After Radiation
Comments
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Sherry - If your RO things you had a mild case I would hate to hear his definition of a bad case. Sheesh! I would definitely ask for a correction - that sounds like he is falisfying records to cover his own ass. Some will do that you know. I thought I had a rough time but nothing compared to you. Sure glad we are done with that.
I did post this on another thread so some many be reading this again - sorry. I have had burning/stabbing breast pain for 5 1/2 months. I recently posted here that this is a result of radiation - of all things. I finally got off my butt and called my breast surgeon today. Have an appt for this Friday @ 5:30. So much for being appt free this month. Oh well, I did make it 2 months without having to sit in cold waiting rooms. I'm sure he will refer me to a pain management doctor and that is okay. I am so sick of the pain. The last two days have been the worst. Feels like I am really sore - like I am bruised from the inside out. Enough is enough. Will post on this after my appt.
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Hi there. I hope you are all enjoying a good day. Our weather is fabulous and I spent most of this day outdoors, working in my flower garden, wiping things down and sitting in the shade. Awwwhhh, this is the life! Actually, I am glad to be busy (can't think). Tomorrow is my 1st mammogram since my surgery last June. I know by tomorrow I will work myself up into quite a state. I think there is a bit of a wait for results, too, so please bear with me as I will become a basket case until I know more.
take good care and just breathe. . .
Teklya
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Hey Jo....Been reading about your pain, & I'm so glad you are going to see the Surgeon! Maybe they will just give you something to help, so you can at least BREATHE again! It's so frustrating when we go for help, & we just get worse! If we could just find, and trust a Doc, and put out lives in their hands with confidence.....Yes, let us know! No more pillow fights for you missy...! Just warm (((((hugs)))))! xoxoxoxoxo
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Chevyboy - Love the picture - made me smile.
I have complete confidence in my breast surgeon. I need to get over the fact that I think that by going back to him for this I am being a whimpy baby and that I am taking an appt time someone else needs more than me. That is just the way I am. BUT, enough is enough - it has been 5 1/2 months already.
No more pillow fights
Can I at least bring the food and drinks? 0 -
No sweetie....I'll cook you dinner! xoxoxoxo
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Chevyboy - What would I do without you? That looks so yummy! At least let me make dessert.
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GRANNY - WHERE THE HECK ARE YOU? I am so worried about you. Are you alright?
If anyone hears from granny please let us know - she is MIA!
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im here----went to onco yersteday---everything is just fine....mild edema..then puter got its period sooo i did not go on line ...just 5 min and then down.well its just as well as i went to sleep early...today i spent the entire day on line still lookin for a bra.ha.the one the PT wanted me to get was $224.50 AND no bras are covered for me by either medicare or my 2nd coverage.they only cover for mastectomy....so i found something on line.im hoping it works.ill get it mon or tues.i did not have time to read anything so im prayin for all of you...tonite im off again.goin do some gambling with the men...
ill try to catch up tomorrow.didnt check emails for 3 days.
hope everyone is doin ok....ill go back and read tomorrow...thanks for all the concern.JO JO bad news travels fast. ha.Dr.told me STOP WORRYING...ill be back...hugggggs Kantalope
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Well, I'm back. Mammogram went well, the technician was awesome and very gentle. Lots of pain, though, made me cry, though it would not have taken much to do that today. No results though, they will read it today and notify Dr with results tomorrow, if not, after the long weekend (Victoria Day on Monday for us in Canada).
Thanks for your prayers and support. It helped more than you will EVER know.
Teklya
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Granny - I told you to stop worrying - and now the doctor says the same thing. So would you stop already. Glad the onc appt went well - sounds like the edema is going away.
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Tekly-glad the tech was gentle, but sorry you were in pain. Hope it gets better
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Hello Teklya... just saw your post and I hope all goes well ..I.will say a prayer for you...and ladies just saw my BS and she told me it was mandatory I seek a pt for lymohedema as I had so many nodes taken out...I was in danger of getting it in my lifetime...as my husband and I are swamped with medical bills...I dont think I can add this until there is a problem... Yes GD this is the gift that keeps giving... thanks to all of you ladies and help and GREAT info... I somewhat keep SANE!!!!HUGS EVERYONE!!!
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Hi Ladies... hope you don't mind my joining in... Have not had rads but it is/was in my original plan... I had lumpectomy in December then chemo (finished last week)
Now I need to decide to EITHER have rads OR mastectomy. I do not need both...fr a while now, I thought I would do the MX and recon for many reasons (fear of recurrance, fear of rads (left-sided cancer), history of ADH, pappilloma in cancer breast etc.)
Last week I met with the RO for the first time at the urging of my MO and BS just to have all the facts... He CONFUSED me terribly. He said:
a) I should have had more nodes removed for him to know how to treat and yet my MO and BS both said it wasn't necessary for me (had one .38mm micromet)
b) same RECURRANCE rate with Mx and rads (I had NEVER heard same recurrance rate before... same survival yes, but not recurrance)
c) that chemo doesn't help locally at all... that chemo doesn't get into scar tissue (but I have only had lumpectomy so far)
So... my concern is that the MX won't help me regionally (like in the clavicle, nodes and chest wall) and I could possibly be at greater risk of recurrance getting a MX... I hadn't been thinking that but his comments made me think that... remember I had 6 rounds of TC chemo so I thought the chemo would take care of those areas, no??
RO makes rads sound so uneventful... If you were in my position, would you opt for rads or MX/Recon (I would go to NOLA for DIEP/hip flaps - big surgery)0 -
After my radiation treatments were over & I was burnt to a crisped my, RO said, "Go be happy." I just wanted to smack her! I am still dealing with burn she created with the scar boost 2 1/2 years later. I don't even want to think about how much this burn has cost me. Waaaaay too much!! Just venting...... NJ
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so NJ... I guess you would recommend MX instead of rads, huh?
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Mrsnjband: So sorry to hear about your horrible burns with rads and the flippant send-off from your RO. I hope you're doing better these days.
Bdavis: If you're comfortable that the recurrence rate is the same for MX and rads, I personally would try the radiation first. MX/reconstruction is the right way to go for some but it is major surgery. My experience with rads was fairly good--just takes a while since you go every day for appx. 7 weeks. I did not experience pain and only got a small spot of a burn during the last few days. My skin held up very well and I was diligent about skincare and not putting pressure on the breast (just cotton camisoles under clothing) and used Basis soap, aloe gel, calendula cream , Tom's deodorant and corn starch--also heard great things about emu oil and Miaderm cream.
The worst part of radiation for me has been the fatigue at the end (lfinished March 9th) and afterwards. My white blood count dropped a bit and I just found out today that sometimes rads hits the bone which can affect the bone marrow and that may be the reason for my continued fatigue (also started working part-time recently and it's been fairly stressful).
I know that the left side poses some risk to the heart but I think that if you go to a place that has a great staff and check with your RO on the dosage and location of the rads, you may get through it fairly easily and safely. I would also get a second or third (or fourth!) opinion on the recurrence rate and make sure that YOU are comfortable with the option you choose.
Then I would also adopt as many of the things from the books AntiCancer A New Way of Life by David Servan-Schreiber, MD (suggest walking 30 minutes a day/6 days a week to reduce risk of recurrence by 50-60%) and also take a look at Life Over Cancer by Keith Block, MD.
Good luck with your decision and a big hello to Grannydukes and all the others on this thread. Although I don't post too much, it's part of my favorite topics and enjoy it.
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bdavis-we have talked so much. One thing to point out is that rads does not do anything for ADH or calcifications. If you still have any in your breast they will still be there after radiation. I did not know this and no one addressed it with me. Seems everyone was just concerned about the cancer. After rads was over I asked my MO about it, and he confirmed this. Because of that, dense breast and tumor not being able to be seen on Mammo I have to have yearly mammo's and yearly MRI's alternating every six months for life. With MX you do not have to have those things unless they suspect something. Do talk to your RO and MO about these things as well. As I did not know anything about the intense follow up until after rads was over. So even with my insurance I will be out of pocket 2K a year for my MRI. Just be sure to have all your info so you can make a decision that is best for you. You are lucky that you are in a position to decide now. And as BrilandGirl said if you have rads now you can always have MX later. If you want to PM me you are always welcome.
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bdavis, sorry to hear the RO was so confusing and not helpful. Wonder if it makes sense to get a second opinion or find someone you jive with better. I chose a lumpectomy and rads cuz I also heard it has the same recurrence rate as Mx. (my tumor was 0.5 cm and grade 1). I sometimes wonder if I should have had a Mx, but my husband reassures me I made a good choice. (I avoided other steps and issues). I don't want to add to anyone's fears, but doesn't it seem like Mx would have to reduce the risk of recurrence? I mean, how could I get a recurrence in breast tissue that's no longer there? I thought BrilandGirl's comment about the bones and bone marrow was interesting. FWIW, I was concerned about rads and bones (I have an unrelated bone issue) and my RO was able to avoid the bones as much as possible (completely avoided the sternum) The specific treatment area varies with each patient's anatomy but it's nice to have an RO who listens and tries to accommodate these concerns.
Just finished rads this week (hurrah). For me, I had fatigue, esp. in the second half of tx. I had skin redness to the point where I sometimes found it hard to sleep--couldn't find a comfortable position for my arm except on my back. (then a friend came over and showed me ideas on "sleep posture". sounds crazy but it helped). My RO gave me a 3 day break between full-breast rads and "boost". Made a huge diff. in my skin, energy level and attitude. thanks RO. Then I learned I should have had completely clean skin before rads (no lotions or creams in the skin at all, as if I just stepped out of the shower), it made a huge difference (how did I miss that before? geez)
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Thank you all... I have been trying to get a second opinion at the Cancer Institute of NJ... a lot of steps to go thru unfortunately...
And my RO is the only doctor of 4 who said recurrance is the same... all say the survival is the same, but lump/rads has a higher rate of recurrance plus risk of new cancer than a MX, for obvious reasons, so it bothers me that the RO would say they are the same... it makes me questions everything he said.
I have scheduled a simulation AND asked the reconstructive center to go forward with pre-certification, all buying me a few more days to decide... Too bad there is a window of opportunity and then I wouldn't be a candidate anymore.. seems so final.
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Each of us has to make her own decision and I send you hugs as you try to do what is best. My Surgeon, Oncologist and RO all shared the same opinion about this. They said the chance for recurrence AND survival both, was exactly the same in lumpectomy/rads and or MX. MX is not a guarantee against a recurrence. A local lady, albeit older then you I think, had a MX only, no Rads, and got a recurrence in the area under the scar tissue. She had to have more surgery and then go on in to Rads. I've lost track of her so don't know how she is doing. It's hard to know what is best. I feel comfortable with my decision of lumpectomy and rads but I also had chemo first. I had everything possible to fight this beast and I'd do it again, although not happily! If anything, we women need more clarity in all this because there are so many differing opinions.
I edited this because I also wanted to add that if you can find an RO who uses a newer procedure that involves a mapping of your breathing that involves gating (the machine shuts off on the inhale or exhale breath, I can't remember which, so your exposure to the actual radiation is only half that with traditional Rads). My clinic charged $680 a day (and I had 33 treatments) for this gating procedure and my insurance refused to pay for it so my Dr.'s office wrote it off. He strongly believes this procedure is for the good of the patient so he does it regardless. His insurance secretary said the Medicare just now approved this gating procedure and it takes insurance companies a while to catch up but they will eventually start approving it too. I love my RO clinic.
Juanita
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Did the woman with the recurrance have chemo or just a MX? My concern is that rads may be better to fight a REGIONAL recurrance where MX may be better to fight the LOCAL recurrance... And NONE of my docs say I need both, so which is better?
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I believe she had chemo but no rads. But, she also had positive nodes, if I remember, something like 6 out of 21 maybe? It's so different with everyone and there are often times not many answers. She went to different Dr's in different cities then I did and he believed that with a MX, even with the positive nodes that the chemo would take care of it and didn't order Rads. I don't think she ever had a breast MRI either. I had 2 of them before my surgery was ever done. During the second one they found 3 more areas in the breast that were fat necrosis and fibrocystic changes and my Radiation Dr.'s said they were not and would not ever become cancer. I edited and added some more to my last post about my radiation experience if you've not read it. I am Triple Negative so I had to have everything done. In my case even with an MX, if I had it done, I would have had to do Rads too. It's just part of it with TNBC, they throw everything at you that they medically can with it. I know you will make the right decision. (((HUGS)))
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bdavis - I personally chose the lumpectomy. My highly regarded BS recommeded it and said the MX is a much more complicated surgery. I had very little problems with the RADS - my breast tanned and is now fading. You can always go back and have the MX if you need it. Actually as the scar is on the left side of my left breast I can't even see it. My breasts look and feel the same as before (minus the scar of course.)
Good luck with your decision!
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I guess tumor location does make a difference... Mine is at 11:00, so upper inner quadrant... My BS tried to keep the scar inside my tan line but it is right there on the edge... I can actually show people my scar without exposing myself, so that's why I worry a bit about the skin damage.. It would for sure show with just about any shirt.
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bdavis,
I PM'd you with some info. I'm left sided bc and had the rads.
Lee
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bdavis, I may have gotten it wrong. Maybe they said the survival rate is the same, not the risk of recurrence. That makes more logical sense. You probably know this, but the simulation is the first step of radiation (they make a custom foam thing, etc) so you should probably decide before that appointment. Jwatrlilly, interesting info on gating. Wish I'd been offered that option.0
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Oh yes, I do know that simulation s step one... I have an appointment with my MO on Tuesday and simulation is Thursday, so I am hoping to leave my appt on Tuesday with an answer.
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oh great. Looks like you have everything lined up. I hate this "race" aspect of trying to get info and make decisions on what seems like short notice. Seems like you're asking all the right questions. Best of luck w/ your appointments next week!
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hello everyone.what an active thread this has been.gonna try to catch up a little bit as im waiting for my granddaughter to bring myGGranddaughter for her first visit.
Telka-damn did anything escape you???hope you are feeling better from the mamo.my dr said its gonna hurt.hope you are betta today.xoxoxo
JO JO---the edema is under control.waiting for the new bra.mon or tues.glad you are finally gonna go to the dr...you too have a hard head.ha.
Cat-you need PT.go to the i hate lymph.thread.they will give you exercises you can do now...i didnt pay one penny out of pocket for PT.i dont understand.
Bdavis-welcome.i know you.all i can say is NOTHING concerning BC is uneventful.
MrsNJ-rads are supposed to be a walk in the park...yeah right.thats what everyone makes you think.wake up its not.
Brilliantgirl-welcome too--gald to have you....we need your info here.
Sherry-did you say pet scan is out of pocket?????
Peggy---welcome--yay for finishing those damn rads.
Valgirl-welcome too-wonderful sistas joining.thanks for posting positive info.we dont see that too often.
Bdavis---i to had 3 lumpectomys on left side.RO took great care to protect all areas but the breast.
and the beat goes on
CHEVY AND TORI---MIA AGAIN...WHERE ARE YOU GIRLS?????????
prayin for everyone as usual.hugggggggggs K
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granny - Glad to see you back here. I sent you an email.0
