more worried about the things he couldnt see. The PET scan showed it was only the two tumors in my neck at that time and they were worried it was going to go to my lungs because it was so aggressive.

My ins. paid for it.

Sorry to hear about your friend. I hope they get a good treatment plan in place.

 

[Pea-n-Me]

I have a quick question. I meet a girl that found out she has breast cancer and they told her she was stage one. Her husband freaked out and demanded a PET scan. The doctor refused so they paid out of pocket ($20,000) for a PET scan to make sure the cancer didn't spread. Well, they found out the cancer spread to her liver. Anyway, when a doctor finds out you have cancer, don't they do a PET scan automatically and doesn't the insurance pay for it?

How do they know that what they found in the liver is actually cancer? Did the do a biopsy? Please let us know on that one.

It's a little hard to answer these because things can often be really complicated, but I'll try.

I think it depends somewhat on whether they believe it's likely to have spread. In the "early stage" cancers, which would include Stage 1, it's usually unlikely, so maybe they didn't feel it was warranted. The data they would be going by to determine the need would be in the staging (see below).

Today there is pressure on doctors to not order more tests than are necessary, etc.

Also the tests aren't always 100% accurate - there can be false positives, and false negatives. Results can trigger new tests and worry. (And sadly, studies have shown that finding out information, when it comes to breast cancer, doesn't always make a difference in survival time. )

Here's how they stage:

http://www.breastcancer.org/symptoms/diagnosis/staging

 

[gottaluvPluto]

How do they know that what they found in the liver is actually cancer? Did the do a biopsy? Please let us know on that one.

It's a little hard to answer these because things can often be really complicated, but I'll try.

I think it depends somewhat on whether they believe it's likely to have spread. In the "early stage" cancers, which would include Stage 1, it's usually unlikely, so maybe they didn't feel it was warranted. The data they would be going by to determine the need would be in the staging (see below).

Today there is pressure on doctors to not order more tests than are necessary, etc.

Also the tests aren't always 100% accurate - there can be false positives, and false negatives. Results can trigger new tests and worry. (And sadly, studies have shown that finding out information, when it comes to breast cancer, doesn't always make a difference in survival time. )

Here's how they stage:

http://www.breastcancer.org/symptoms/diagnosis/staging

I truly don't know her that well and didn't ask a lot of questions. I mostly listened to her. From my understanding, the PET scan showed the breast cancer spread to her liver and now the staging went from stage 1 to 3 or 4 (not sure, she was very upset while we were talking). I was just shocked the doctor didn't want to do a PET scan. I don't know if I like these new guidelines of less tests.

Thanks for answering the question!

 

[Pea-n-Me]

I truly don't know her that well and didn't ask a lot of questions. I mostly listened to her. From my understanding, the PET scan showed the breast cancer spread to her liver and now the staging went from stage 1 to 3 or 4 (not sure, she was very upset while we were talking). I was just shocked the doctor didn't want to do a PET scan. I don't know if I like these new guidelines of less tests.

Thanks for answering the question!

Sure. That's sort of a painful story, wow. I hope they somehow find out it's not cancer in the liver.

 

[Pea-n-Me]

Just doing a quick search around

http://breast-cancer.ca/petscanners2/

"On the whole PET imaging is not used for initial screening purposes, and has relatively small role with respect to primary breast cancer."

 

[The Mystery Machine]

What was his rationale, TMM? (I don't know if you saw I PM'd you.)


GAGWTA

His rational was the old stereotype of what lymphedema is, which are large limbs. In short he knew zip.

I saw my dh's cardiologist yesterday. He is interested in following me, which seems to be STEP ONE when you have a disease. At least he stated he knows nothing about it, which is the case for 99% of the doctors out there.

He ordered a stress echo and said if I can pass that he believes that any "drainage" that my lymphedema PT wants to do is OK. I have a Flexitouch pump and then there is MLD or manual lymph drainage.

Lymphedema is a dirty little secret in cancer treatment and is mostly ignored by surgeons and oncologists.

Make sure to get measured before your surgery and treatments from a Lymphedema PT. They are the fighters and advocates right now. We need more doctors on board backing them up. Protect your baseline.

Enough of that soapbox, lol.

Today I am seeing the specialist. He is a plastic surgeon that has taken on the cause of people with primary and secondary lymphedema as well as lipedema. I hope he tells me something I don't know.

 

[Pea-n-Me]

His rational was the old stereotype of what lymphedema is, which are large limbs. In short he knew zip.

I saw my dh's cardiologist yesterday. He is interested in following me, which seems to be STEP ONE when you have a disease. At least he stated he knows nothing about it, which is the case for 99% of the doctors out there.

He ordered a stress echo and said if I can pass that he believes that any "drainage" that my lymphedema PT wants to do is OK. I have a Flexitouch pump and then there is MLD or manual lymph drainage.

Lymphedema is a dirty little secret in cancer treatment and is mostly ignored by surgeons and oncologists.

Make sure to get measured before your surgery and treatments from a Lymphedema PT. They are the fighters and advocates right now. We need more doctors on board backing them up. Protect your baseline.

Enough of that soapbox, lol.

Today I am seeing the specialist. He is a plastic surgeon that has taken on the cause of people with primary and secondary lymphedema as well as lipedema. I hope he tells me something I don't know.

Good luck! Be sure and update us!

 

[Dancind]

I've had BC twice, and never had a PET scan. Really don't want one, too much radiation. I had clear lymph nodes.

TMM, my surgeon's office measures my arms at my visits. All my lymphedema is on my torso. Sometimes it feels like a big upper band is tightening around my upper torso, but I know lots of people who have had surgery get that. I'm so sorry this is going on, but it sounds like you are making progress.

 

[smiley_face2]

Hi all again! Things are looking a lot better!! The bruising is turning yellow now which is literally the whole breast down onto my ribcage, and around my side! The red went to purple now onto yellow. Swelling is way down! I am also feeling a lot healthier! So yes, Pea n me, I think it was an injury from being at the beach with the grand kids. The 18 month old, our little Ava, she is my little mini me!! She is very unsteady on her feet and wants me to pick her up all the time. I dont know what, but I must have injured myself in that way. That was such a huge scare! But also opened my eyes to the fact that I am more tender than I used to be! I am due for my annual mri in a month, so i am comfortable waiting for that. Last years was so bad, but they told me not to be afraid to cancel if I am at all not feeling well. i have lost 20 lbs since then too, and my hiatus hernia is soooo much better! So I will give it another go and press the button as soon as I start to have a hard time if I do! In the meanwhile I wait for physio to call me, and see my oncologist next week.
I have also never had a PET scan, even with very aggresive triple negative cancer that reoccured after chemotherapy. My sister had one, but she had a secondary lung cancer after her primary breast cancer. She also went on to have stomache cancer which she has gotten through now! She is a tough lady!
Tmm I hope you are finding something to take your mind off if it all, give you a break? I think that is just as important as the actual medical treatment!
Diana, any closer to a move to Oregon?

 

[smiley_face2]

My little Ava and I at the park today!

 

[Pea-n-Me]

My little Ava and I at the park today!
View attachment 188689

Oh my, she is a mini me! And adorable! You look great, too. Glad things are looking up!

 

[Dancind]

Oh my goodness, what a cutie! So much joy in that photo. So glad you are feeling better.

DH turns 65 in three years, that's when we are aiming for. He has so much work now by word of mouth he wants to keep going as long as he can. That gives us three more years for nice trips too! Once we move we will need to scale down on expenses.

And thinking we will move to WA, seems a bit more affordable than OR. We might be able to share a bottle of wine sometime!

 

[smiley_face2]

Oh my goodness, what a cutie! So much joy in that photo. So glad you are feeling better.

DH turns 65 in three years, that's when we are aiming for. He has so much work now by word of mouth he wants to keep going as long as he can. That gives us three more years for nice trips too! Once we move we will need to scale down on expenses.

And thinking we will move to WA, seems a bit more affordable than OR. We might be able to share a bottle of wine sometime!

Don't forget there is no sales tax in Oregon! and gas is a lot cheaper! lol! But the cost of housing is pretty steep in both Oregon and Washington. You will have to travel up into the Okanagan in BC then! There are a lot of amazing vineyards there! We can meet up in Osoyoos!
I am feeling better, but oh so so tired!! The girls go home on wednesday, that's a long trip into the city for us and I plan on sleeping in and staying in my pyjamas for at least 2 days after that! then I have to clean the house properly and do all the beds etc. no rest for the wicked my mom used to say! Lol!!!
I am a year older than my hubby, so will get my pension before him. I plan on buying a camper with my pension! lol! it has been my dream for at least 20 years, that we would get one and travel all over north america! Life is what happens when you are busy making other plans though. I also still have 8 years to wait for it.

 

[smiley_face2]

Oh my, she is a mini me! And adorable! You look great, too. Glad things are looking up!

thankyou! her personality is a lot like mine as well! and the fact she would rather snack on savoury things than sweet! when going out, she has to have her choice of nice shoes to wear, and a hat! she will soon have her brothers totally under control! Lol!!!

 

[gottaluvPluto]

Thanks for the replies. Everyone I know that has cancer gets PET scans and CT scans. I just thought it was odd that they didn't do it for her and wondered if this is the new norm. My aunt has stage 4 breast cancer and gets PET scans and CT scans. She gets the PET scans every 6 months and the CT scans every 3 months (maybe it's because she is stage 4). BTW, she is cancer free right now. She is on herceptin, prejuta (something like that) and does/did a vaccine.