Lumpectomy Lounge....let's talk!
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Nash, I've also slacked off (though I do walk my doggie about a half mile a day). But I'm finally accomplishing some of my to-do list (accumulate over the past 5 years) - I have bursts of energy. I'm still not where I should be but I'm just happy to feel like doing spring housecleaning (I'm a summer person and tend to do more cleaning in summer).
HUGS!
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Hi Octogirl and everyone--Have been too busy to check in for quite a while, but I want to do all I can to encourage you to keep exercising during treatment, at whatever level works for you. Two days after my lumpectomy I was back at the gym, doing leg and back work only, no arms--and doing this with the surgeon's blessing and encouragement. He said to go back to working out as soon as I felt ready, since a lumpectomy is really only minor surgery (despite the perception of the person undergoing it, of course) and since exercise done wisely is always beneficial. I continued working out right through rads, and the rad onc opined that she wished her other patients were as active and fit as I, since I had no fatigue at all with 35 rads (sailorbev, take note--you can keep this up thru rads!). The added bonus of exercise is weight control, the icing on the cake--because I had the energy to stay busy, I had no time to just loll around and eat empty calories to pass the time of day. So in the immortal words of Nike. "Just do it" and keep on doing it! Nash--I don't envy you the heat and humidity in TN, having to put up with a milder version of it in PA. But try walking early in the morning, or just before sunset to avoid the double H's. Or check out you local malls--surely one of them has a marked, mile-long "walking trail" and walk in air-conditioned comfort--around here walkers can even get into the malls before stores open and have the shopper-less space to themselves.
And for those at the beginning of treatment, another encouraging word: life does return to normal in due time, and those seemingly endless check-up visits taper off. Since I am a "glass is half full" person by nature, I have maintained my equilibrium for these two and a half years by looking forward to those visits (and imaging sessions) as opportunities to learn that I am fine, and cancer free--not fearing they will convey doom-and-gloom-filled messges about recurrence. If/when recurrence happens, so be it--I'll deal with it then. But until that time, and with no evidence to the contrary, I just keep on living life fully. Trudi
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Thanks Trudi for the last paragraph! I love it and hope to do the same someday.0
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hi, I'm new here. Trying to do my research as best I can and am getting overwhelmed to say the least!
There are so many pages on this forum that I haven't read through because I am overwhelmed. Hope it is okay for me to just give my info and ask my question(s).
I am 52 years old. 2 weeks ago I was diagnosed with DCIS, 4.5 cm. my surgeon said he'd do a lumpectomy and then I'd have 6 weeks of radiation. My surgery was this past Wednesday. Yesterday, (Saturday), my doctor called me and said my pathology report came back showing invasive cancer in a small 1mm area. I have an appointment with him tomorrow and he said we'd discuss either going back in to remove a larger margin, or a mastectomy.
What kind of a decision is that to put on a woman? Personally I'd rather someone just tell me what to have done, as I am so clueless. Ugh!
Anyway, has anyone else experienced this? Would it be better to remove the breast in order to prevent reoccurrence? If I have a mastectomy does that mean no radiation? Is that better?
I know a lot of this comes down to personal preference but I'd like to hear others experiences. Also, what questions should I ask my doctor tomorrow?
Thank you
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Lhary, welcome to the club no one wants to belong to! Yes, it is indeed overwhelming. Just one quick suggestion, and I am sure you will get more: if you update your profile with the diagnosis and other information, and indicate in your profile types of information you are interested in (by turning on 'Recommended articles'), you will get articles in your in box geared to your situation. I have found that helpful.
Gentle hugs here!
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Trudi, I also see the glass as half full. Works oh so much better for me. I see the mammograms etc as a chance to validate what I already know - No Evidence of Cancer.
LHarry, absolutely do not rush into any decision. If you feel you must do something RIGHT NOW, then have another lumpectomy. If down the road a mastectomy is called for, you can have one. You can't un-do a mastectomy. Go conservative. I had 6 weeks of radiation and didn't find it onerous. Takes about 10 minutes once you're there. Keep in mind, there is NO one perfect treatment for breast cancer. Each oncologist has his/her favorite way of treating it. The consensus is towards lumpectomies in many cases. No one is going to tell you what to do as much as we all would like that.
Do read the articles here. They will be helpful. When you fill out your profile, be sure to make it public so we will know where you are on your journey and what all the particulars are. Try not to panic. You do have time to make your decision. Don't let anyone rush you. And, please, try to stay positive. Your IDC is small and they removed the DCIS. If your insurance covers it, consider getting an Octotype test done - that helps determine what your course of treatment might include.
STAY POSITIVE and MANY HUGS!!!
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I want to thank everyone for the encouragement on exercise...but I did want to say that I have mixed feelings about the whole 'keep walking' thing: I don't want anyone, including myself, to push themselves harder than they should. This morning, I realized that there is slight bleeding from my LX incision, and it is hurting more than yesterday. No, I don't think it was the walking: but I did feel so good after the walking that I did the dishes and cooked a simple dinner even though my plan was to do a whole lot of nothing (it was also Hubby's birthday and I wanted him to have a day truly free of any chores). I think perhaps I did overdo it just a bit even though I tried very hard to do everything left handed (surgery on right breast).
So, off to walk again, but going to walk VERY slow, and then I really am going to do a whole lot of nothing the rest of the day. Definitely no housework, dishes, cleaning, cooking. You ladies hold me to that, ok? and remember that even fatigue may have its healing purpose.
Very gentle Hugs to all!
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LHarry: another sympathetic "Welcome to the club to which no one wants to belong." And yes--there are a lot of decisions that only you can make with the assistance of your oncology team....BUT it did help me to come here and ask ladies ahead of me on the journey "If you could do it over, would you have changed your decision?"
Sorting out your questions ahead of time is a grand idea. I'd suggest adding "When do I have to make a decision?" to the list of questions, along with the questions you've already raised: "How will this affect my chances of recurrence?" "If I have a mastectomy, will I still need to have radiation?" and so on.
I'll just second PontiacPeggy's suggestion of "Go conservative, and take the time to think about what you want to do." even if you only wait a day. Finding out we have cancer throws pretty much everyone into a panic, no matter the circumstances; I'd known from mammogram one that I had an abnormality in my left breast and I still got brain freeze and melted down.
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Welcome Lharry.....when I was dx'd my BSO layed out all my options and explained that the outcome with LX vs MX were the same in the long run. Some women believe "less is more" (that would be me) and others feel strongly that they want the whole breast removed. This is totally my opinion....but I think as far as the surgeon is concerned since the outcomes are the same the choice is left up to the woman (unless you have a very opinionated surgeon). I'm sure there are cases where a MX is recommended, but when given a choice the surgeon must feel the outcomes are the same. Like I said, this is totally my opinion. I had total faith in my surgeon (he's been at this for 30+ years) Best of luck with your decision.
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Hi everyone -- Have been off for a little while dealing with life and stuff. For the newbies, the board is one of the most helpful and you'll get lots of support and helpful advice from it. It's a great place to ask the funky questions and share the fears, hopes and emotions of all this. Just a couple updates for me -- I'm 5 mos. post lx, completed rads, and am on letrozole. A few SEs from the letrozole but nothing I cannot live with -- mostly night hot flashes at 3:00 a.m. (but the dogs think it is just Mom telling them to rearrange themselves cause I'm pinned under the covers).
Sign me up for the scuba topic (guess you can figure that out from my screen name). We just booked a trip on Cayman Aggressor for December because we know if is pretty gentle and fun diving. Last dive trip was 15 months ago (before bc) when we went to Cozumel and dived with Aldora (and stayed at Aldora Villas which was wonderful). The start of Cayman trip is the anniversary of dx, so will be celebrating hard to have gotten through this. Have my first post-surgery mammogram in November and am counting on NED!
Peggy -- thanks for the info about 1 year of fatigue. That is real. I went back to work 3 days after my surgery, and worked out every day that I had radiation. It really helped me focus on getting through it. However, that was then and now I crave sleep, so much that the early morning workouts have gone by the wayside and I'm too tired at night. Just bought a FitBit and have signed up my scuba friends to compete on daily steps to see if I can overcome this. BTW -- I'm also a Peggy. How did we get so many Peggy's on this board?
The hard part for me right now is that my boss went for her mammo because of me and has been diagnosed with Stage 4 BC. She's doing chemo right now before an Mx later in the fall. I've got so much guilt that mine was relatively easy (small, lx,, no nodes, short course radiation, and AI) compared to what she's going through and facing. I'm trying to be there and help her as much as I can, but this is like going through it all over again and being even more scared!
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Lharry, queencatmom, has it right: MAKE A LIST of all your questions. Keep adding to it every time you think of something new. If you can have someone you trust go with you to your appointments and consider recording them on your phone. I'm like Nash in believing "less is more." You had your Lx very quickly after your diagnosis. Mine was 6 weeks after dx. You haven't had time to process your new reality yet. Just go slow!
HUGS!!
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lHarry,
I think you need to know your hormone receptor status to help understand if the invasive cancer is aggressive, or, like mine, lazy. 1mm is very small, .040". My cancer was 1cm x .8mm and i elected to go the lumpectomy route because I am quite well endowed, and my surgeon told me the chances of recurrence were the same. I wanted to be conservative, and the surgeon I saw for my second opinion said the same as my surgeon. I am now half way through radiation. While a daily grind, it too reduces recurrence risk.
So, make sure your pathology is explained to you before you make any life changing decisions.
You'll find this to be a supportive bunch here, and they have made my cancer summer more doable and less stressful.
~Midgie
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ScubaMom, are you a "Margaret" too? We Peggys must be very chatty
Your trip sounds wonderful. I certainly understand why you are so conflicted about your boss' Dx. That's rough. Keep in mind that each person is different and her diagnosis is not yours. You can be supportive and not scared (well, not too scared). HUGS!!I'm glad that my info on fatigue made you feel better. I do know one thing that contributed to my fatigue was the total inability to make a decision. DH has been out of the house since last September and in a nursing home since November. I cared for him 24/7 for 4 years without help. He will not be coming home. Yet I've been hesitant to make any changes to the house. I guess I've been thinking something really spectacular might happen and he will come home and it will be exactly as he left it. Not going to happen. Parkinson's doesn't get better. After I put all this together and realized what was so paralyzing, I gave myself permission to make any changes I want. I live alone. I'm not sharing a house anymore. I'm sure this sounds selfish. So now I am making a few changes and feel good about it. I am not writing him out of my life. Make any sense?
More HUGS!
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PontiacPeggy -- I'm actually a real Peggy. I was supposed to be a boy and parents didn't have a girl's name chosen until my Aunt Peg called the night I was born. Aunt Peg died of BC when I was in high school. Her sister (that I lived with for a couple years) died of BC when I was in grad school. Thus, BRAC testing so could let my niece know if she might be at risk. However, test came back negative. :>)
Glad to hear you are starting to feel up to making changes. While your DH may never come home again, it will help you to make things better. My DH and I lived across the country from each other for the first 3 years of our marriage. I was the one who moved to Washington DC for a job. He made a bunch of changes while I was there. Now I'm home and those are the changes I won't touch -- but I'll do everything else!
Thanks for the support! Hugs back at you!
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Pontiacpeggy.....making changes to your house makes total sense. Good for you. You are accepting things for what they are...that in no way diminishes your feelings for your hubby. I'm sure he would want you to make your home work for you in your new "normal".
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ScubaWoman: yay, another diver :-) I look forward to hearing your report on the Cayman Aggressor. I just did the Belize Aggressor just prior to my dx and really liked the boat a lot. Ok, we really need that scuba thread....:-)
Peggy: what you describe does not sound selfish to me at all! you are taking care of yourself. That is not the same as writing DH out of your life!
My father is 91 and has dementia, which has gotten steadily worse over the past few years, along with heart issues. Getting around isn't easy for him, I mean, he's 91 and not in great health, on top of the dementia....he lives about four hours away from here, with my stepmom, his wife of 30+ years. Stepmom is significantly younger than he is, but still in her 70s. She has been his primary care giver forever. One of the biggest challenges she faced is that their house is small and not set up for his frequent nighttime wanderings, and she wasn't getting any sleep because of that: plus he really could not be left alone: too big of a risk he'd fall and injure himself or try to do something crazy like drive away in the car. She got a home health care nurse to come in a few days a week but it didn't really help much: he started to become verbally abusive towards stepmom and accusing her of meeting a boyfriend if she even tried to leave for a bit to go the grocery store! We kids would take turns coming up on weekends to give her breaks, but really, that didn't solve the basic issue that she had no life other than caring for him.
It took a bit of convincing, but she finally made the decision that he really needed to be in an assisted living/dementia care placement. And with a bit of help from us kids, she found a wonderful place only a few miles from their home: honestly, I've never seen a placement that I thought was more pleasant for all types of reasons. So after all that time of just caring for him 24/7 and being utterly exhausted and stressed, she is finally able to do fun things for herself now and then! you know: go to a movie, or out to dinner for a friend...or make changes to her garden. It makes me so happy that she is finally able to take care of herself. It isn't selfish at all; now that she has her life back she can make better decisions for my Dad, AND she can take care of herself.
Wow, that was a bit of a digression....The stuff we all have to go through. Sigh. Anyway, glad you are able to change things around a bit to suit yourself, Peggy! You deserve it!
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ScubaWoman and Nash, thank you for being so understanding. It was very hard to write about this since I have been feeling very disloyal. I have not told him I have made changes. He needs to keep it in his mind the way it was. But once I gave myself permission to make changes I felt like a huge load had been lifted off me and that I could really move forward with my life.
Scuba, that's a lovely way you got your name. It does seem surprising that there is nothing hereditary going on, doesn't it? Could something be in the environment be a factor (assuming you all live(d) fairly close together?
HUGS!!!
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Octogirl, your stepmother sounds like she was in the same position as me. It is awful. Never getting sleep. I am quite convinced that the stress of DH's care enabled my BC. If you haven't walked those shoes it is impossible to understand - you are waiting every minute to have to do something for the person you're caring for, you have no desire to do anything but zone out when you can. No cleaning. Fun things are out because you can't leave them. Time for yourself is out - no one there to take over. So you do nothing. It took me about 6 months after DH was out of the house before I wasn't totally exhausted. Now I am still fatigued but feeling much better. I'm glad you were able to convince your stepmother to put him in a safe place. It's an awful decision but so necessary. She was killing herself. Kudos to your family for helping her in this.
HUGS!!
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Lharry
Welcome!! Do you have your pathology report? If not get a copy and read about how to understand it on this website. That will help you decide what to do and help with questions to ask your surgeon.
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Lharryy you have found the right place...take a deep breath, and start to jot down some questions. 1st thing to know is if your surgeon got clean margins around your cancer. If he did, you won't need more surgery. If he didn't you can have a revised lumpectomy if you want to. You may also want to consider genetic testing.
It's also iimportant to understand your pathology report. Your cancer is small, which is good. But knowing your hormone status and your her2 status and your type of IDC is is important.
I like you, had 1.5mm of IDC, and some micro invasion of my dcis. But I have an aggressive strongly her2 positive cancer with dcis that is solid with comedonecrosis. I had 4cm like you. Because mine is aggressive I chose chemo. You may not need that option at all, especially if you are her2-.
My recommendation is to.just ask questions tomorrow and sleep on it before you make a decision. Hugs.
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Hi,
I set up a Scuba thread under the fitness area. Come join me, let's talk about what we loveto do
Midgie
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Lharry, remember you have time to mull over your decision. With this diagnosis our natural inclination is to want IT OUT as soon as possible. Remember that it has probably been growing and developing for years. You have lots of time for considering your plans. There is absolutely no rush.
As for compression sleeves, if anyone is concerned about looks, there is a company online called Lymphadivas that makes fun and attractive sleeves. I've got one that matches my skin color and is covered with "henna tattoos" so I feel sort of hip and chic when I wear it!
Recovery from surgery can vary a lot. Mine was especially long since my surgery was five hours thanks to IORT. The recovery is also complicated by the emotional lead-in from the "I have cancer!" panic. You simply have to take whatever time your own body needs.
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thank you all for you words of encouragement and advice!
Here's another question...the only doctor (besides the radiologist) I've seen is a "general surgeon". He said that after my lumpectomy he would refer me to the doctor who will be doing my radiation treatments. I'm assuming that doctor is an oncologist.
Do I need to be seeing an oncologist now? I have the follow up with the surgeon tomorrow to get my pathology results and to discuss my next steps. Am I seeing the wrong type of doctor for all this?
The Dr said he does 4-5 lumpectomies each week. I guess I just assumed the breast center where I had my mammograms would set me up with who I needed to be seeing.
Gosh it sure does suck to be so uninformed about things and just having to rely on others that you think have your best interest in mind! Ugh! I HATE all of this! (Sorry - I'm on my roller coaster of emotions again)!
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LHarry, most of us see a breast surgeon (not necessarily an oncologist but yours is fine), a medical oncologist AND a radiation oncologist. You are missing only the MO (who does chemo and hormonal treatments such as Tamoxifen). Don't worry about your BS - mine is the same as yours. Often there are tumor boards where the BS, MO and RO all discuss each patient and arrive at a consensus for the course of treatment.
Nothing can be decided until you get all the pathology reports in. You need to know the ER/PR and HER2 status of your tumor. Often an Oncotype test is done to see if chemo would be beneficial for your particular BC.
It IS hard to not know what to do. We've all been in that boat and hate it. But you do the best you can with the information you have. Ask what the tumor board has decided (if anything). If things are still up in the air, devour the information on this site, especially about reading your pathology report. Try to get a copy of Dr Susan Love's Breast Book. While it is 5 years old (new one due out in September) much of the information is still valid and it will help you understand what is going on and many of the options you will have.
Stay positive. And remember this: No matter what you decide to do, NEVER look back and second guess yourself. You will be making decisions with the information you have, guided by doctors you hopefully trust. That's all any of us can do. Again, stay positive!
HUGS!!!
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Lharry....this is how it worked for me. My surgeon was a breast surgeon oncologist (ie a breast surgeon who specializes in oncology). Then I saw a radiation oncologist (a radiologist who specializes in oncology) for my internal radiation treatments. I did not see an medical oncologist since I was not doing chemo. I know it's confusing with all the terminology and the different protocols used by different breast centers. Hope I didn't add to the confusion.
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Nash, my MO is the one handling my Arimidex. Who does your Femara?
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LHarry,
After my surgery, I saw a medical oncologist first. We reviewed the pathology and she ordered the Oncotyoe Test. She believed I would NOT need chemo because of my pathology, my oncotype dx results came back with A low score. I had a consult with the radiation oncologist immediately after the MI and I discussed the Oncotype Score.
I was set up for my radiation simulation and trial runs, then started the treatments 2 weeks after my initial meting with the Radiation oncologist. In September, after my radiation is done, I have an appointment with the medical oncologist where I will start on tamoxifen. I find the cancer center where I am going is pretty organized and small enough that it's easy to reach people.
If you get to meet with a nurse navigator, keep her number handy. Mine has been a wonderful resource through my treatment.
~Midgie
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It was a nurse facilitator at my oncology center, but a rose by any other name is of invaluable assistance! Glue her card to something you can't lose: forehead, refriigerator, car dashboard, whatever. That's what they're there for: to answer the questions that even the kindest and most patient oncologists might not have the time to help you with. Or know the answer to. Otherwise, my pattern's similar to MidgieMoon's: I saw the Medical Oncologist after surgery, even though I wasn't going to need chemo, then to the Radiation Oncologist, and back to MO when I'm done, for tamoxifen. But your sequence will vary slightly, so don't panic if the order of oncologists varies! It doesn't mean that they've suddenly discovered something terribly upsetting about your diagnosis.
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Peggy...since my doc is a breast surgeon oncologist he handles it. I think this is not the norm. He's the head of the breast center I go to. It's nice not to have a lot of docs. I didn't even have to go back to my radiologist for a follow-up. Just saw my BSO.
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Nash, I don't mind seeing 3 different oncs. Each one brings something different to the table. My BS is very gentle. My MO quite fatherly (he's 3 years older than me
). And my RO a lovely sarcastic sense of humor that really appeals to me. They are all in the same complex 10 minutes from home. I appreciate their particular points of view. So this works for me. Obviously, you have a great BSO and he fits perfectly with you. That's all that matters, isn't it?HUGS!
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