Starting Chemo March 2015

pboi

Thx for your input, everyone. I'm leaning toward waiting. I just started thyroid meds too, though so far don't seem to have any side effects from that.

PB

rleepac

Generally we say that people aren't infectious anymore after being on antibiotic eye drops for 48 hours. That's when I allow people to return to work. Don't know if it would be different for chemo patient though. Always safer to ask your MO just in case.

rleepac

PB - definitely wait until your thyroid is dialed in or you won't know where your symptoms are coming from!

rleepac

So I met with MO a week ago and we talked about my upcoming BMX. He has mentioned the 'Angelina Jolie Effect' several times and it pisses me off. I don't give a shit what Angelina Jolie did with her breasts, or why...I have been diagnosed and have my own unique situation for why I'm doing BMX. Why does he keep bringing up Angelina Jolie?!? Good thing he's not my breast surgeon or I'd have to fire his ass!

End of rant. Carry on.

Bekah

Jackbirdie

Bekah- it is SO annoying that our ability to research, digest, and decide on our own is trivialized because of a celebrity. It seems they are the ones affected/impacted by her actions. Not us! Grrrrr. They just don't get it. If they didn't get paid more to take them both I wonder if they wouldn't try even harder to sway us.

I realize it was your MO that said this, but I got similar from my BS. I wanted to tell him to just shut it but I was a bit afraid the knife might slip while I was under.

rleepac

It's so stupid....he mentions it and then quickly says "not that it applies to you"...then why did you mention it?!?

Jackbirdie

Exactly. They should realize how fragile we are at that point in the program and that even little things they say can suggest doubt. Not cool. They need to zip it. I wonder if anyone with female MOs and BSs get this Angelina bs. I know that just being female doesn't necessarily improve care or the relationship from cases like Allison's and others. But in this one point..... I do wonder.

ksusan

I have gotten none of that nonsense from my male BS or female MO or RO.

Italychick

It amazes me that the doctors (MOs and breast surgeons and ROs) that want us to do chemo and use the big guns to prevent any recurrences or metastasis can then act like a double mastectomy is overkill. It just burns me up. They aren't the one who is faced with potentially years of testing, biopsies, stress, psychological terror, worry, etc. I just read a bunch of posts on a forum about what women go through after a lumpectomy - the multiple biopsies, testing, worry, etc. No doctor has the right to second guess a woman's choice to do what is necessary for her mental and physical health.

Our bodies, our choice, and screw him!

shaz101

specialk. Thankyou that makes sense to have them separate. Iv been pulling my thumb out and pulling the sleeve back to wash my hands. But i guess itll also stretch them quicker and boy they are expensive.

thanks katy for everything! Im feeling much better today. The first rad session went well. The people at the centre are so nice. Its probably the first time I haven't felt like I was being rushed though. I'm so pleased that youve turned te corner. It must have been so scary being that sick. Xxx

bekah im sorry that you have to listen to that crap! Its your body and your decsion.

theresa your hair is making a comeback! So pleased for you. Lee im glad that you're starting to improve.

Diane...where are you? Thinking of you.

SueH58

My female BS said she'd do whatever. If the patient wanted them both "taken off" she would do it for the very reasons Theresa outlined. 

Trvler

I don't know. I kind of see it. I noticed that a lot of women that have really tiny tumors or even DCIS go right for the mx. If I could do a lx, you better believe I would in a heartbeat. I get the whole not wanting to be worried all the time but I would start there if I could.

Trvler

And just for the record, my tumor is not 3 cm. I have at least 5 cm of multiple places and ILC which was why I opted for the mx.

Trvler

Bekah: I guess I should have asked in what context did your doctor mention that? WAs he trying to talk you out of having a mx?

Carrie37

My female BS has never mentioned any celebrity in our discussions about BMX. She did say Angelina's name when we discussed genetic testing. My MO, also female, has never said anything about my surgery. Except to acknowledge I will be having surgery. Also, my BS is very careful to not give me an estimated reoccurrence rate.

Trvler

I know my first BS thought I was crazy to consider mx but that was when HIS hospital completely missed half my cancer in their dx. I only learned about it when I went to another BS to get a second opinion at another hospital. I was scratching my head wondering why bother re-imaging but she said her philosophy was one and done with regard to a surgery whereas the first guy obviously though go in with the least invasive first and if you have to go back in, no big deal.

Scarlett152

I raised the option of bilateral with both my BS and PS. Both said that there was no evidence that removing the non-diagnosed breast would be a benefit - honestly don't remember if they were talking in terms of a new cancer in that breast or disease free survival. However, both said if I wanted to do it for my own piece of mind, we could talk about it. Since I did a DIEP flap and did not have enough stomach tissue to fill out one foob (fat grafting from thighs in December to even them out), my only other option was 2 implants if I did BMX. I stuck with unilateral MX, but now am worried about the other one! Can't win!

How soon after chemo have you all had a mammograms/MRI? I was diagnosed in December. Finished chemo last week.

molly1976

I will finish rads this week and will have a mammogram at the end of September (which will be 7 months from surgery). They had originally said I would have one 6 months after but my MO though I might still be sore from rads in August.

rleepac

The MO wasn't trying to talk me out of it. He was just reviewing my case and when we got to the surgical part he mentioned it. Honestly I think it's because he just gave a talk at some conference and that was the title of the talk. So 1) it is on his mind, 2) he's proud of his talk, 3) he just wants to make sure I am making an informed decision.

I really do like the guy but it just rubbed me the wrong way when he mentioned the 'Angelina Jolie Effect' for the 3rd time in the past 5 months.

I'm fragile damnit....

Bekah

Trvler

I get it, Bekah. Hugs.

ninjamary

I asked both my BS and MO about BMX. Both advised against it (in my case) If I had come back positive on BRAC I probably would have a BMX (and not because of Angelina Jolie). I think it's a personal decision that is up to the patient.

Jackbirdie

if anyone is interested there is another discussion going on here:

https://community.breastcancer.org/forum/91/topic/...

that started in response to a WS journal article over the weekend on the "epidemic" of bmx surgeries. The Angelina effect is discussed but there is other lively commentary

eheinrich

I'm sooo frustrated! I have a strong lead on a good full time job in biotech. I'm talking with the HR person tomorrow. That's not the frustrating part - that's yay happy fun. I met with a PS in my HMO who I really like. I've been waiting for the surgery scheduler to call w a day so I can give these folks an idea of a starting date should they decide to hire me. She called today. I'm looking at the first available appointment in LATE OCTOBER!!!!!!!!!!! Kaiser only has 2 in the greater LA area so they get booked up. UGH. I can't start a job & then say btw I need a few weeks off in the fall. I'm trying to get the coordinator from my surgeon to find out if any of the docs in the outlying locations have surgical schedules that are less crazy - but then what if I don't like them?

Blech

Jackbirdie

https://vimeo.com/132790897E- congrats on the job thing. Getting out there and looking and finding something good!

Ugh onthe surgery schedules. I think all you can do is what you are doing.... Find out what the alternatives are. Is there any limit on how long you can delay before reconstruction? Like could you wait until you had some vacation time? I know that might not be ideal.... Just a thought.

When all else fails:

https://player.vimeo.com/video/132790897

rleepac

Is that with the company called BioTech or in the bio tech field? I buy stuff from BioTech company all the time. If you're willing to travel to a other Kaiser facility you might have better luck?

Trvler

Eileen, what surgery are you doing?

SpecialK

eheinrich - in the short term, if you can do a surgery on little notice, you might ask about whether they maintain a cancellation list. Plastic surgery procedures are cancelled or postponed all the time and you might be able to slide into someone's spot.

Italychick

What are people going to be doing regarding scans and monitoring on an ongoing basis? I just got a call from the Nurse Practitioner at my MO's office. She said they do scans every three months, and they are in the process of getting a follow-up PET Scan approved for me since I am finished with chemo - ugh. I had a PET scan, bone scan, MRI, ultrasound (3), diagnostic mammogram, and extensive bloodwork done before chemo. My MO is a firm believer in scans to catch things quickly.

I didn't think to ask her what "scans every three months means", but I am pretty sure I am not doing a PET scan every three months. I am thinking about trying to alternate PET scan, mammogram, ultrasound, and MRI if that can get approved by insurance. Has anybody had their MO discuss the ongoing monitoring process yet? And if so, what will you be doing? Any input on what would be a good protocol to use for ongoing monitoring?

eheinrich

I'm doing recon on my missing boob. TE placement. I'm currently on the cancellation list and am trying to get info from the other Kaiser locations. One about 35 mi from me has multiple PSs. I left a message with my surgical coordinator to see if she can get me info on the folks out there, who might have availability, etc.

Bekah, the company is Kite Pharma. They do cutting edge cancer research engineering a patient's own immune cells to attack cancer. They have a bunch of clinical trials going on. That's the project I would be working on if I get the job.

Jackbirdie

Eileen- you would be the perfect person for that job! What a great fit. Keeping my fingers crossed for you, Dr Heinrich