Lumpectomy Lounge....let's talk!
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Yes, Peggy, and thanks for your advice on Medicare, too. I got the AARP-sponsored plan with UnitedHealthcare, the F plan, and it's so, so much better than what my husband has, which is a Medicare Advantage plan I want him to switch as soon as he can! Yes, even though I haven't (luckily) had to use it much so far, the peace of mind is worth every penny. There has to be something good about turning 65, right?
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Kay, you are so right! I have the F plan and haven't had to pay a penny for medical since Chuck and I turned 65. We have separate prescription plans, of course. Chuck had had his Medigap plan in effect for 10 days when he had a massive heart attack. We paid nothing. Nothing for my BC. So worth it!
HUGS!
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kayfry....cancel! who needs more surgery!!!
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Nash, that was my thought too since I have a choice. Obviously, if I'd had a mastectomy I'd be considering all my options. But I didn't and my girls are still rather balanced even with the downward facing nipple (like Kay). Another consideration was that I live alone now that DH is in a nursing home. So would prefer not to have a surgery to cope with alone.
HUGS!
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Hi everyone. I'm not decided on lumpectomy for my DCIS yet, but I am reading the thread with interest. I also have the option of UMX no rads. I was told by three doctors that I am an excellent candidate for lumpectomy with rads. The rads part of the equation is what is making me think a UMX is a better option.
I really don't want the UMX but I don't want the radiation. I just posted my long story on the DCIS board and I will post here below this intro so you can read about me and possibly give me your advice.
I really appreciate it. I am pretty overwhelmed. It has now been 2 months since diagnosis and I am still pondering the options. I am lucky to have the time to do so.
MizMimi wrote:
I have DCIS Stage 0 Grade 3 comedonecrosis. I initially wanted a DBL MX and scheduled the surgery. The surgeon and I had words about it and he also needed to change surgery date, so I decided not to reschedule with him and met a new surgeon, who is his partner and she is female.
She said that I am a perfect candidate for lumpectomy with rads. At this point, I am no longer wanting the DBL MX, but am still wanting the UMX to avoid radiation. This is a LEFT breast cancer and I am reading studies showing the heart and lung on left side are in the field of radiation and this really concerns me as I already have some minor heart issues and it is strong in my family.
Anyway.. she convinced me to see a radiation oncologist at a facility closer to my home and speak to him before I decide. (Her facility is short on radiation oncs and it was hard to get an appointment, so I did not even bother after it was canceled and moved around a few times.)
I spoke to him yesterday afternoon. He said that he can and will make sure the heart is not in the field of radiation and that they also will be doing ACTVE Breathing Coordinator where you breathe with a device and hold your breath while the radiation is active. This pulls your chest wall and lung/heart area further away from the beam.
He almost has me convinced to do it. Almost.
Things I do not like:
1. He wants to do 6-8 weeks of radiation. I have a call into his office to see if I can do the Canadian method.. something I forgot to ask while I was there.
2. He is not concerned with a cyst on my thymus gland that was found during the breast MRI. I also asked when I called today why he is not concerned with it.. I know thymic cancers are rare, but it would be my luck that it is cancerous and I just want to know how he can tell that it is not cancerous.
3.He does not do prone treatments...only supine and said that it is hard to re-align each time when you are doing prone.
I will hear back later this afternoon on my remaining questions. (BTW, He did say he has 5 cases of mastectomy patients whose cancer reocuured. So that is not a fail safe plan either.)
If this was you, would you do lumpectomy with radiation? I am 44 and just do not want to risk my heart and lungs but I also know a mastectomy seems like such a harsh surgery for DCIS!! He said I can't skip radiation after lumpectomy due to high grade. But with mastectomy, I won't incur the risks of radiation. There are more risks and side effects to a bigger surgery, I know. I do not have node involvement which is great and they saw no need to do Oncotype test since they know it will be a high % due to the comedo necrosis, even though it is only 1.5 cm in size.
I also know that I will be signing a consent form that says I will possibly have heart and lung side effects, which is not what he is saying verbally.. they probably make a one fits all consent form but it is still disconcerting.
UGH! I wish this was over. I am thankful to not have invasive cancer, but the options for high grade dcis are overwhelming.
I appreciate everyone's opinion and I realize this is my choice to make. I would just like to hash it out with you smart women. Thank you all.
P.S. They do not test for her2 status for Dcis and I am BRCA negative and hormone sensitivity was only at 5% so BS said no hormone treatments necessary.
family history.. mom was 48 and stage II and needed chemo but no radiation since she had DBL MX. Her recon was hell and had several major surgeries. Grandmother died from mets related to BC. Not sure of her stats.
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Mizmimi: Have you heard back from the RO about your concerns?
I'm sure other more experienced ladies will come forward with well-reasoned well-written thoughts and words of comfort...I just have two questions: how many patients has the oncologist had in total? (what percentage of his total is five?) how do you feel about having one natural breast and one flat/reconstructed? There is no correct answer for this, if the surgeons and oncologists are offering you a choice without expressing a preference one way or the other.
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Hi queenmomcat.. no response from their office yet! He said he's been doing this for 30 years so I would guess his 5 patients with reocurrence might have been said to me to let me know that choosing MX does not mean that I won't face this down the road again.
Hopefully I will hear from his office soon!
Thank you!
Forgot to add: I do think it would be odd to have one recon breast and one normal one with feeling. I also do think that MX is a major surgery and probably too much of a surgery for DCIS. I just don't know if can live with the heart/lung risk issue from rads
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MizMimi, I had an Lx, left breast, and 33 radiation treatments. Granted I'm older than you, 70, but I thought that my BS was right and I am happy with my decision. In your profile you said "no onco score as is high % most likely." That to me implies you would need chemo. Is that the case? An Mx would not change that. I think, and I'm certainly no doctor or nurse, that with your diagnosis, an Lx would be a good choice.
Your RO sounds very experienced. Did you feel comfortable with him? Did you feel like he was telling you the truth - all of it? If the answers are yes, then go with his recommendation and have radiation. Nothing is guaranteed with breast cancer. We just do what appears to be best at the time we make our decisions. I assume you have told him of your heart concerns and family history. If he thinks it is not a problem, then likely it is not.
But whatever you decide, just go with it. Do NOT second guess yourself. Go wholeheartedly. You are the only one who can decide what is best for you right now with the information you have.
Think positive!
HUGS!!!
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MizMimi, I was diagnosed at 49 and opted for an Lx.
A UMX is a huge surgery, with it's own long term consequences. My BS told me to think about it, but that an lx was all that was necessary. It seems kind of silly, but I wanted to be able feel my kids hugs. Since an lx with rads had the same long term results as a Mx, I went with lx. The recovery time is different. Women hate their tissue expanders, too. Most of the posts I've read, say the tissue expanders are more painful than the mx. I'm not trying to talk you into a lx, just sharing my experience and what I've learned here on the boards. It is your decision and I support what ever you decide.
Radiation is doable. I had mine in the supine position, which is the most common position. My RO said the amount of lung tissue that could be effected was 2-3%; and amount I would not notice. Several women posted about left side rads where they controlled their breathing to minimize rads to the heart. They seemed satisfied with their treatment. Every 5 treatments during rads, I was xrayed to make sure the exact area to be treated was treated.
My scans showed nodules on my thyroid. My docs stressed that it was important to treat the cancer that I knew I had, and follow up with my GP on other scan findings (which in my case are usually B9).
Where are you located?
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MizMimi, I was diagnosed with DCIS grade 3, comedonecrosis at age 64 in left breast (last December). I did briefly consider Mx because, like you, I was kind of freaked out by the idea of rads. However, I decided I was more freaked out by the much bigger surgery (Mx) and probably reconstruction. My Lx surgery was pretty easy, and afterward my pathology was eventually downgraded (by Johns Hopkins pathologists) to grade 2. But that didn't really make any difference in treatment options, and I did feel I needed to do radiation because of the grade of my DCIS. I believe it's possible that some of us with DCIS are being overtreated, but we have no way to know that, so it only felt right to do the rads.
Rads was not that bad, other than the major inconvenience of having to do it 5 days a week, with a long commute each way. I was able to do the "Canadian" or shorter protocol, of 19 total treatments (including 4 boosts at the end); one of the reasons I chose Johns Hopkins instead of my local cancer center was because this was available, rather than almost twice as many treatments locally in the older method. This was huge for me, because it really did disrupt my life during that month when I was having treatments. Prior to my first treatment, my RO showed me my treatment plan on the computer, and how it would not even touch my heart at all. She was very pleased with this! Naturally, I also found it reassuring. There is a tiny risk of rib damage, but most likely no problem. I felt that the risk of complications from mastectomy and reconstruction was greater, and recovery would have definitely been longer and more painful. Six months after the surgery, the scars are much less noticeable than I thought they would be the month after surgery. Healing takes awhile, but it does happen. I'm very glad I made the decision I made. Hope this helps a little, I know it's overwhelming at first.
Oh, and I asked about the controlled breathing technique for rads, and was told that they don't use it at Hopkins. They feel that it risks changing the position that is so carefully planned, so they just have you breathe normally.
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Nash, thanks. I cancelled it tonight, feeling relieved!
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Kay, glad you cancelled the appointment. Maybe if we were 20 or 30 years younger plastic surgery would be more appealing. Not saying that we don't want to be attractive but I think we've learned to be comfortable and accepting of our imperfections however they arrive. And you and I don't *have* to have surgery to replace what was taken away or to balance out very mis-matched breasts - we're lucky that way.
HUGS!
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@ PontiacPeggy: Yes I felt comfortable with him. Regarding the oncotype %-- not that it would be so high that I need chemo.. they said not worth testing it because it would not be low due to the fact that I have comedo necrosis. So basically, I need radiation no matter what so no point in getting it. Thank you... I will try to think positive and not second guess my final decision. TRY!
PoppyK: It is NOT silly to want to be able to feel your kids hugs!! I totally get that! I'm in Oregon. I really don't want the UMX.. I really want to feel okay and comfortable with radiation before I proceed. I really envy women who have it all figured out and feel good about their choices. I hope to be there soon!
kayfray: Thank you for your insight. I think.. maybe I would not be as terrified of the rads if I was 20 years older. Something about being in my 60's with still a great many years ahead of me and having to suffer consequences of radiation scares me.. I too want the Canadian protocol and will find out tomorrow why or why not. I have a feeling he doesn't want to stray from his 6-8 weeks recommendation. And the breathing coordinator.. it is very interesting that John Hopkins doesn't do that.. they make it sound over here like it is the latest and greatest at keeping the heart/lung/chest wall out of the way.
Thank you all for your helpful suggestions and replies!!
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MizMimi - You might want to look at a NCI center that offers IORT. It is done during a lumpectomy and is half the amount of radiation and is very localized. You would need to be evaluated to see if you are a candidate. With your small size lesion, you might be a good candidate. I also was afraid of radiation side effects and got a second opinion at another NCI center where I had my procedures done. My first opinion surgeon didn't even mention the possibility since they don't do IORT at his hospital.
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@gypsyjo-- He said that he would not recommend IORT due to proximity to my subpectoral breast implant. But I will definitely go look at the NCI website and read more about it! Thanks
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kayfry -- Great to hear from someone who is farther out from all this business! Nice to know that you're OK with how you're doing. I'm hoping I won't want any PS done because I'm not a fan of more surgery... My tumor was at 12 o'clock, so my nipple is pulled up a bit and I'll probably have a pretty big divot once my seroma goes away... but I'm getting used to it. Just getting back to a more normal life is my immediate goal!
Hope your hubby will heal up soon.
Can't wait until Medicare. Insurance companies are doing some crazy things out here, buying each other up and stopping some forms of coverage (such as the Independent plan I'm currently on!). Bleh. Hopefully I can find something decent in the new year...
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Mizmimi- ask about IORT. I am having that with my LX. It's a one time shot during surgery. Like gypsyjo said, there is a stringent criteria. But , if a candidate , that might address some of your radiation concerns.0
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MizMimi, do explore all the radiation options mentioned by the ladies here. Most of us have few SEs from radiation - even long term. Try to feel comfortable with your decision.
HUGS!!
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Hi everyone! Did a lot of reading trying to catch up. Been on and off lately .
Just had my first chemotherapy TCH, yesterday. It was so surreal. Still couldn't believe that it was me doing this! I cried, I was such a tough cookie before BC. I feel like a baby sometimes! Anyway I did well. Just waiting for the side effects of this to hit me. Kinda scared.
April 25, as I look at my poor little boobie with a giant divot in it, I accept it as a battle scar. Your situation sounds similar to mine, as to the location. I was first told that the appearance of my breast would not be changed, but they found a second tumor, so it did. Wasn't sure about it at first, but I'm almost healed and decided that I won't have any more surgery unless absolutely necessary to save my life. My little mutilated boobie reminds me that I am strong! IDK, just helps me deal with it.
Love and hugs and the utmost respect to all of you for the support, advice, humanity. I hope I can give some of what I've been able to find here back somehow. I'm gaining strength again, so hopefully.
oh yeah, Poppy, yes I've been to Michelle's place, Best place ever!! They have been so helpful and supportive . They gave me the beautiful wig I have!
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Peggy, you're right (and you are too, Nash, about more surgery!) Yes, maybe age has something to do with it. I do feel, at my age now, that I don't want to waste any more time on surgery that isn't really necessary. My husband is totally supportive and would be there for me if I wanted to do PS, but never thought I needed to do it. And maybe this is helpful for you ladies, of any age, going through Lx and rads now or more recently: Seeing such an intimate part of your body disfigured from surgery is a bit of a shock, or at least it was for me when the bandage came off for the first time and I got a look. I thought it was way worse than what I'd been expecting, and maybe it was, but my BS wound up having to take out more than twice as much tissue as anticipated at my pre-op appointment. Since I had very little breast tissue to "spare" (make that none!), there was a pretty significant distortion. But that was 6 months ago. Even when I saw the PS several weeks after my Lx, it still looked much worse. The scar was huge and ugly, and PS said it was adhering and pulling everything down, and that she could release that in a later PS and also "rearrange" some of my existing tissue. I didn't and don't want any implants and she wasn't super gung-ho about doing fat grafting for this, though she said we could consider it. She wanted to see me 3 months after rads to assess how things were looking and said she might change her mind then, but wouldn't contemplate doing plastic surgery until toward the end of this year. Well, fast-forward to now, and things do look a lot different, and better. It seems to me that the scar somehow kind of "released" on its own to some extent, and it's quite minimal now. Also I've probably just gotten used to the way it looks, and have gotten back into my life and find I have zero interest in more surgery, more pain, more down time from riding my horse and doing all the other things I do, and more obsessing about how my breast looks! I think I came through rads well, since I don't have any hardness or skin issues or further shrinkage that I can see, other than what was taken in surgery. Things have sort of filled in a bit, maybe.
My point is, be patient if you're undecided if you want to do plastic surgery after Lx. Everyone told me that, and they were right. Maybe in the future I'll change my mind and want to do something, but I can always do that if so. Probably I won't. I have collected many bumps and dents in my life, so this is just one more.
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boblajo, very well said about the battle scars. I was also told the appearance of my breast wouldn't change much, but then they found a second area of DCIS, and so it did. I think that was the main thing, that I felt kind of mad at first that I was expecting one thing, and got something else instead. But if they hadn't found that second area in advance and gotten it out, who knows what might have happened down the line? I see you're early in the process, bet things will look even better for you 6 months down the road.
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april25, I wound up with spectacularly bad timing with insurance and my DCIS diagnosis. Long story, but after my husband retired last November, he went on a Medicare Advantage plan, but I wasn't old enough yet, so I had to buy a private plan through our state's health exchange. As soon as I started catching up on a lot of routine medical care I'd had to put off because of lousy insurance before, I was Dx with DCIS. That insurance policy lasted me 2 months, during which time I started racking up the big bills we all know goes with this territory, and then in January they raised my premium by quite a lot, still had the high deductibles and out-of-pocket limits that started back at zero in January, and had only just really met my o.o.p. limit not too long before I completed all my treatment, and shortly thereafter, in June, I reached the magic age of 65 and got my own Medicare plan. Yay. My husband, of the recently broken tibia, is having a lot of appointments with doctors and physical therapists lately, and he has to pay a co-pay for everything, whereas my supplemental "F" plan covers everything with no o.o.p. expenses. I wish I'd known last year what I know now!
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MizMimi, I can understand that being Dx at a younger age does make a difference. However, don't assume that rads will necessarily damage your heart and lungs, because it very likely won't. I know we're all different, but as I said, my radiation was designed to completely spare my heart despite the fact that it was my left side. I was also assured that there would be minimal lung effects, if any, and that I would probably never notice any problems at all with my lung. I've never been a smoker, so maybe I have that in my favor, and I don't have other lung issues. But talk to your RO—in my case, at Hopkins, I had a radiation nurse practitioner who works with my RO who was very reassuring on these issues, because I was also worried about it. But it's important that you have confidence in your radiation team. Also, if you want the shorter, Canadian protocol, maybe you can get it. Are you near a large research/teaching hospital at all? They would probably be more likely to offer it. I think it can take longer for the community hospitals to get on the bandwagon with new standards—although the shortened protocol has been well-proven to work just as well, and that's been known for more than a decade. My local place wanted me to do the 33 treatments, I think it was, over 7 weeks duration, and I didn't want that, so I went to Hopkins (where we had already availed ourselves of other medical stuff like my husband's major back surgery a few years ago). I had to drive only a little farther and was able to complete the entire course in less than a month. Keep looking, keep asking questions, until you're satisfied. And then, yes, once you make your decision, don't second-guess yourself. The only way around it is straight through, and soon you'll be on the other side!
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I had a lumpectomy and 3 lymph nodes removed a week ago. I have swelling in my whole breast still, not a lot, and it's not the incision site but all over. Is this typical? Is it lymph fluid that hasn't found it's new pathways yet or just typical after surgery swelling? This is my first surgery ever so I have no idea what I should be expecting beyond what is in the post surgery notes. I am assuming it is normal, just checking! Thanks!
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Welcome, KYphoto. Your swelling is absolutely normal. All that tissue has been "assaulted" and is trying furiously to heal (one reason why you should be taking it easy). Fluid likely is settling in there but it dissipates, just absorbs, slowly. You'll find that a soft bra, such as a Genie bra, is most comfortable for the next couple weeks. BTW, most of us find that damned lymph node incision to be the most annoying thing on earth. The poor booby heals up, looking different than it used to and is fine. The underarm stays sensitive for quite some time - don't worry about it, this is normal.
Be aware that you may get "zingers" - the nerves sending sharp little messages that they aren't happy. They go away as the nerves heal up.
Please make sure you have filled out all your profile information and make it "public" - it helps us immensely when answering your questions to know your diagnosis, surgeries and other treatments.
Ask away, we're here for you.
HUGS!!
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MizMimi - Chiming in... Did the breath-hold, shortened Canadian version after lx left breast. CT scan before to look at heart, lungs - 3/2015. CT scan post rads was this week. I have a small amount of fluid in left lung "compatible with post radiation changes" though I didn't know it. I'm told it will resolve. My heart was "unremarkable"..... I finished rads mid-April. I'm back at the gym living life pretty much as I have all along ..with the exception of still undergoing targeted chemo treatment every 3 weeks....In my case the breath-hold method did what it was advertised to do --> protect my heart....
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Hi Kayfry, Good to see you! I always enjoy reading your posts. The information you learned from your experiences on this BC journey are so helpful. So sorry about your DH fracture. I hope he is doing well with his recovery. I know you love horses, so I want to share my boys' summer camp experience. My 16 and 12 yr old sons went to boy scout camp a few weeks ago. I strongly suggested that they take the Horsemanship merit badge while they were there. One signed up for it, the other switched once he got there. They had the best time learning about the horses, grooming them, cleaning them, riding... They had to take care of the horses, learn about their health and so on. They came back with the best stories. No stories about archery or boating... just about Patches and Barbara. Yes, one of the horses was named Barbara.
Regarding scars: My PS suggested massaging them to soften/minimize them. It was odd and hurt a little, but it did "loosen" them up and release what ever they had attached to. I recovered range of motion, too.
Kyphoto, I had a lot of swelling, too. Some was blood/bruising, some other fluids. It took a while to go down. As long as your breast isn't hot and red (sign of infection), you should be okay. If you are concerned, call your BS. (They work for you!) Be sure to make a list of your concerns so you can discuss them all on your follow up visit with the BS.
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Mizmimi, Here's a link to a study which was published Jan 2015 regarding radiation, heart issues, breath holding and so on. You might find it helpful. BTW, don't rely on Dr. Google. Make sure info is from reliable, peer reviewed sources. Wishing you the best as you make your decision.
http://www.sciencedaily.com/releases/2015/01/150105125918.htm
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Thank you! I don't have all of my results back. Well, they are probably back but I go for my follow up on the 21st. I could call but I figure if it is critical they would call me and otherwise I could wait and talk with the surgeon. I appreciate the encouragement!
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