Lumpectomy Lounge....let's talk!
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RedReading, I had an oncotype test and my oncologist determined from that, that chemo would be of little benefit. I am highly er/pr+ with no growth receptors. I am 57, so menopausal. So I went off to radiation. Four months later he said that mammoprint would so their test for free for anyone who had already done the oncotype test. Because they have no intermediate category you are either below 10 or 29+. I came out on the 29+ side. I did lots of research and found that the two tests actually don't do the same thing. Johns Hopkins only uses oncotype as, according to them oncotype is the only test that determines the usefulness of chemo, and it is the only test that is endorsed by major cancer organizations.
So after lots of thought, and the fact that I was long past the "chemo window," I opted to follow his first recommendation based on his knowledge of. Y pathology and the oncotyoe test. You might want to ask for an oncotype test as well. It's at least worth looking into the differences between the two tests. Best of luck. Kris
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Thanks for the input. It does seem that using my sick leave for surgery and then returning to work might be best, then I can at least build up more sick hours till I find out whether it's straight to radiation or a chemo pit stop on the way
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Hi Kiwi-
I am in CA- this is what I did for what its worth. I used extended sick leave (ESL) (allowed day 1 when having surgery) as I was only out for 2 weeks and had plenty of ESL did not apply for disability from the state.
I started Radiation after being back at work about 2 weeks- it would have been sooner but I had some important stuff at work and the Rads center did not have an early appt. I worked through RADS- some are not okay doing this so if you are one of those people don't stress on it, just accept that everyone reacts to treatment differently.
I did not have to have chemo but I see some here who work during chemo and some who do not its all how your body responds and the type of work you do, scheduling etc.
That thinking I did not need to bother with CA state disability was a mistake on my part because my employer automatically integrates pay (read >>reduces) by the amount of state disability you are eligible for. Now I have applied for CA temporary disability to get those dollars but have not heard if it was "approved" yet. By the time I figured this out I was already well back to work. If I am denied I plan to go back to the employer and say I want the rest of my extended sick leave to cover that loss of pay.
Putting on my manager hat- Regardless of any state disability or what your employer offers for time off- If you apply for FMLA- consider doing intermittant- that way you can take protected time when you need it and only when you need it instead of a big long consecutive bank of time exhausting everything for the current eligibility period. You get the same amt of weeks but can break it up. This works great for any follow-up appointments other diagnostics or things down the road where you need time off and can access your protected time.
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We all have different responses to lumpectomies, and all lumpectomies are not the same. In my case, I had had neoadjuvant chemo first, so when the surgeon went in, he only found a 3mm crumb left over from one of the lumps to remove rather than the two approx. 2.5cm lumps they had originally been. So internally, there wasn't as much trauma and nerve damage inside my breast; he just checked the margins and glued me shut. The SNB was clear so no further nodes were removed, leaving my armpit incision to heal, also without any further internal trauma. It seems that this may make a difference in pain levels and perhaps healing time. As it was, I removed off the bandages the morning after (leaving the steri-strips), took a shower, and then headed to the supermarket. The only pain I had was when I reached up to a high shelf and it pulled on the SNB incision, just kind of a 'warning' pain to stop doing what I was doing.
My best wishes to all the lumpies here that they have an easy surgery and fast healing.
kiwilady, I had to wait almost 8 weeks before rads could even begin.
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Thanks for the feedback everyone, it really does seem like a lot of this will be based on how things go for me at the time. As someone who likes to have everything planned to a fine detail I find this a little scary! I have exactly 8 days worth of sick leave collected so I'm trying to find the best solution to use that mixed with unpaid leave and possibly short term disability.
wyo - I don't know if you can answer this but thought I'd give it a shot! With the intermittent FMLA am I able to claim California SDI? While I know there will be some hit to my finances through all this I'm hoping to minimize that if possible.
Overall though I'm just anxious to get to surgery and get started on this!
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I think the disability is a separate benefit from fmla. The fmla just guarantees you 12 weeks a year of time off , whether paid or unpaid or on disability, that your job is required to keep you on in your role or a similar role. Once you run out of paid leave and go on disability you are still counting towards the 12 week total. I guess I should say I know I could have started sdi from work, getting approved from the state is trickier. Also I found out if I had started state or social security disability my work disability would drop by that amount. Fortunately I didnt need it, as I had enough time banked. My job takes / uses all our accrued sick, vacation, comp time, etc, before Id have to go unpaid
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I took FMLA but only used 7wks, I also got SDI, along with using my sick time. SDI pays out only 60% my company use 40% of my sick time each pay. So it worked out for me a little. I'll be back to work this coming Monday but still owed money from SDI maybe one more week I think. I never had to use my vacation time.. they gave me an option I said know, Because I do go away like 4 times a year and want to make sure I got my time.
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Wyo! I think if you're paying each pay period for short and long term disability use it! Some ppl pay into this and NEVER use it and the government keeps all your funds. In the future apply regardless what your company will pay. But usually company only pay 40% of your pay because they know disability will cover the 60%. And they don't push you to apply for disability it's on you to take it or not.
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For those of you on Facebook:
I have created a facebook page - IDCFacebookFriends. I have found that these boards are great for information and support, but it seems hard to REALLY get to know the others here. I think becoming facebook friends in this way will allow us to more easily share happenings in our lives (not necessarily breast cancer related) and get to know each other on a deeper level. I would so love to know more of you on a (real) and personal level Do you have kids? grandkids? hobbies? etc. Let's share them on this new facebook page (and pictures too!) I have found that many of my friends and family see the end of active treatment as the end of cancer. (True in many respects, but as we who have been through it knows, it stays with us in some way for the rest of our lives).
Log in to your facebook and look it up. It is brand new so there won't be many at first, but let's see how it goes.
IDCFacebookFriends
A place where those affected by the breast cancer diagnosis can be a part of a community who understands. A place where friends are made. A community of people who "get it," who can offer support, encouragement and help to each other. Spread the word!
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If it is hard to find, enter the email in the search bar
IDCFacebookFriends@gmail.com
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hi all
we probably need a thread on how to make sure you can maximize paid time to cover breast cancer treatment haha.
As someone said above FMLA is protected leave (no dollars) but employment is secure and you have 12 weeks that can be taken in the 12 months that starts with the first day you used FMLA time. If you only have 8 days of vacation- some employers don't make you exhaust every single thing you have but some do. Will they let you do partial days so if you have 40 saved up and only take 4hrs/day it will last you a bit longer. Its all a game but you can play it.
Agree totally with SLoyd on putting in for state disability- I do pay into it so now I want to be reimbursed since my employer "assumes" you will have it and as you stated reduce your pay accordingly. We also have extended sick leave we accrue and can't use unless something like this happens so since I only missed 10 days of work thought I would use 80hrs of ESL since I had that in my bank untouchabe- oh contraire. It seems to take some time as I filed in October and have heard zip since filing so do it early.
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Hi Johnetta,
Happy New Year & great idea
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Thanks, you too! Looks like our dx stats are very similar, as well as from neighboring states. Wonder what else we may have in common? :-)
I am hoping the fb page takes off.
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THANK YOU, YOU WONDERFUL WOMEN!!! I feel better now, LOL....I wish I could hug you all in person.0 -
Tarot
Big {{{HUG}}} Back at ya!!!!
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having trouble finding the page...
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I cant get it either, Johnetta. Wonder why not?
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Just found you gals! I usually post on the Sept/Oct chemo forum.
I had a lumpectomy (along with 14 lymph nodes removed, 2 cancerous) in August. BS wanted to go in for a re incision 2 weeks later (didn't like margins cells too close to skin) but the MO & tumor board said chemo ASAP.
So 2 months of A&C, 3 months of Taxol/Herceptin. Then we discuss mastectomy & radiation, while then continuing Herception (HER2+) for a year.
Are there many of you who were advised to have a lumpectomy, and then months later ended up with a mastectomy? I can't help but wonder how things would have gone if I had been advised to have a mastectomy back in Aug, get it taken care of then, but BS kept saying "we don't do that".
Thanks!
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Good evening! I had a lumpectomy and SNB on 12/17. Ever since surgery, I have a weird burning pain from my armpit to my elbow. It seems like it goes in a line. There is no swelling and mostly hurts when my arm is fully extended. I do have full range of motion, but I feel a little tugging. No palapable cord. the BS evaluated it and thinks its possibly from surgical positiong Has anyone else experienced this and if so, do you have any suggestions for exercises to relieve the discomfort? Thanks. Oh BTW , they found a previously undiagnosed DCIS after my lumpectomy and that margin wasn't clear, so now I'm having a re excision on Tuesday. It is literally impossible to plan a thing with this crap. It's the most frustrating thing for me. Thanks for any info you can share.
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Lisa, nope sorry, I've got nothing but good wishes that this all works out. I had a series of deep bruises on the inside of my arm from shoulder to elbow which was also explained as positioning. Apparently they tied me down, which resulted in the bruising.
I had the same as u on 28/11 so I'm a few weeks ahead of you in healing. I still feel the pull you described but it is getting better day by day. Hope it does for you too.
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Hi Lisacm I asked about that same feeling.. mines is when i extend my arm, someone told me nerves, it's not as bad as it was about a week ago but it's still there a little.
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Lisacm, when they do the surgery, especially the SN work, nerves get cut/disrupted. They fortunately heal, but during the healing they send signals that we interpret as burning, so, it's a good thing, just your body repairing itself! And it goes away.
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Kiwilady - does your HR person explain this to you? I'm in CA and mine explained the basics. The first 7 days of your leave (including weekends) are unpaid but you can use your vacation time (or whatever you have at work) during that period to ensure you get paid. The disability benefits begin on the 8th day and I think it pays up to 60% of the max amount of your salary. File everything online as it is quicker but it's frustrating because if you call you NEVER get a live person. Luckily your doc can submit their paperwork online as well. I constantly checked the website for updates. I filed my paperwork the day after the surgery and I think I got paid the following week. If you need to extend your leave there is a form you can fill out online as well. Mine extended by three days and I ended up taking 12 days off work (2 were the Thanksgiving holiday). you get a debit card in the mail and they put any money into that account and you treat it just like a debit card. Good luck!
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I am a month and a half post surgery and am experiencing tightness and tenderness down the side of my torso from where the surgery was. I'm guessing it is due to the scar tissue which must be causing the muscles, tissues, etc. to be stretched. Anyone else have the same issue?
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Aeryno - thanks for the explanation. My HR person did send me all the forms, and her advice was to just take unpaid leave from the start as I have so few sick days left that I might need them when I am back and no longer on medical leave. The good news from her is that our contract states that I can take a year off for illness and my job will be secure. I didn't know about the card, that's really interesting way to do it! HR gave me a print form to mail in for disability so I think I will check out online and file it that way.
Also, spoke to the surgeon today, I'm definitely getting a lumpectomy, his recommendation was just to stay off from surgery date right through radiation/chemo. I am thinking of doing this as my work requires me to be on my feet and I average about 8 miles a day walking around the building as well as a lot of bending up and down etc. Plus I deal with the public a lot, with lots of sick people and children coming to visit.
I have an appointment with radiation therapist tomorrow and after that the surgeon will set the date, he says likely about 10 days from now.
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kiwilady - that sounds like a good plan! I basically sit all day so I worked a modified schedule during chemo. During the 2 months of dose dense EC I worked from home the week of chemo and then in the office for a shortened day (and from home the rest of the day) the week after. I found I felt really good that second week! During the 12 weekly Taxol I worked from home the day of chemo (my treatment was after lunch for about 2 hours) and then in the office the rest of the week. Luckily they were very supportive and flexible. I think taking time off for you sounds like a good plan to avoid infection and simply rest.
Yes the ATM card was great and I recommend trying to do it online if you can as it's much quicker. Here's the link: http://www.edd.ca.gov/Disability/
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Tarot - Ooo who, you did it! Hope you are home resting with your arm elevated...pocket parties can get crowded and loud...Sending gentle healing (((hugs)))
Fingers&toes crossed for good communication and timely results.
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Well, here goes. Good news and bad. I liked my MO, her name is name is Nadia. She spoke in layman's terms without being condescending. She's nice.
Bad news - first question out of her mouth was, why had I chosen to have only 1 of the 4 tumors removed. I said, what 4 tumors? I am now the subject of a medical investigation. Apparently, the radiologist identified 4 cancer suspicious lumps and recommended biopsies on each, but they only did one, so that's what my BS operated on. Sigh.
OK enough of that. But Cindy, I need a hug.
Tarot good going girl. Now just take good care of yourself. (((hugs)))0 -
(((RedReading))) - oh my, good news bad news crazy stupid news!
How did you keep your cool! 1 out if 4! Ugh...investigation, but what is the plan...
Sorry that your BC team did not informed you of the true status of your breast prior to lx:( there's no excuse. What is the plan now? You haven't started rads...will they do a post lx MRI to see if still flagged or MRI biopsy...are they in the same quadrant? Ugh ugh
My preLX MRI showed 3 areas, 2 in the same quad, lx went for the 2, post lx MRI did not flag the 3rd area and RO&board decided not to do biopsy, but in June will have another MRI to see if 3rd area is still there or flagged. It's hard, I was willing to do biopsy and mx, but team sad no. Ugh, our choices...we try and do our best based on our teams input.
Sending calm confident thoughts&prayers that you know together true status if your breast and are able to move forward with confidence. Tonight, ice cream...ben&jerrys chunkie monkey !
(((Hugs)))
Cindy
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hi all
glad to see everyone who is checking in. I am fighting a winter cold and just sick and tired of being sick and tired haha.
Red- this is really a very weird circumstance- I am glad you got this new doc who is just putting it out there for you but honestly why would she think anyone would say well just pick one and remove that.....
did you get a copy of your path report? seems like it might be a good thing to have while all the investigators are scrambling around trying to figure out the system breakdown. I hope you feel you are in good hands now with your new person and if she is asking questions thats a good thing- keep us posted
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