Did anyone delay surgery?
I was diagnosed with DCIS and recently they discovered another suspicious lesion. I want to have a double mastectomy but I want to wait until March to have the surgery. Has anyone else waited this long? Is this crazy?
Comments
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I was not DCIS and delaying any treatment was never even vaguely an option. I will say though that I would never think of postponing treatment and leave a growing/progressing in my body for 5 mths. In that long, it could become much harder to get a,'good' prognosis.
Just my thoughts - I want to fight with everything possible as soon as possible (with 'anything'/everything that comes up) for the best outcome with no regrets for doing nothing or procrastinating.
We do have to do what we think is best for us and not what others would do though.
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Could you confirm that the other lesion is not cancer and remove the dcis with a lumpectomy now and then do the bilat mast later?
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I would not be comfortable leaving an untreated growth in my body that long.
I am on a trial protocol of neoadjuvant (pre-surgical) Femara. If I respond well to Fembar we may delay my surgery for 3-4 months longer, but it would be actively treated during that time. I'm fine with that - in fact, very happy with it - but would not leave it untreated.
I think that because we can't see it, and probably can't feel it, and we feel perfectly healthy, it's easy to forget just how pernicious this cancer is.
I think Ridley's suggestion makes a LOT of sense.
Good luck, whatever you decide.
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By the time I have my BMX in 3 weeks, I will have waited almost 9 weeks from DX to treatment. You have to make your own decision and the doctors will give you their opinions, but personally, I am going out of my mind with worry.
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The initial area of DCIS is believed to have been totally removed by the excisional biopsy. This new area....we just don't know what it is yet. I would love to have it done sooner if it wasn't for the holidays, and I'm also trying to make sure that I have enough help lined up for afterward. (six homeschooled kids) My husband can take his vacation in March and my mom (schoolteacher) also has 10 days off for Spring Break, so I would have 3-4 weeks of help if I did it in March, as opposed to maybe 1.5-2 weeks of help if I did it sooner. Pending the results of my genetic testing, they are wanting to do hysterectomy and oopherectomy at the same time, so I feel like I will really need those extra weeks of help. Maybe I'm in denial though, and you all are right that it would be inadvisable to wait that long....
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I'm 29 years old, which makes all this surreal. Hopeful is probably right, and I'm just not fully appreciating how serious the situation could become.
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Urgh, I thought I was young (35). All you can really do is get your doctor's opinions. My dr. is currently out of the country for 3 weeks and refused to do the surgery before he left. When he said that, I asked for the scalpel and told him I would take care of it myself. (I have a dry sense of humor). I can't wait to get this out of me and put this surgery behind me. If they would take me tomorrow, I would go. -
yes, it is crazy to put off till March, get a second opinion if you must but do it lady as it will not get better, only potentially worse
I delayed my lumpie for 2 weeks, lots dif but.... -
I was scheduled for Thanksgiving week, but caught bronchitis. Had to wait a month to get well over that. Made me crazy waiting, I wanted it out.
Can you line up friends and other family for help? Can your kids help? Older ones can do laundry.
But this is about you, take care of you first, the rest will fall in place
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Seems like a long time to wait. DId you definitely decide to have all the surgeries at one time? Still seems pretty rough to me to have it all done at once.Can they do a biopsy or lumpie of the suspicious area now,, and then you get the BMX later?
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No, do not put it off that long......at the very least you need to find out what the suspicious lesion is before you make any decisions about waiting. Although it is wonderful if everything could fall perfectly into place, it is your LIFE you are talking about here!
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Hi there,
I am going to be a little different in my response. You need to look at the whole picture. How large and what grade was your DCIS? Does your physician have any clinical concerns with regards to lymph nodes? What is the story on the second lesion? Have you had a breast MRI?
I would say that if everything points to low grade, low probability of recurrence, and stage 0, and if your genetics come back all negative, then I think it might be possible to wait until the beginning of March. However, you need to look at the entire picture, get everyone aligned and make sure you have support from your medical team. Remember, many of these lesions are very slow growing and take years to even show up on mammograms. That doesn't mean we should be non-chalant about it, but if it truly is a small DCIS that is grade1 with ER/PR+ and HER2- and no genetic concerns, you could take some time. I personally almost waited until next April, as I have not been with my company for at least 1 year and am not covered by FMLA...I chose to just trust that my pharmaceutical company would not fire me for being out with breast cancer, but you never know. I go back to work on the 24th of November and plan to hit the ground running!
Good luck and let us know what you decide.
P.S. I also want to encourage you that if you have a mom's group, a church small-group/base camp, or any other community support that you feel strongly involved in, you could always ask for help and you will be amazed at how willing people really are to step up and help out their friends. We are our biggest enemy by not being able to ask - whether it is self pride, embarrassment, etc... However, humans are meant to live in communities and even though we are all busy, we always feel good when we can take some time to help out a friend.
Sincerely,
Akitagirl
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The DCIS isn't the ral concern is it? Even with DCIS, I was told to make the arrangements and make up my mind about what I wanted to do "Sooner rather than later, within the month would be good!" mine was mostly, all grade 3, after the grade 2 was removed in the biopsy, you haven't mentioned your Dx status.
Although this is absolutely your choice, I would be considering doing a lumpectomy, or biopsy, at least, on the suspicious area. You can always do the BMX later when it is more suitable for you. with the other surgery.
If it were me, I couldn't see myself putting it off, not knowing what was in there. What are your team saying about it?
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I couldn't wait to get the cancer out. I was worried about it growing.
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You'd be surprised at how easy the recover is from a laproscopic hysterectomy. I went back to work 3 days later. If they are going through the abdomen that would require a longer recovery. They typically go that route if you have something suspicious.
I would suggesting getting this taken care of. I've seen time and time again woman going in with DCIS and a final path including IDC. I wouldn't wait until you have care lined up, I was surprised at the help i got from acquaintances. There will really never be a good time, something else will come up. That's life...mine has never gone according to plan.
I was also not prepared for my kids to be as involved and understanding what was going on. My daughter says to me a few times a month that shes so happy i am better. My daughter was 5 at dx and just starting kindergarten - unfortunately shes seen more that I would have liked. My son was 2.5 and he doesn't remember anything at all. Now my daughter is 7 and my son is about to be 5
My #1 regret in my whole journey is waiting 6 months to do a repeat mamo. They said it didn't looks suspicious and money was tight so I came back in 6 moths and BAM...triple negative IDC with 1 intramammary node positive. The node would have not been positive if I did the biopsy in April vs October. In 6 months it did spread...:(
Please don't wait, there will never be a good time.
Jen
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It really does depend on which option stresses you out less. Mine was somewhat delayed due to differing physician opinions and personal reasons. Told all was clear after Lumpectomy in August, oncologist sent me on to radiologist who was concerned about the 3 remaining spots of DCIS not tested. Referred to U of M specialist and advised to have Mastectomy in late August which I scheduled for early November when my husband's work season was pretty much finished up. (His employer is also not the least bit family oriented so while it shouldn't be a factor, it is). Delayed reconstruction so I could be healed/somewhat ready for my son's surgery in mid-December. While it may not be ideal for you to wait a few months, sometimes the other stresses in life play more of a role than we'd think and you really have to do what is most tolerable for you.
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Thank you all so much for your responses. It's so wonderful to be able to talk to other women about this. I realize now that I didn't give much information in my post. I don't want to just vomit a ton of info on all of you, but here goes.
I have a family history of numerous cancers on both sides of my family. 9 breast cancers (most age 30s-40s, most fatal either initially or during recurrence), 3 uterine cancers (30s), 2 ovarian cancers (30s), and a host of other cancers (liver, pancreatic, bladder, prostate, colorectal, blood cancers, gastric, melanoma, esophageal, etc). I've always had tons of problems with my breasts, numerous cases of mastitis, abscesses requiring surgery, etc. When I was 22, I found a large lump in my right breast and went in to see a specialist. Mammogram and ultrasound revealed fibrocystic breast disease with a large cyst (no biopsy, just dx based on images). I was told to quit smoking and cut down on caffeine, which I did. I've still had pain all these years, but not so intense I couldn't even wear a bra like it was in 2008. Several months ago, I started having bloody nipple discharge on the right side and green discharge from the left. I assumed it was the just the fibrocystic thing and not having insurance, I put off going in. I got insurance again a couple months ago, and my husband asked me to go in just for his peace of mind. It was the Friday before Labor Day, and my PCP got me in to see a breast specialist Tuesday morning. Mammogram and ultrasound came back fine besides noting dense fibrocystic breasts, but since I was still having spontaneous bloody discharge from the right side, she wanted to do a nipple exploration and excisional biopsy of my milk duct. I got sick the night before surgery and had to reschedule, and before the new surgery date, I started having blood come from the left side as well, so ultimately the surgery was performed on both breasts. The day of the surgery, the surgeon told my husband that her eyes weren't microscopes, but that but she thought everything she could see just looked like fibrocystic changes and was fairly certain everything was benign. So it was pretty shocking when the pathology report came back showing low-grade solid-pattern DCIS in the right breast. She said the DCIS was completely filling the milk duct, so she didn't think that would be what caused the bloody discharge. She said it might have been caused by the fibrocystic condition, duct ectasia they noted, etc. or by another area of malignancy further into the breast than where they looked.
I knew about all the cancers on my mom's side of the family, and also the issues like every woman getting a hysterectomy fairly early in life, but not on my dad's side. My dad came from a very....."difficult" family and pretty much everyone is estranged from everyone else. After my dx, I was told I must compile a complete family history, so I had my mom call the only person who is still on speaking terms with everyone else. She really came through for me....called a million family members and called back with a complete family medical history, and it was shocking. For starters, my dad is one of 9 siblings, 7 have had cancer and only 4 are still living. Several cousins who I have never met have breast cancer. I could go on and on, but basically, it's crazy. The oncologist said my family tree is "ominous" and sent blood off for the Myriad MyRisk test that checks BRCA and 24 other mutations.
So with all that going on, they decided to to do an MRI, especially since there were imaging issues with the density of my breasts, and the MRI showed another suspicious lesion, which oddly enough is in the same area as my lump from 2008. I'm hoping this is a good sign and will come back as a benign something or other, despite being classified as "highly suspicious." Another concern, the MRI report says "There is marked benign background breast parenchymal enhancement which somewhat limits evaluation for masses." The radiologist basically said we needed to try imaging at another point in my cycle to see if a different state of hormone fluctuation or whatever might make it easier to see. I mentioned that would be difficult since I have a period every 2 weeks, and that was a game changer all over again. They start asking about my gynecological history and now there are a million new concerns: the cervical dysplasia they feel was not adequately followed up on, the ovarian pain that was attributed to the cysts I've had since my teens but hasn't been scanned in a decade to confirm nothing else is going on, the crazy periods and really awful vulva symptoms that were attributed to hormone issues, but never biopsied or investigated (hormone labs have since come back normal). So now I'm seeing a gynecological oncologist next week as well. Pending the results of the genetic testing, and I assume the new biopsy results if I can get back in the MRI machine, their tentative recommendation is bilateral mastectomy, oophorectomy, and total hysterectomy. And yes, they want to do it at once. I could insist on doing it separately, I'm sure, but I would have to wait another year to have the second surgery, so I would have to think long and hard about which I should do first. Assuming the genetic screening comes back with a mutation identified. Oncologist said even if everything came back negative, we would have to have some big talks because she is still very concerned about my family history.
In short, this whole thing is spiraling totally out of control. I realize how whiny I sound when I say that, but I need this to not be happening right before the holidays, and right before my baby brother's baby is born in a few weeks and they need my mom there with them out of town. My husband just got a promotion at a brand new job, and I'm worried taking vacation already will jeopardize that. I know my priorities might sound crazy, but I'm just struggling with believing all this is really happening to me and is as urgent as the doctors seem to think it is. I literally never thought the biopsy would come back as anything other than benign. And I don't know how to logistically make a surgery work right now. -
But I think after hearing other's experiences, that I need to figure out a way to make getting this taken care of a priority, and stop feeling so guilty about it.
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Why is it 'better' for your KIDS and Hubby to do nothing until it's 'more convienent? You have a cancer in your body which will only progress - it ain't majikally going away waiting for a 'better time' - that never happens!
IF you choose to do nohing for many months because the time is 'inconvient' for you and in those months it has progressed, how do you justify that to your kids?
Maybe I'm be a bit 'brutal' but as much as Hubby's matter, kids have their whole life ahead of them. When he was 9 - Hubby's Mom died of Cervical Cancer. She had fought so hard and was set on being at home for Christmas morning for him. The last time he saw her alive was that afternoon when the ambulance took to the hospital.
Yes, our decisions on TX are ours, but all who love us just as impacted.
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Kicks, that is what my husband said, That if I was so dead set on postponing this until after holiday crafts, going to the Christmas tree farm, festival of the lights, etc that he guesses I better be willing to take the chance that it could be the last time they get to do that with me....OR I could skip one year to get well, show the kids that is more important than everything else, and pick up our traditions again next year. I thought he was being dramatic, but I see now after talking to all of you that the issue has probably been that I'm still in denial. I'm so sorry for your husband's loss. Thank you for sharing that with me.
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Mommy, do speak with your docs about how long you'll actually need help; it might not be as long as you fear. I did not have a mastectomy, but after my hysterectomy, and again, after my lumpectomy, I stayed with my adult son and his family. My room was in the basement and, from day one in both cases, I regularly charged right past the main floor and up to the second floor to use the bathroom. Did the bathroom charge a lot as I was having "issues." No problem at all. I was not picking up small children, of course, but I do remember getting down on the floor to hold my kids #1 and #2 when #3 was born and he was about all I could lift. Six kids might be a whole 'nother challenge, of course; I certainly do not wish to minimize that!
Are you part of a homeschooling or church or community group? Chances are your mother and husband are not your only options for help around the house. And maybe your older children will rise to the occasion and be more help than you think.
Good gracious, if you can homeschool six kids, there can't be anything you cannot manage!
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Boo on the doctor who did a mammogram when you were 22. What was that doctor thinking?
When it comes to all the surgeries and childcare issues you need to prioritize - people first, then money, then things - like Suzy Orman says. We put our 18 month old in daycare 2 days a week after my surgery and during the chemo and radiation. And I do know that it's expensive, we ourselves racked up as much in daycare fees as in my copays. But you would need the daycare for only about a month. And it may be even cheaper to hire someone for a month to help you. In the bigger picture it will be worth the expense even if you rack up some credit card debt. There is only one of you and your health is priceless.
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@Brookside, you are right, I have had several other homeschooling moms from church offer to help. I'm just a very private, independent person. I might have to get over that I guess.
@Inks, if I remember correctly, they couldn't tell what the lump was on the ultrasound so I guess that's why they did the mammogram right after. I didn't realize it was unusual until years later. It was at a prominent breast clinic. I don't know what guidelines are for a woman in her 20s with a lump and strong family history of breast cancer. I guess maybe they should have just biopsied it? -
Let your friends help you now. You can return the favor many times over when you are well again and they have challenges of their own. That is one thing that I really learned from all this.
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I have DCIS and am scheduled for a UMX next week. I also thought of pushing it back until January for insurance reasons. If I have the UMX and the exchange surgey in the same year, I will pay a lot less out of pocket because of reaching my catastrophic limit. But then I developed a new symptom - nipple discharge. That reminded me that even though it is early stage cancer now, it is still growing and who knows how long it takes to become invasive. I want this surgery as soon as possible.
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Mommy - when does your genetic testing come back? It is VERY concerning and I, in both a personal and scientific way, am very interested to see what comes back. Why do you ask? Well, first it should give clear recommendations on when and where to start looking for cancer in you and...remember that we know a LOT about so many genetic defects and have actual protocols in place for screening children of parents with these mutations - in other words, it will help you and your family make informed decisions moving forward.
With all you said...I agree with the other ladies on this board - if you don't take care of yourself, you won't be able to take care of your family as you would desire. Do not let human pride keep you from reaching out for help. Gosh, if I were living near you, I would be dragging your booty to the doctors' appointments. :-)
Said with love.
Akitagirl
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I would also suggest that you start looking for either a neighborhood kid to help out or perhaps a cousin, niece or nephew. Maybe someone in your church family would be happy to earn something providing in-home care for your kids for a few weeks? Get the word out that you need help and make it happen.
I think that worrying about the holidays is burying your head in the sand. I know it's hard to give up activities you love, but think long-term. Really.
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Hello,
Would your health care team even consider delaying surgery? I was diagnosed with DCIS and my surgery was about one month later. But I was diagnosed two days before Christmas last year and because of the holidays it took a bit longer for a tumor board to convene. My surgeon said waiting three or four weeks wasn't a problem but waiting months wasn't an option. I wanted my BMX right away but my mother died of stage 4 BC when I was a teenager and my youngest sibling was 8.
If you were dealing with an elective surgery than of course planning around help and holidays would make sense but this is something that is more of a priority. I had bloody discharge as well in mid December 2013 and we were living in the basement of a family members house because we sold our house and we were fixing up our new house before we moved in. I have three kids and homeschool two of them. It was a challenging time but we got through it. We didn't do a ton of fun activities around the holidays, but we spent a lot of time with family and my kids loved time with their cousins.
I only took about a month off of school around my BMX. We then moved into our new house and our church set up meals for us and helped us move in after I healed. I too am a pretty private person but people really wanted to help and I could have let more people help me if I had let go of wanting to do it myself. It is humbling to ask for help but I'm sure you would be willing to help another woman in your same situation.
I did reconstruction right away but if you want things to be simpler you could just delay reconstruction for later. Reconstruction usually requires more surgery if you go with expanders or it can take more recovery time if you go the route of flap surgeries. I did implants with expanders and took off another week of school around the implant exchange. I made up the school we missed in the summer.
I'm BRCA2+ and I had my ovaries removed just three weeks ago. If you do turn out to be BRCA+ and need to have your ovaries removed the gyn onc could be okay with delaying it as well since you are pretty young to have ovarian cancer.
It is such an overwhelming experience and waiting for surgery and results is maddening. It is easy to want to control things when everything else seems out of control. I'm sorry you are dealing with the situation. As you get more information it will help you figure out all the details.
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@Anne, nope. I asked my oncologist and she said she would turn very scary if I asked again about delaying it. We will be doing the mastectomy in a couple weeks. Myriad is rushing my results so I will know whether or not I have to have the oophorectomy. Two great aunts had ovarian cancer in their 30s, so if I have the mutation, they want them out "yesterday."
I am going to do the same thing and make up the kids' school in the summer. It's just hard for me to let go of my perfectionism, but this will definitely teach me a lot about that, I sense. Our church also does meals for people in situations like this, and we always participate in helping with that....it's just uncomfortable to think of people coming to my house when I'm in my pajamas right after surgery when my house is probably in disarray.....I don't know, I guess I'll have to get over that too. Thanks for your advice.
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Great news you are not delaying treatment - I was one of the can't wait brigade - but my Doc reminded me they were going to keep me v busy with scans etc in the 10 days before I saw the oncologist. I would also recommend accepting help when you can. I personally think it's a form of giving to allow others the pleasure of being able to help you - think how you would feel in their circumstances. What you can do is to convert offers of help in to actual help by suggesting ways which you are comfortable with and feel will help you most, and also suit the person offering. It can be meals, lifts, babysitting, chores, fetching supplies from the shops, or just having someone to keep you company. This way you will get the practical help you need. I know how hard it is, once you have had the diagnosis of cancer, to feel you don't have control over anything. I am now 1 year out from my dx and feel so much better. Just having a hair cut (albeit just a v tiny trim) made me feel I have choices again. It's a long road but you will get through it. Enjoy many PJ days with your family!
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