invasive ductal carcinoma.....what now?
Comments
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Annie- I'm going through the same thing. I have a 3cm her 2 positive invasive carcinoma that is node positive. I'm 29 years old
I've requested lots of antidepressants and anti anxiety meds to get ready for the fight -
that is a bummer
I was hoping to avoid the radiations possible side effects short term and long term, so I thought 1 week would just minimize the amount and thereby also minimize the effects. If it is the same amount overall, a. I could get just as sick, and b. long term additional cancer may pop up.
I really didn't want any radiation, but I don't want a mastectomy either.
now I am in a quandry -
Hi Annie, Glad your results came in. I posted once that I elected bi-lateral mastectomy. My surgeon talked with me on the decision to make sure I was not feeling any pressure from husband on getting new breasts, which I was not. His advice was if your going to take one might as well take the other one. My onco helped me decide by letting me know about mammograms on breasts and the stress and anxiety that goes along with it. He also very bluntly which I love about him, and said This can kill you and you are not be irrational on making the decision to take them both. I felt confused and after the advice, from both doctors my decision was made and I said Take them Both and best decision ever.
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"His advice was if your going to take one might as well take the other one."
Your surgeon actually said that? I have to admit that I really hate when doctors, particularly male doctors, say something like this to women. If a male doctor had testicular cancer and had to remove one testicle, would he say "if you're going to take one you might as well take the other one"? I don't think so. Male doctors in particular often downplay the effects of having a MX or a BMX. Too many are just too flippant about it.
That's not to say that there aren't many good reasons to have a BMX. But a BMX is major surgery that changes your body for the rest of your life and affects the rest of your life. It's not a small thing. Some women breeze through it and aren't bothered by it but other women have a very difficult time, either physically (with healing, with reconstruction problems, with on-going pain, etc.) and/or emotionally. Many women are surprised by how much they are affected, physically (including sexually) and emotionally. I strongly believe that a doctor's role is to present, in as unbiased a way as possible, the risks and benefits associated with each option and then they should leave the decision to the patient. -
My surgeon left the decision to me, he was very caring and honest and works primarily with BC patients. Also he knew I was headstrong on taking both breasts. He kept me in hospital 5 nights whereas a typical stay for mastectomy is 1 night, he said I do not want you to be at home until your ready and can cope with emotinally and physically.
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What a tough decision to make. I think that if I choose a lumpectomy it would only be because I chickened out because I'm scared of the pain of a mastectomy. I have never had surgery of any kind before. I would be so mad at myself if I had a lumpectomy then had to go back and do more because they didn't get it all. -
i had very little pain from double mastectomy. The morning after surgery i started on plain tylenol. The drains are a nuisance but not painful. -
ritagz - the thing about brachytherapy is that the radiation is concentrated in the lumpectomy wound tract. Is there a particular radiation side effect that concerns you? You might want to have a consult with a radiation oncologist, if you have not already, prior to surgery to have a more clear understanding of radiation types, side effects, and long-term risks.
annieec - about 20% of lumpectomies require re-excision, either for a dirty margin, or too small of a margin. Beesie is correct though, MX or BMX is a big surgery with a number of potential problems, and unless you opt for one-step recon (you have to be a candidate for it and find a doc who will do it, there are not that many) or opt for no recon, you will be having more surgery. -
I had a single mx and virtually no pain, they sent me home with pain killer meds and I never used them, only tylenol xs and didnt take many of them. There was some stiffness but I could not believe how painless it was. They dont cut muscles like they used to, unless cancer is further spread to chest wall. I had never had any surgery ever before either. None of these choices are a walk in the park but they arent as bad as we envision either.. or at least wasnt for me. Good luck in your choice. Whatever you decided everyone has your back here!! I dont know what I would have done without these boards. -
I have decided to get the mastectomy. I'm scared to death but I know it's the right decision for me. I have known it all along, but I kept second guessing myself because of the fear. My breasts are so dense that I would constantly wonder what was what in there because I certainly can't tell from self exams. All of these fibrous lumps would keep me in a constant state of fear. I have lots of lumps in my healthy breast, some of which you can grab between your fingers like a grape. I know that Mastectomy doesn't "cure all" but for my peace of mind, I think this is what is right for me. My breast have been a pain in the butt for a long time....extremely sensitive, large and lumpy. It's probably just fear, but I have this feeling like there is more than what they see on my images and ultrasounds. I also have this gut feeling that there is something wrong with my "healthy side". The healthy side swells a lot especially under my armpit. I need to get through this treatment with some calm at the end of the long road. Unless they are both gone, I could never feel confident that I'm okay. -
AnnieeC..I made the same decision close to this time last year. I am not trying to make you feel good here, I honestly was shocked how little pain I had with my BMX. I was in the hospital 2 nights and I think that was the only time I even took any pain meds. Hang in there! -
thank you lizA17, I know it's the right choice for me. I'm just scared of course. My oncologist said that it could be outpatient even with BMX and reconstruction. I'm going to see if I can have at least one night stay after surgery though. The thought of coming home immediately after scares me. It's so strange that they would send me home right afterwards! -
AnnieC, my surgeon said she couldn't advise me about what to do and just gave all the information she had. I had already decided to do a BMX so she said that was fine. When she got the pathology back she said I had made the right decision because there were pre cancerous changes in the other breast. There is really very little pain (I didn't have reconstruction which makes recovery easier I think) but the area is mostly numb and I only needed plain tylenol the second day. I don't remember if I needed something stronger post op or if they gave it to me automatically but I told them I didn't want it because I didn't want the constipation. Tylenol plain was fine and then the next day at home I didn't need anything.and slept great. I was on Facebook a few hours after surgery and updated my status to "rackless".
I hope you feel better having made the decision. It's a nerve wracking time. -
Annie .....I went through the same thing last year. Have never regretted it. If you choose reconstruction then the plastic surgeon should be in on the operation at the same time. Mine put in tissue expanders after breast surgeon removed breast tissue. So when I finally got up the nerve to take off wrapping and have the first shower at home, I was surprised at how I looked like I had little breasts already. But I was small to begin with. A year later I'm done. The pain was minimal. You'll do fine and you'll find a new normal. Good luck to you ! Let us know when your surgery is. I don't mind sending you a private pic of my reconstruction.......just let me know. -
Thank you for sharing that Wren, it helps put me a little more at ease! You have a knack for doing that, thank you!
Obxflygirl, I'm still learning all the medical terms so you had nipple sparing? I don't think I really even care if I keep the nipples or not. I've heard of people that had them tattooed on and they love it. What kind of reconstruction did you have? The oncologist said I didn't have enough "extra" anywhere on my body to use for different kinds of reconstruction. Hmmm, that surprises me I'm pretty sure I could come up with a few suggestions. When I talk to the plastic surgeon I will have more clarity hopefully. I want to downsize also, my breast are too big for my size anyways. I can't buy tops that fit my body and still fit my breasts. I always have to buy my shirts too big to accommodate my bust.
One more question, did anybody have shooting pains at the site of the tumor? I wonder why I keep feeling this, is it just in my head because I'm so aware of it being there? -
Annie, congrats on getting through this tough decision. You said the most important thing of all: "I know it's the right choice for me." That's what it all comes down to.
Now that the decision is made, move forward and don't look back. You'll do fine! And I'll add to what the others have said. I had a single MX, and I had virtually no pain. I was very woozy after the surgery - I remember stumbling my way to the bathroom with the IV attached to my arm and looking down and thinking "Why is my pee blue?" (it's because of the dye they use for the node biopsy) and then I just stumbled my way back to bed. I stayed in hospital that first night but by the next morning I was feeling fine and was fully alert. I headed home and the following day I was already outside taking a walk around the neighbourhood. Of course everyone's experience is different, but hopefully your experience will be similarly pain free. -
Oh man, that makes me feel so much better to hear several of you say it wasn't horribly painful. I used to watch that show "extreme makeover" and I remember seeing people waking up from plastic surgery crying and in excruciating pain. That is all I have been picturing in my head and it scared me. I have never been put to sleep before either (well, except for when my husband watches the history channel all day on Sundays). -
Annie, not sure where you are having surgery but ask if they use the pain block, that is what I had. They explained to me it was like an epidural sp? for childbirth. The last thing I remember was them giving me the pain blockers and the tech was joking with me about having a martinit, it didnt hurt or very little and I never knew anything until waking in recovery room. They adjusted some pain meds there and later was in my room with husband and son waiting for me, I was just tired but no pain! I remember after about an hour I told them to go home.. I was tired and needed sleep. I stayed one nite, the next morning a massage therapist came and rubbed my neck and back for me to relax.. felt great. So glad you made your decision and are content with it! you will do just great and soon be on this board encouraging someone else about to have surgery! -
The surgery was not bad for me either. I had a pain ball that hung around my neck for the mx and at the exchange, that automatically delivered pain meds to the site over a 5 day period. I was taking Tylenol by day 3.
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Had the similar as you. Decided to have lumpectomy, but no poison or radiation due to possible side effects and immune destruction. Decided to have Ozone and mistletoe therapy in Europe and other natural treatments instead of Chemo, and Hyperthermia instead of Radiation. So far various testing shows tumor markers in excellent range, and circulating tumor cells down dramatically. Taking modified citrus pectin, DIM to control estrogen, curcumin and low dose naltrexone to keep the cancer cells in remission. -
I can also say that I did not have much pain with my mastectomy which really surprised me. I had my surgery at 7:30 a.m. and at 10:00 that same night I was in my hospital bed eating a turkey sandwich and watching TV. Not at all what I expected. They put an anti-nausea patch on the back of my neck so I never felt sick to my stomach. Plus you get pain meds and I did sleep a lot. Reconstruction was uncomfortable but not really painful. Motrin worked wonders for that. -
Origam, tumor markers are questionable in determining actual cancer progression. Furthermore, tumor markers aren't useful in determining if cancer will recur in early stage breast cancers. Which is why many doctors don't use them. Do the research. Oh I forgot that you only choose research which suits your opinion. Also the ability to test for tumor markers was discovered by the medical profession..the same ones you attack. I'd respect your choices if you'd respect mine. -
I'm in the same boat. Seeing a surgeon Wednesday. I want to get of that operating table so fast and get started knocking this out. My sweet and crazy husband is telling me go for the double mastectomy. So I will push for a date very soon. If she said she could do it that same afternoon we would jump on it. Let me know how it goes. Also it may be helpful to start a journal with appointments , names, phone numbers, medications. Thoughts. Questions for your docs and keep dates, times and names of people you talk to. Make it a little easier and you can see trends or changes and when these happen -
I have clearance for surgery from my pcp now. I got all of my blood work back and X-rays done. MRI came in yesterday and the surgeon called and said that the MRI showed multiple smaller spots around the tumor that was biopsied that weren't picked up by the mammo or US! she said that the course will stay the same since I had already decided on the mastectomy. Thank goodness I chose mastectomy and comfortable with my decision! There is no doubt in my mind it was the right choice.... ecspecially now! I'm just waiting for the surgeons to coordinate their schedules and give me a surgery date. I asked if she had a rough idea of when it would be because they had already said it would be the week of the 11th or the week of the 13th. She said "well, it's hard to say with the holidays coming up". BAH, really??? Last time I checked cancer doesn't take time off from attacking me cause its a holiday lol. I didn't say that but I was thinking it! My breast is changing every couple of days, puckering more and changing in appearance. I hope to get it done ASAP! -
Hope all goes very, very well for you. I had my bmx in mid December 2009. Had the drains out by Christmas and went dancing New Years Eve. (very light dancing, probably shouldn't have, but I wanted to!)
I did not reconstruct, the surgery never hurt whatsoever. Needed NO pain meds. In fact I was concerned as to why it didn't hurt at all. No sentinel node biopsy so that may have made a difference.
Now here, 4 years later, everything is totally normal. No pain, no issues, no changes to movement, lifestyle, nothing! It is a blessing. ( look great in my clothes and have an awesome lingerie collection, much more than before....I need it
....and it works out great.)Hope it goes just the exact same for you!!! Take great care of yourself as you prepare for the day - don't fear, many have gone before you and it will be ok.
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My surgery is scheduled for November 19th. I am getting the bilateral mastectomy with immediate reconstruction following. I haven't ever had surgery before and I was wondering if I will have a catheter? I didn't even think about it until this morning but I am curious if any of you had to have one while in surgery. -
I had a catheter when I had my bilateral mastectomy. It was inserted when I was unconscious and I wasn't aware of it right away when I woke up. It did begin to irritate me after awhile, not really painful but mostly just in the way. My doctor didn't tell me she was going to insert one...I guess she assumed I would know that it's a common procedure. I still don't know that it is or it's only common for her. They do it, I was told, to make sure you don't pee all over yourself and to measure your urine output to see if the kidneys kick back in after surgery. Sometimes anestestia, just can't spell that one today, shuts everything down for a bit. After my surgery, my urine output on catheter was doing fine, they removed the catheter and nothing..not a drop. They had to reinsert the catheter..I was awake this time..it was uncomfortable but not extremely painful. Of course, I was still getting IV painkillers so that might of had an effect. Ask your surgeon to go over exactly the procedure/process he or she will be doing, it's completely okay for you to know and might help to relieve some fears you might have. I hope your surgery and recovery goes well. -
Unless one was put in and out while I was under anesthesia I didn't have one for thyroid or mastectomy surgeries in the last few months. I was up to the bathroom not that long after coming out of the recovery room. I have had many general anesthetics over the years and the only time I remember having a catheter was back in 1986. I wonder if hospitals or surgeons have their own protocol for this? -
wrenn, thank you for the link to the "In Defense of Sadness" article by Karen Ritchie on www.cancerlynx.com that you posted on this forum or another forum I visited this morning. I printed myself a copy. -
thank you again everyone!
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