Stage II Forum
Comments
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Hi there my first posting here. I was just wondering if any of you are as paranoid as me about reoccurance or finding cancer in other parts of our bodies. The fact that my largest tumor was in my lymphnodes not the breast scares the crap out of me.
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Of course many of us worry about recurrence. Every once in a while when I think I am just being a hypochondriac, I get a test done and it turns out something is wrong. Right now I am being tracked for low thyroid. Before that I was having trouble getting my Vitamin D where it should be. Just because I'm paranoid doesn't mean I'm wrong.
Keep on top of things and try not to have your concerns take over your life.
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mumayan--I think we all worry about recurrence/mets to some degree or another. I remember going through a time when every twinge, every ache, every little thing I felt that was different brought with it fear of mets/recurrence. Over time that has faded, not gone, but much less intense. It does get better after a while
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Hi Paula1231: I see you are from Albuquerque. I was married there and my husband's family still all lives there except us. I'm a Paula too! I will keep good thoughts for a low score so you might get to do meds like I am (Tamoxifen).
Hi grannydukes: good to have you here...sorry you have to be here though.
ECT (Caroly) you are talking about switching from Tamoxifen to an AI (aromitase inhibitor) i.e,. Femera. I know there are some studies that for some women it can be helpful to switch to one after a few years on Tamox depending on your age and health. They all have SE and we all react a little differently to everything though. I don't know if you've seen the great chart on this site comparing them all. It is here:
http://www.breastcancer.org/treatment/hormonal/comp_chart.jsp
It is very handy.
Maine: I agree, I was terrified of my first mamo and was a nervous wreck until I got the "all ok" report. I couldn't even wait to get it in the mail and called my breast nurse navigator to get it on the phone. I still worry about it coming back at some point, especially since I am a uni with dense tissues. I can't help but worry there is something hiding in the other side waiting to get me at some point.
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Colorado, I went through the mammogram horror every year after my diagnosis. Every year they took me back for more films and I was terrified. I even passed out once when the tech came to call me back. I used to have my BS arranged my mammograms and a follow up appointment the same day. I would carry the films to her office and I would get the results the same day from her (the radiologist would read them and call the report to the BS). You might want to try that approach to minimize the waiting for results. That yearly horror was one reason I had the right breast removed when I had reconstruction this summer. No more mammos EVER! YEAH! My BS said the anxiety about the mammos got better over time but it didn't for me. Everyone is different, of course, and you may get used to it, the first one is always the hardest. I hear you about the fear of something hiding in the remaining breast. Not a comfortable thought.
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bcincolorado - Thx for the information - the site. Going to check it out now.
Carolyn
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Hopping here from stage1 group to say Hello.
Hugs
Sheila♥
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Hi Shiela! Hope you have a wonderful day.
NativeMaine, thanks for the suggestion. My onco ordered my last mamo. It was time. Now I need to go do the other check-up for gyn.....not looking forward to that one either!
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Oh crap A gyno exam I haven't been there in ages now I better book a checkup.I was told if you are on tamox you should come in more frequently.
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I know my onco said some gyn docs will want to do a biopsy automatically and he doesn't think that is necesary. He suggested an ultrasound of the uterus first and then only if that showed a problem do a biopsy. I used to get mine at the internists office by the NP but now need to find a real gyn. Still trying to decide.
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good morning sistas
im posting this everywhere.i need an answer by the end of the day.im having nodes removed on sept 20th.dont know how many but i dont want the drain afterwards. i read on one of these threads that some drs dont do it but you have to insist on it.does anyone know why they dont want to do it.when i spoke to the nurse about it she said.its gonna be a mess if you dont have the drains,then why do some drs NOT so it.im confused i just want to do the right thing after seeing 3 drs and the 3rd.surgery.dr.is calling tonight...help
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Fluid buildup is a common problem with this kind of surgery.The drains make sense to me.
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Speaking from experience, the drains are MUCH better than going into the office every day or two to have needles stuck in there to drain the fluid. And the pain the collected fluid causes is excruciating, but only until it gets infected, then it is totally unbearable. Putting up with the drain is much better than dealing with an incision that opens up or does not heal because the fluid is draining through the stitches. Full healing WITH a drain, a few weeks, WITHOUT the drain, could be months.
A few docs don't use drains thinking that the body will create less drainage if the fluid collects instead of being carried away by a drain. This may be true, but as a nurse I do know that people without drains have MUCH more pain. You can go back to work with a drain, you may not be able to go back to work on narcotic pain medication. But if you have a high pain tolerance, it may work for you.
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Couldn't not having a drain to help with the fluid raise the risk of getting lymphedema since some lymph nodes have been removed?
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I was skeptical about creating yet another thread and balkanazing this site, but I am, after all, happy to see a stage II thread after a long, much needed absence.
Grannydukes, I am not knowledgeable enough to advise you on the pros and cons of having drains, but after going through a double mastectomy wrapped up by my bs and later reconstruction, wrapped up by my ps, I can say that for me, drains were much more tolerable when I was tightly wrapped up (as by my bs). It killed me and made me want to pull them out when they were loose and grated against my open sores whenever I made the wrong move, which was often, as in every time I tossed and turned in bed. So whatever you do, make sure they don't bandage too loosely around there. My ps was always loose. Too much tightness increases the risk of infection but frequent changing of bandages can help, and they do give you prophylactic antibiotics (which I suggest you take - this is from someone who hates taking meds unless they are absolutely necessary).
For reasons too weird to go into here, I have experienced both - having drains and not having them, and I did get a seroma in one breast from the lack of drains, so I would opt for the little buggers if it were me. Good luck!
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I can add that it seems drains are the "norm" for most surgeries now. My DH had 3 in his abdomen after his transplant. Drains aren't fun of course but they sure beat needles and endless doc visits.
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hello my sistas
spoket to the dr.yesterday...Good lord you girls are always right.its drains for me.she said it was my choice but why would i want to come in to her office practically everyday(without a car) 35 min.away when she assured the drains were the way to go.
thank you all of you for your input.God bless
K
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granny: I know those drains are a pain...not to mention really disgusting if you ask me...but they hopefully won't be in too long. I know after my DH transplant and we saw all that disgusting stuff coming out (I had to ask what it was since it freaked me out) we decided never to eat vinigrette ever again since it looked like that!
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Granny: I am wondering, is this the same kind of drain they put in when they do lumpectomy? I had a drain for about 7 days, the third time, my God, it was kind of painful and irritating. For each surgery, I had to have a drain, most uncomfortable. I could not shower. There was a bulb at the end which I had to empty twice a day. I had blood coming out, in the beginning it was dark red, later became very watery. I think the drains are a good thing, otherwise one could have an infection as blood and surgery stuff will collect and become infected. Let me know how you are doing now and what kind of drain do you have.
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Lovelyface it would be the same type of drain. I had a lumpectomy and nodes removed at the same surgery (I already knew from a fine needle biopsy one node contained cancer). I had one drain, it was positioned under my arm at the bottom of the incision where the nodes were taken, so it didn't get in the way too much. It was inconvenient not being able to shower for sure, especially considering mine kept draining for a bit over three weeks. I had a seroma on the breast where I had lumpectomy so that might have been the reason.
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Hello everyone! This is my first post here in the stage II forum, but not my first on bc.org.... So thankful to have a place to come to where everyone knows pretty much exactly what I'm going through
. I'm having a BMX on 9/14, then following with chemo after that. I am holding off on reconstruction until after all treatment is complete because doing it now would delay starting chemo much too long for my liking due to healing time for recon. I think about everyone on here daily and pray for strength and quick healing for all!Much love and support! XOXOXO
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Shower with a drain (it's called a Jackson-Pratt drain) is indivdual to each surgeon. My BS would not let me shower with a drain in (not fun for 4 weeks in August and September). My PS let me shower with 4 drains in, and actually encouraged a daily shower. Both surgeons had the same reason for their instructions--risk of infection. My BS felt showering and getting the drain site wet increased the risk of infection, my PS felt that showering and running soapy water over the drain sites (and incisions) decreased the risk of infection. Where the drains come thorugh the skin is a painful/uncomfortable place, and the more the drain moves the more it irritates and hurts. That's where firm dressings help. Bit of a challange since my PS prefered to leave the sites open to air unless there was drainage from the site, but I had to resort to dressings and tape to hold them stable and decrease the pain.
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oh girls..what is the answer..again 6 of one and a half a dozen of the other.shower or not.wrap or not.if i dont shower 1 day i stink.i never had that before.im wondering if it has to do with the removal of the sentinel node.boy these nodes are one huge pain in the ass.EVERYTHING ABOUT Bbc IS A PAIN IN THE ASS.
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Jalsmama: Welcome. Sorry you are part of the club, but welcome here!
I think using drains for lumpectomy is also a preference thing too since I had two of them with no drains and didn't have any until the mx. Yes, it sure is crazy about how one says shower and someone else says don't shower. It is crazy. Gave me a good reason to not do much though since I was a no shower person. I sure couldn't go to work or go anywhere. I didn't feel like it anyway and had a good excuse to rest.
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grannydukes--you got it!
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Hi Ladies. My name is Kathy and I was diagnosed on July 22. First lumpectomy (my BS calls it a partial mastectomy) on August 18, with re-excision on September 1 with clear margins this time. The 2nd surgery was much easier than the first and I think having a drain really helped--much less swelling and soreness, granny dukes. Last week was major appointment week with BS on Tuesday, rad oncologist Wednesday, and med oncologist Thursday and I'm just overwhelmed at all the information I must absorb. In addition to the fact that I have breast cancer, which is enough to absorb as it is!! Got a dental appointment soon and have visions of sitting down in the chair and immediately ripping my shirt off, I'm so used to doing it now!
Everyone has said no chemo, except the medical oncologist. I'll get this info in my profile soon, but the tumor was ILC 2.5 cm, clear nodes (0/3), ER+, PR+, and HER2/neu "not amplified" (not sure what the last means. Anyone know?) I'm awaiting the results of the oncotype test now so that will influence my decision, but I'm praying for a low score to make the decision easier.
The main reason I don't want chemotherapy is my sister. She had BC a couple of years ago, had mastectomy with no problems, and then had one chemo treatment (TAC) and a week later was in the hospital near death. She remained hospitalized for about 5 months, during which time various complications led to her leg being amputated. (Long story, but I think more related to some issues with her treatment with lack on oxygen in her legs that caused this). Truly, my sister has a long history of drug allergies and that may also have contributed, but the result was the loss of her leg, and half of the other foot as well. So, chemo terrifies me with good reason. She's doing quite well now and adjusting to her prostheses.
Of course, I've told all my doctors about my sister and they all say they've never heard of such a thing. Well, I hadn't either; nobody has, but that's what happened and that's why I'm so scared. The onc says she had a very aggressive treatment and I would be on TC, not TAC, but I just don't know. It's all I think about now.
My husband and children (DD age 28 and DS age 24) have been wonderful and I could not ask for more support. My friends also have rallied and I cannot believe the number of women at church who've shared their own BC stories with me, some I knew about and some I did not. The radiologist who did my original biopsy suggested this site to me and I've been lurking here since I was diagnosed, reading almost everything here. I already feel like I know many of you and I thank you all so very much for being here to share and to help. I'm so sorry we all have to be here, though.
Kathy
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Welcome Kathy,
I'm glad you're here, but sorry you had to join the group that no one wants to be in. I'm so sorry to hear about the trials your sister went through. I"m praying for a low oncotype score for you. I also know the plethora of medical appointments can be daunting. It's wonderful that you have your husband, children and friends to help you. Did someone go with you to your appointments? It helped me so much that my DH went along and paid attention when my brain could no longer absorb anything. In the 8 months since my dx, he has been a constant support for me and I thank God every day for him. You will get through this Kathy. Remember you are not your sister. Her situation seems very unusual. Chemotherapy - if you need it, is there to kill any wayward cells that might be lurking elsewhere in your body. It is doable, but having been through it I know that it is frightening before you begin the treatment. I was also terrified of radiation, but it was much easier than I expected and I had 36 treatments.
The fact that your tumor was ER+/PR+ is good in that you have another tool in your arsenal to fight with. Aromitase inhibitors work by blocking the smaller amounts of estrogen that are created in other glands in your body from binding to cancer cells and feeding them. The Her2 negative status is also good as tumors that do not have amplified Her2 typically are less aggressive. Her2 is a gene that sends control signals to your cells telling them to grow, divide and make repairs. If you were Her2 positive, it means that your cells are over producing.
Keep us posted on your progress and know that we are here to help and encourage you. We've all been there, and I know it helped me a great deal to have the ladies on this site for support.
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welcome cathy....this is the crappy club BUT it has the best people with the best advice you can ever get.we are on call 24/7.we laugh with you,cry with you and always pray with and for you.
we are your sista in every way.God bless
hugggggggggggggggggs
K
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(((hugs to all the newcommers))) Any questions about dealing with treatments.Ask away.
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Thanks Rocket, granny dukes and mumayan for your replies. I'm trying to hang in there and keep it together, just one day at a time. Rocket, my husband and I keep our 1 year old grandson full time while his parents work, so my husband didn't go with me to last week's round of appts, but he's been to everything else. He's also reading all he can about BC, and I'm sure my daughter and daughter-in-law are as well. Two days after I was diagnosed initially, we all went on a long-planned beach vacation and I tried to be as normal as possible, although at night I did spend a lot of time watching the ocean, thinking and of course crying. My DIL's mother went with us and she's a 10 year BC survivor! So, she helped me a lot, and still does by sending very supportive e-mails.
I retired 2 years ago after some 33 years as a state food stamp program analyst, primarily bacause I needed to look after my father. He finally had to go to a nursing home and passed away this past winter at the age of 93. Not many people age 93 have an older sister, but he did (!) and my aunt is 98. She's in a nursing home also in another city and I visit her once a week. So, between keeping our grandson and looking after my aunt, I stay pretty busy, which is good I suppose.
My daughter and DIL are running soon in a 5K for the Susan G. Komen Foundation, and for that I am profoundly grateful, honored, and very proud.
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