CALLING ALL STAGE I SISTERS
Comments
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Mulligan, I don't think you're vain. No one wants to "age" overnight. I certainly don't like the loss of collagen and the lose, wrinkly skin on my arms or the wrinkles that have deepened on my face BUT as I said before, I AM thankful that I woke up again this morning. If staying around means giving me more time to watch my only grandchild grow-up then I will continue to take the Tamo. It's a small price to pay. Hang in there girl.....by the time you get to the 5 yr. line maybe they will have changed it to something else.
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Morning all I had my re-excision yesterday afternoon and had a rough time. I had a bad seizure afterwards in recovery and then got sick. They also had a very hard time getting my IV. I am a hard stick anyway and now its really hard since I only have one arm to use. Got stuck twice for IV and then 4 times for blood. They finally had to go in my thumb to get it. My nurse said I may want to get a port since I am so hard to get blood on. I told her that I didnt have to have chemo and she said ya but with your radiation you will still need it because they will check blood levels a lot. Has anyone else heard of that?
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ncollett, I never had my blood checked during rads. Had my first blood draw at PCP's office 2 weeks ago......2 months post rads. I guess it depends on the doc. Sounds like you had a rough time yesterday. Take care!
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Ncollett, so sorry to hear you had such a rough time. Sending healing thoughts your way that your recovery will be easier. I will have rads after my chemo, but haven't heard about the blood draws yet. Hugs to you.
Sandy
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ncollett, I had rads and had blood draws a few times, but I wouldn't consider it a LOT! I think 2 or 3 times total. I guess you could ask your RO. I don't think it's worth going thru surgery to get a port placement and then another one to get the port removed....unless it's absolutely necessary. If I remember correctly, they did one draw at the beginning, middle and towards the end. But, I've slept since then and have chemo brain!:). Good luck. Sorry you had such a rough time. If you had to have surgery, for the port, they would have to stick you again for the anesthesia, so that isn't really a solution, I wouldn't think....?
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For what it's worth, I had rads and never had blood drawn. I would definitely ask the RO about it - practices may differ, but it isn't guaranteed that you'll need to have frequent draws.
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Nancy. I am so sorry you had such a rough time. The port sounds like nonsense to me. My mom had a port years ago for monthly blood transfusions but when she needed to be stuck there were certain nurses she would not allow to do it as they were quite simply no good at it and others she had no problems with. Some are definitely better than others. I have had no blood drawn since before rads and I finished a month ago. I so hope things improve for you from here on out!!!
On the premature aging. I will see how it goes but if its too bad then I will consider stopping the pills. I think not only your general sense of well being but also how you feel about your appearance affects QOL and with no children or grandkids to care about its me, DH who is 6 years older, and the dog so I am not that worried about living until I am 80+ to be honest. I would rather have 10 good years than 20 just hanging in there, buts that's just me.
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I am with you all I dont think I need a port for blood draws. Thanks ladies.
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Bosum, I know what you mean. At the time of my dx neither my primary care or myself could feel anything. It showed up on ultrasound and I could just about feel something with the gel on when the tech found it. My primary just took me on my word that I had had some prior swelling and scheduled ultrasound. I had a history of cysts and she never lets a concern go without getting it checked out, a lovely lady. With ILC I will always have a concern about the other side as it can be really difficult to feel, even when big. I will be turning 65 at the 5 year mark so hope I can get some followup after that through medicare. Don't know what the latest theories will be by then...
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ncollet---I didn't do chemo, did 28 rads, no blood draws EVER for the radiationportion of my treatment. Once Rads were done and Medical Onc put me on the aromatase inhibitor, after my first 3 mnths of the drug, he started doing labs.
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I remember in health class they had us feel how breast cancer would feel like using some fake breast with small lumps that were hard and they also said it would feel like a pebble or marble too. They never mentioned that breast cancer doesn't have to be in a form of a lump. Only reason, I knew to be concerned was cause of my bloody nipple discharge. No lumps ever.
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BB, glad you had a good check up! Mine is next week.
I, too, thought I would find a lump if I ever got BC! What I found was NOT like a BB or marble at all. It was a thickening, even though it turned out to be IDC; BS thought it might be ILC because of how it felt. I didn't even find it myself...mammo did, thank God! . We need to make others aware of what we know about BC and how sneaky it can be!0 -
I was dx'd with ilc in july. Last year I was dx'd with lcis. I was adamant last year about having a bmx but all the doc's said it was unneccesary. I had a gut feeling and they wouldnt listen to me. I have read a lot (well, the very little that's available) about ilc. It is known as the "sneaky cancer" because it does NOT form a lump rather it forms in a single file pattern. Which is why it is not found during self exam or doc exam most times. It a lot of times isn't picked up on mammo either. Mine didn't even show up on US..it was found on mri. And the only reason I was having the mri's is because of the lcis dx last year. Unfortunately there is not a lot of info out there about ilc because it only represents 10% of breast cancer cases. These doc's really need to do ALOT more research and studies on ilc/lcis because it seems to me that they mistreat it, atleast that's how I feel about my cancer. Even tho I had a bmx, I still worry ALOT about it coming back or mets. Ilc is also known to mestastisize within 3 years by means of the uteris and gi tract. Is it just me, or does anyone else worry ALOT ? I mean, on my mri guided biopsy in June, they said my cancer was 5 cm. But after bmx they said it was only .15cm's. That's a big difference !! Sometimes I get angry about all this because if they got it right when they did the bx I could've avoided the bmx and just had lumpectomy. Yes, I know I said I wanted a bmx last year but when it came down to it this year, I was horrified at the thought of a bmx, now it wasn't my choice anymore. Im having a really hard time with not having my 34d's that Ive had since I was 15 years old ! Everytime I take a shower I cry when I look down. I have TE's but it's seeing the scars, the disfigurement that comes along with the TE's. Not to mentio the pain and constant discomfort. It's kind of hard to see the light at the end of this tunnel because its so far away. Sorry if I am mumbling here..just had an exhausting weekend emotionally. Thanks for listening ladies
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I didnt feel a lump with my cancer either and was really shocked when they told me I had a Grade 2 IDC. I found mine on my yearly mammogram. I am getting after my sister in law because she hasn't had one in years and I keep telling her what if I had not gone and had mine done. Can you imagine if I had waited and kept putting it off and putting it off. I faithfully get a mammogram every year and it blows my mind how quickly cancer can come up.
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Hey girls,
I have a HUGE question. Let me recap what's going on. I was Dx in June (4mm stage 1 grade 1 zero nodes.) The plan was to have radiation. While I was waiting on healing my oncologist did A genetic test. The genetics councilor ask that I not start radiation until results came back because it could change treatment. Looking back i really wish I had not agreed on this 25 panel test.BUT I DID ,WAS TOLD I WOULD HAVE RESULTS IN 2 weeks. It's been 7 weeks and I still don't have results. Trying to get info has been like pulling teeth. I have waited all this time freting over this test. I get a call from radiologist they want to get started this week on radiation ???? Have waited this long on that damn test now they want to start treatment. The reason for waiting is to preserve the breast tissue if I need mx. This cancer is so small and slow growing it was a miracle that they even found it. My question is with this small of cancer Do I even need even radiation? The only history I have is twin sister had BC and my mother had pancreatic cancer. I'm so frustrated with everyone I could screen. I have read all about the chance of BC coming back but all the tumars are in cm not mm. I'm not sure what I want to do. Any feed back will help. Thanks girls your all great on the forum. Susu
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susuq, I am not a Dr, but size is only one factor in planning your treatment. Given that it is small, grade 1, it is slow growing. I would definitely see what's going on with the test and not stop until I get an answer. It does take 2-3 weeks, usually, but I have never heard of it taking 7 weeks. Have your tried calling the company themselves? Not sure what to tell you about radiation. You can always get a second opinion. I personally would wait until I got the results back before I made any big decision or started any treatment. If your genetics are positive, they may suggest BMX; if not, then maybe just rads or HT, idk. The waiting game is hard. Wishing you the best!
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Susug, my tumor was 2mm and yes they told me radiation or a mastectomy. They preferred radiation but for my piece of mind I went with a BLMX.
From all the second opinions I had, (and there were many) they agreed I should have radiation or a mastectomy. There is a gal on these boards whose tumor was 1mm (forgot her name) and I know she had radiation. I agree with keepthefaith about getting a second or third opinion.
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The reason they are pushing you to start the radiation is there is an optimal window following surgery to have it done where it will be effective. My genetic test only took about 2-3 weeks, so I would definitely follow up on that to see what is taking so long.
For what it's worth, my cancer was tiny (don't know the exact size as it was all removed by the stereotactic biopsy) and they still recommended radiation. Part of that may be that I am relatively young (45 at diagnosis). They usually don't recommend bypassing radiation following a lumpectomy for patients under 70.
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Hey Girls, I got my test results back they are negative yea!!!!! Now I need to make a decision rads or mx. The genetics councilor (female) didn't say she thought I need mx but I think that's what she was swaying for. My surgeon says no I should do radiation. This may sound vain but if I have rads and I get a lot of shrinkage can a plastic surgeon do surgery to fix that? And will insurance pay for somthing like that. Soooo many questions. Thank you all for you comments. Oh and I have heart problems. The cancer is on my left breast my RO says they can block the heart from getting radiation. ??
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susu, great to hear your news! What did your MO say? Mine was on the right, so can't help you with the heart question. Maybe you should consult a cardiologist...? I do believe insurance has to pay for any plastic surgery due to treatment. I had some "shrinkage" due to LX and rads, but not drastic. Righty was always smaller anyway; now there is a bigger difference. At this point, I am not game for another surgery, so leaving them. Although I wouldn't mind a LIFT!!! Hard decisions. My advice is to follow your gut:).
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Hey Girls,
Keepthefaith, thank you for your input. I think RO said they block the heart or go in at a different angle to protect it.??? I'm going in for my set up tomorrow not sure what it's all about yet. I'm sure I will know way more then I want soon Lol!! BosumBlues, you are right I need to go with my gut and it tells me go for radiation. I'm sorry if I sounded insensitive. Thank you for your comment. My twin had dx 12yrs.ago she didn't have a choice either. Well the way it looks is I will start in about a week or so I will be finished right before thanksgiving.
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Susug---they do a test during your simulation to see if you breath in a manner that allows the radiation to hit when your breast is furthest from the heart. Its called respiratory gating. Not everyone can do it. so insist they tell you before you do radiation. I did not breath the way that allowed them to do it and I didn't find out until about 3 weeks of treatment........
I doubt your breast will shrink any. I am still a D.... They may not cover making you bigger, But, most insurance will cover what HAS to be done. IE--if I had a mastectomy, the surgeon said I would have had to have reduction on the other breast.
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Suug - I suggest to ask your Breast Surgeon using who the Radiation Oncologist is that they work with at your hospital and make appointment to discuss your health history with him/her and the radiation treatments on your skin and considering your tumor location and diagnosis - that is what I did 5 days after my appt with BS.
I had rheynaud's syndrome and bad circulation , hands and feet and body turns blue/purple from cold or just any temp change I feel and Father had quad bypass surgery at 53 yr old and heart disease runs in my family along with Grandmother (Mom's side had mini strokes and also she had BC at age 80) - long story - radiation onc said with my fragile, fair skin, thin skin, rheynaud's health history with skin cancers (squamous cell carcinomas a lot on my chest and body) and having had a frozen rt shoulder in 2007/2008 and torn rotator cuff etc - he said Radiation not a good idea for someone like me even if I am young (42) - my chances of a better end result would be a Mastectomy and I was happy to hear that as that was what I already in my own mind had selected as I did NOT want 5 days week radiation and trips up to hospital and 6 weeks of that nor just a lumpectomy that would anyways need me to go to plastic surgeon and have it reconstructed so would match my existing left breast that was keeping that was all fine....
I have no regrets and more peace of mind knowing the Masetcomy removed the tissue that was very dense and full of suspicious calcifications and two small tumors (IDC)
just my opinion - every women I know who began with Lump & Radiation eventually required the Mastectomy - either 2 yrs after or 3 yrs after or 5 yrs after - as they each had recurrence with lumpectomy and radiation - I just wanted to not have to worry about that happening to me.... so yes it is a longer surgery and more healing but once I get my implant in (Nov 18th), I feel I will have had 6 months of pain and discomfort from MX surgery and recovery and the fills and reconstruction process - and by Jan 2015/Feb i should feel much better and on my way to a new year and all... I highly suggest gathering your family history - Heart disease, stroke, cancer and look over your own health history as Radiation does burn and ruin the skin that makes harder for reconstruction any time afterwards... the end result will never look as good as if you had Mastectomy and no radiation - that is justwhat I was told from two Plastic Surgeons,,,, see what your insurance covers too - many times a Mastectomy surgery and lymph node surgery to test sentinel lymph node winds up costing insurance company less vs you having a lumpectomy surgery (and possibly 2 of those is they don't obtain clear margins first time) and 6 weeks radiation - and about 3 weeks into Radiation i have heard the last 3 weeks people get very tired but that is just what heard,,,, you should def ask others who had it how they felt,,, good luck
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Hugs to all my sisters
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Sheila - Hugs right back atcha! I don't check in here as often as I used to, but doesn't mean I don't send my best wishes to all every single day.
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Sheila, Thanks for the hugs.....same tight squeezes to you!! Haven't been here in a while, but it's fun to catch up.....heading for my tattoos next week....all is going well.0 -
Hi my name is Doris, I had breast cancer 22 years ago, all went well until March 12,2014. I went in for the results for a benign tumor only to find out it was stage 1 cancer again. What a shock. I didn't do any treatment other than tomaxafin for 5 years. I thought since I had a bilateral mastomocy I would never have breast cancer again.
I started chemo in June and finished my 6treatments the first part of Oct. I am still on herseption until June 2015.
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Hi Doris.. What an awful shock.. After 22 years! I was diagnosed in August... Been lurking on these boards, finally plucked up the courage to join.. Have read a lot of this thread... It is wonderful... Helped me so much, especially of a night when I can't sleep.I notice it's slow here now..would be great if it takes off again.. Lucy.
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Welcome Lucy55 to BCO as an active member. We have many lurkers (readers not yet joined) as many people just need the information, but don't join for a range of reasons. That's fine, as we are still providing an educational resource for them, and that is one of BCOs primary focuses.
You will be able to obtain valuable feedback on your own concerns now you are a member of the community. You will find excellent responses to questions and sisters with similar problems and interests that you can chat with in the safety of this forum.
Nights can be a hard time as all you can do is think.... Glad we were of assistance. Weekends are generally slow with most members posting during the week, so don't despair, BCO is very much alive.
All the best, The Mods
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Hi Doris & Lucy - I was diagnosed "stage 1" (no nodes involved) back in April. It was tossed around by my breast surgeon and her nurse that I would "get off easy" with just a lumpectomy and radiation. At the time, I thought they were nuts for saying "get off easy".....then the path report came back, not enough margin around the tumor so they had to go back in and take more margin....then that path report came back HER2+++ and it was a whole new ballgame. Chemo, followed by 7 weeks of radiation and a full year of Herceptin only in the infusions, then 5-10 years of anti-hormone/cancer drug even though I've had a complete hysterectomy 6 years ago. Really surprised I have any hormones at all based on the hot flashes. You just don't know where this disease will lead you so don't bother worrying too much about what may or may not be down the line for you until your onco gives you the full story when the path reports come back. I have to add, I have learned more on this website than from any of my doctors/nurses/techs. I have 7 more "boost" rads to go. I think I can, I think I can, I think I can......
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