Lumpectomy Lounge....let's talk!
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Today is my first day on this site. Already, I am feeling exhausted and depressed (totally unlike me, ordinarily) - there is so much "lingo" here and I am checking the abbreviations to no avail. What is "LX?" Breast cancer is a foreign world where one enters the Tower of Babel and does not speak the language. It is a strange situation where we probably walk among people in the same boat; however, there is no cast, no cane, no crutches - bandages are hidden, so we pass unnoticed and anonymous, isolated. Hmmmm - and that is why this lovely place landed on my doorstep.
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Octogirl, You might try using the old mouse. Could be better for your hand and they are interchangeable..
Vicks
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Welcome. BGardenia3. So glad you found us and sorry that you had to! You're right, it is difficult at first with all the shortcuts we use. First, Lx = lumpectomy. Dx = diagnosis. That ought to take care of that for awhile. I have a DH = Dear Husband and DS = Dear Son (2 in fact), DD = Dear Daughter, DIL = Dear Daughter-in-law, etc.
Have you had your surgery yet or is it scheduled? What is your treatment plan? If you can, update your profile to include proposed treatments (Tx) and dates, and any treatments you've had and make them public. That information is very helpful to us when we try to answer your questions.
Sometimes it is helpful to know your age. I'm 70. Still seems strange writing that.
We'll help you sort out all the confusion. It is depressing. Cancer is scary. Keep in mind that all the treatments you will have are done with the idea of getting rid of the BC (breast cancer) and KILL IT!!
You can see from my profile that I had a lumpectomy a year ago July with clear margins. 5 lymph nodes were removed and they were clear too. I had an oncotype test done to see if chemo was advisable. In my case, it was not necessary (though my MO - medical oncologist who handles chemo and any drugs you might take like Arimidex or Tamoxifen - thought I should have it, the tumor board said not necessary). I had 33 radiation treatments, 5 of which were "boosts" directed right at the area where the tumor was, rather than the whole breast and underarm area. And now since I'm post-menopausal (by decades!), I'm on generic Arimidex, an aromatase inhibitor, to prevent my ER+/PR+ cancer from coming back. If you're younger, then you will likely take Tamoxifen.
I was very lucky (and still am for that matter) that I had no problems (other than a mild infection at my Lx site) with any of my treatments. Most of us have few problems.
Let us know what we can do to support you and make this unwelcome journey less scary.
HUGS!!!
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Good luck Kayfry on your new journey!
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MidgieMoon, I'm so sorry that you are having awful reactions to your radiation. Hopefully the RO and his staff have you on products to make feel and look less awful. But so glad you are almost done! Then you will start healing and that should go fast. Slather on the Aquaphor or whatever you are to use to keep your girl and underarm moist. Wish I could be there to hug you - gently, of course. Hang on! You can do it!!!!
HUGS!!!
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Kay, please do visit us from time to time. I would love to hear how you and the family are doing. I know how nice it is to return to what our new "normal" is.
HUGS!!!
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Plumster, glad to hear that you will take it easy this weekend
rest and chill with your family. xoxokayfry, yes, the lounge has been a lifesaver---incredible support and wonderful company. Even for those who don't check in as often, I really appreciate hearing updates, news of different treatments, and knowing that the sisterhood has many, many caring members.
Midgie, wow, speaking of which, time flies! It's good to hear from you, and so glad that your boosts are almost over (but still not sure what a boost is, or why some have them weekly and others consolidate at the end tx., but that's a different post). Wishing speedy healing, so you'll be back in your wetsuit in no time.
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Hi Peggy - Thank you for your response. I have gone back into my profile and made a few things "public" - though I have no idea how to add my Oncotype, which is 19, nor the extra information you have under your name (such as age - 68, your daughter-in-law's quip, etc.) . I also work about 15-hour days, so it is difficult to devote proper time to learning this new language :-)
I have no idea what shows up, actually, but I have had a lumpectomy (July 10) with one poor margin - which they want to redo in the next few weeks. Sentinel lymph node was negative (great), though they want me to do radiation (I detest the entire idea) and I have already told them that I will NOT take Tamoxifen or Arimidex because reading the side effects takes what is left of my so-called mind too far into Stephen King territory. I am scheduled to meet with a reconstruction surgeon on August 26, because my doctors felt after the margin revision, I might want a little "help." What pushed me to this site is the radiologist telling me to get a small saline implant and then report for radiation. Two other rather major misinformation episodes have left me wondering about the medical community, in general. From everything I have read, saline implants and radiation do not go well together. This has led me to question everything they are telling me to do. So, I am feeling perplexed, uninformed and frustrated with all of this.
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Hi BGardenia and welcome to Breastcancer.org!
As you have already experienced, our Community is a wonderful resource for support, knowledge, advice and inspiration. You're sure to meet lots of amazing people here, ready to help you navigate this experience.
For some help with our "language" here, check out the Discussion Board Abbreviation Key.
By filling out your profile (link at top right corner of the page), signature and diagnostic information, your online account will become a complete picture of your breast cancer experience and will help others see what they may have in common with you. Additionally, you may receive articles that are tailor-fit to your situation.
We hope this helps and please don't hesitate if you have any questions at all! We look forward to hearing more from you.
--The Mods
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BGardenia3, I put the oncotype information and quote in my signature. 15 hours days are terrible.
One thing I would like to pose to you is your determination to not take Tamoxifen or Arimidex. Yes, they can have scary side effects (SEs) but MOST WOMEN DO NOT HAVE PROBLEMS!! The ladies who post most often on those boards do have problems and are looking for help. Those of us who do not have problems usually don't post. My priority through this journey has been to KILL CANCER and make sure it doesn't come back. Why else have surgery and radiation? And my Arimidex is part of this plan to keep cancer away. Do not assume you will have side effects. Give whichever anti-hormonal drug is appropriate for you a try. If the SEs are bad, then stop it or try another. Even women who have had bad SEs are glad they tried the drugs for the protection they gave even for just a little while. And most would continue taking them if they could. I have had no problems with Arimidex and I've been on it 10 months. Some of the ladies on the Arimidex thread went through 5 years with no problems. I have a close friend who has been taking it for 3 years again no problems. For me, I'll use everything in the breast cancer arsenal I can.
Radiation was no problem for me either. I turned a bit pink. Period. I used Aquaphor starting about halfway through my 33 rads. Again, I wanted all those stray cells that might be lurking around KILLED.
I'm sorry that you have to have a second surgery. Hopefully you'll have nice margins this time. Did your BS tell you that you had to have reconstruction with this surgery? Could you wait and have it done later? Some women wait to make the reconstructive decisions until after radiation and the breast has settled into its new normal. Usually there isn't a rush to do anything. That would give you time to read articles here about the various options for reconstruction and what might be best for you.
Try to take a deep breath and look at all your treatment options with an open mind. Read everything you can, especially the articles on this site. Talk with your MO, perhaps he can allay your fears about anti-hormonals. It is a very scary time for you and most of us feel that we have to decide and get everything done NOW!! Usually that isn't necessary. There's time to make informed decisions.
Keep asking your questions. We'll be glad to answer. And do make your profile as complete (and public) as possible. Sorry you have to be here.
HUGS!!!
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oh midgie my heart breaks for you. I will think of you this week often...I'm also a little frightened. I have 33 treatments starting late September. Are you using jeans cream? Someone recommended it to me and they sell it in my hospital
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bgardenia3....sorry you've had to join us but welcome. This whole BC journey (not sure what else to call it) is a mess. It's exhausting physically and emotionally. Esp if you're working 15 hours a day! Just want to share my experience. I had internal rads 2xday for 5 days. Can't believe I had this contraption inside me for 8 days but I managed and was so relieved when it was removed. The whole thing was just bizarre. I've been on Femara since completing rads and no problems so far. Best of luck and (((hugs)))
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Welcome Bgardenia, sorry you need to join us but you found a wonderful group and Peggy gives great information and hugs. I believe what your radiologist meant was to get a tissue expander and then get to radiation. Tissue expanders (TE'S) get filled slowly with saline to prepare your skin for implants and as a placeholder because rads can cause damage abd shrinkage to the skin. I am getting TE placed during my umx (unilateral mastectomy).
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Peggy, Molly, Nash - everyone, actually -
Thank you all for welcoming me so warmly. I will need to figure out why I feel so sad when I visit here. It has nothing to do with all of you, but more to do with my disbelief, I suspect. That I am not the sturdy, healthy woman in the mirror, is a harsh reality. Note to self: Import more positive thinking, as that is a wonderful way to live!
Your gentle messages about internal rads (must look that up as it sounds important) and alternatives to Tamoxifen, are encouraging. You are allowing me to almost laugh at myself (it feels good) to think that when I first arrived at the hospital to receive the results of my biopsy (which I already knew, of course), I let them know I would not have chemo, would have no radiation and no Tamoxifen! I announced, more to myself than anyone else, that I would have a double mastectomy and be done with it, as I was too busy to mess around with other treatments. They undoubtedly looked at me and thought - there, before us, stands another clueless patient who thinks she can just change the outcome because of her strong will. They were right. Snicker, snort - now I am laughing out loud. Did you all go through this stage? Did you feel like you were too busy to have an illness? Surrender is never easy.
Thank you for suggesting I reconsider taking some of these horrible-seeming drugs. Of course, you are correct - we read the horror stories of people who have had all their joints replaced, headaches, a gain of 100 pounds (I can't think of what else - but, all horrible). The people who have no issues tend not to speak up and I am most grateful that many of you are doing just that.
I tried to fix up my signature line to reveal more about my pathology report and I hope that helps.
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BGardenia3, Looks like you took that deep breath! Good! I'd guess most of us were totally clueless when we got our diagnosis. I figured I'd have a mastectomy and my surgeon said why? A lumpectomy will do the trick. I figured I'd have chemo. Again, the BS and RO said not needed. The MO thought I should even with an Oncotype of 13. I just went with the recommendations of my docs. Once you get over the initial shock and have started to think again rather than reacting blindly and lashing out at the unfairness of life, things improve. Sure you have to go through treatments but you realize they are all doable, even chemo. And the docs want the same thing you do: KILLING CANCER and becoming CANCER FREE!
I can't speak to what type of radiation might be prescribed for you. I had traditional of 33 rads, 5 of which were boosts. And no problems.
I was my DH's sole caregiver and had been for 4 years when I was diagnosed. He has Parkinson's and had had a major heart attack that messed with his memory. He could not get up from a chair, go to the bathroom, get in and out of bed without help. I had had no break in that time until my sons came to care for him when I had my Lx. The first uninterrupted night's sleep in 4 years! I was getting up 4-6 times a night with him. DH had a cancerous kidney removed in September (that went fine) but he got pneumonia in the hospital. It was touch and go for him. I was well into my radiation treatments which were right on the hospital campus. I'd go from the hospital to my rads and back everyday. I was beyond exhausted when I was diagnosed and remained that way. I'm sure radiation added to my fatigue but I didn't have time to worry about my BC, I was concentrating on DH and getting him better. He had to go to rehab when he left the hospital and I realized that I could no longer care for him at home. I placed him in a nursing home straight from rehab. It took me about 4 months to become merely tired. By that time, all my treatments, except Arimidex, were done. I never had time to worry about my BC. And when I did, there was no need to worry.
I don't know how you are managing working so many hours. That's crushing.
I'm glad you are willing to re-think your decision on aromatase inhibitors (BTW, pronounced aroma-taze) like Arimidex. That is what you would likely be prescribed since you are post-menopausal. No one is denying that SEs occur but most people don't get them or they are minor. I think that they are worth a try. If you're a bit more achy than you used to be, it could be the AI or it could be just getting older (Mother Nature does like to remind us that we aren't 20 anymore
). If you haven't read it yet, try to grab a copy of Dr Susan Love's "Breast Book." It's 5 years old and a new updated edition is due out next month, but most of the information in it is still valid and It gives you a frank look at BC and treatments. It's a huge book and I inhaled it in one weekend. Between that book and reading threads like this one, the one on radiation and on Arimidex, I felt well-armed to proceed with my treatments (when I had time to think while caring for DH - which wasn't very often, sadly). I read most of the threads from the beginning. I was well-prepared for my surgery and post-surgery. You already know that having completed one LX and know what to expect from the next one. I knew what to expect from radiation and what to use to protect my skin (just Aquaphor). I also knew that some women had problems with Arimidex and some didn't. I just wanted (and still want) to KILL CANCER. I know you do, too. I suggest you just bite the bullet and do what's necessary to do that. If you have side effects, your doctors will help you cope with them. Better that than having it come back IMHO.
Sorry to be so verbose so early in the morning. You'll do fine. You are much stronger than you realize. We oldsters are tough! (PS you did good updating your profile!)
HUGS!!!
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TresJolie,
I have been using cornstarch, aquaphor, and aloe. Once my skin took a bad turn, I added neosporin with pain relief, and a prescription steroid cream. All that worked great on my chest, not so much under my arm. My techs and RO feel so sorry for me, but, it is what it is.
I wouldn't assume that anyone else will react the same was as I did. My breast always get really tender and sore before my periods, so I wasn't that surprised my skin took a beating.
Pamper yourself, make friends with the techs, use whatever lotion they recommend. I haven't heard of Jeans Cream, I used whet the RO suggested. I did have to ask. (Ok beg) for a stronger steroid cream, though. You'll do fine!
Almost done!!! I bought my rad techs their gifts yesterday
~Midgie
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Midgiemoon, I am sorry rads has been tough for you but so glad it is almost over for you! Yay!
Your post was helpful, even if it didn't exactly ease my worry over rads. Thank you. My breasts have always been very tender and the bad one has really gone bad post-surgery. I mentioned in an earlier thread having some healing issues. The healing is now getting better where sutures were: but my bs had to prescribe special pads to cover the wound because the skin around the one still open wound area reacted horribly to the paper tape that held on a regular bandage. Then, the other day I put on a bra I hadn't worn yet since surgery, and something in the bra (it is lacy, may have been that?) caused an almost immediate rash that still hasn't fully gone away!
STILL waiting for the decision on whether chemo first and then rads, or just rads, but I do worry that rads will be particularly hard for me as it was for you. My RO says most of his patients do fine with just pure aloe, but I am going to keep in mind the other 'stuff' you mention if it starts to get bad. By the way, are you dark skinned? My RO said, and others on the Boards here have confirmed that dark skinned persons actually tend to have more skin problems on rads than light skinned persons, although they don't know why.
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Hi, ladies!
I'm currently undergoing chemo (round 6 of 12 taxol thus week! Yay!) and so far have seen significant tumor shrinkage after the AC and rounds of taxol. My tumor was quite large to start with: nearly 8 cm. Now it's down to 3.5. I am hoping for further shrinkage as I continue the taxol. Have any of you been able to have a lumpectomy after neoadjuvant therapy for a tumor of a similar size?
Thanks in advance!
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apologies if this has been mentioned earlier, but this thread from the breaking research news may be helpful on the topic of rads and side effects, etc:
http://www.breastcancer.org/research-news/benefits...
I am planning to copy and take it to discuss with my MO and RO as I may be a candidate? Not sure about the 7% plus or minus aspect but I would meet the criteria otherwise....(if I don't need chemo, keep your fingers crossed for me for a low score!)
Octogirl
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and welcome to HelplesslyHoping and BGardenia! HH, I wonder if any of the ladies of the Stage II Sisters thread would have experience with tumor shrinkage and lx? And Yay! that you are seeing good shrinkage!
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HelplesslyHoping, welcome! You are really responding well to your chemo - that's wonderful! I'm sure that some of the ladies here will be able to answer your questions. Keep making the good progress and stay positive (it sounds like you are). Hang on and remember you are KILLING CANCER!!!
HUGS!!!
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Hi again... long time no see.
I had a lumpectomy yesterday. Went in at 8 am for wire localization followed by surgery at about 10:30 and was home by 2:30. Doing well.. managing pain with ice and tylenol only. I had anti-nausea med during surgery in the IV bag and a patch behind my ear.
The main pain I have is throat pain, neck soreness and ab sorenss. I'm sure that's all from surgery process.
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Mizmimi, that throat pain bothered me as well. But, the good news was it was only a couple days. Sounds like you are doing all the right things. Heal well!0
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MizMimi, you did good! Sorry about your throat but I'm sure it will go away shortly. You might want to update your profile to reflect the surgery you did have and the treatments you anticipate.
I can understand why you are worried about rads but the ROs are very careful and it is a good way to kill any stray cancer cells. I did get confused with your signature why you aren't having an oncotype test done. Are you to have chemo?
Again, glad you're doing well and that the surgery is behind you!
HUGS!!!
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midgiemoon, sorry about your skin. I worry about rads too but what can you do when their job, as Peggy mentions, is to kill the cancer! Welcome helplesslyhoping. I am impressed with how well you are responding to chemo.
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mizmimi, so happy you are doing well.
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Octogirl,
I am as white as they come!!! I had heard the same thing about ladies with darker skin having problems, too. Just goes to show how unique and special we all are!
~mi
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Makes you wonder why one person has all sorts of trouble with radiation SEs and another doesn't. Another bafflement
I had a tiny bit of redness. I'm not real fair and I tan easily. Perhaps that makes a difference.0 -
Afternoon all - just checking in quickly to say hey! Celebrating my boyfriend's 50th birthday tonight at Fogo de Chao (sp?). Then tomorrow we're playing Bingo because I'm feeling lucky. My parents kept my daughter (she's 12) overnight and tomorrow so I could relax this weekend before surgery (which is Thursday). I bought some new pillows for propping me up, and a number of old 80's movies that I used to love and decided to splurge a little on so I have stuff to watch non-stop while I'm resting up after surgery. Plus, Target was having an awesome sale. LOL
Welcome to all of you that have joined over the last few days - I'm sorry you are here, but I'll tell you, they women here have been VERY welcoming, and have tons of advice. The only tidbit I have to give (having not yet gone through the surgery) is a bit of advice my mother gave me - she went through a lumpectomy, radiation and chemo 7 or 8 years ago - she said, after the lumpectomy, with regards to the soft bras - try to find front closure ones. She said that it's obviously possible to get them on if they close in the back, but it's easier if they hook in the front.
Good luck to the ladies on board for this week! Hugs, thoughts and good vibes to you all!!! And to all who have recently gone through surgery, I hope you are feeling better and healing up well.
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BJClaywell, good for you for having a fun weekend! Happy birthday to your BF! I'd add to your mother's advice by telling you to wear something that buttons down the front to your surgery. It makes everything so much easier. I even got pj's that buttoned down the front (which I haven't worn since either!). I'll be thinking of you Thursday! You'll feel me jumping around in your pocket
HUGS!!!
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