Lumpectomy Lounge....let's talk!
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Trudi, that story about Kim is horrifying. Imagine if she weren't alert and couldn't have turned down the patch. Very scary.
That's a very weighty article. Thank you for linking to it.
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Trudi, thanks for the link. This is really interesting stuff! The idea that cancer cells might mutate and develop resistance to the drugs we throw at them makes perfect sense to me, non-scientist that I am.
I agree that we have to be vigilant and our own advocates, because who else is gonna do it? I can read and I can research—may not be a scientist or a doctor, but as a writer I have pretty well-developed research skills. I was just kind of taken aback that such imprecision would be apparent even at a top medical institution, and with a top-notch breast surgeon—it is and he is, and I feel very lucky to be getting treatment there, but still . . . read your own reports, guys! I don't want to be given recommendations based on generalities, but rather based on my own particular situation, which I think ought to be kind of basic and obvious. End of rant
Your friend's daughter's story is pretty appalling but I guess it happens. I'm a very hands-on person, with my own care or my family's or the veterinary care for my animals, and it's even hard for me to cut through all this sometimes—even with a husband who's a doctor in my corner. I can imagine how hard it must be for people who either can't or don't want to stay on top of every little detail. I have not heard back from my BS on the tamoxifen thing yet, by the way, but I'm sure I will eventually. I may send another email in a day or two if I don't. In the meantime, I did schedule a consultation with a PS today, just for general information about options that may be available to me down the line if I decide I don't want to live with my lumpy breast in its new form forever. I felt SO much better, just having made the appointment—for me it's all about knowing my options, gathering info. I feel quite certain I don't want a major reconstruction with implants or flaps or anything like that. No major surgery or lengthy recuperation. My reconstruction goals, if I get to that point, would be extremely modest, but it just makes me feel better to know I do have options. One more medical appointment for this month, but one that I feel will be helpful for my peace of mind as I go through this whole process; PS happens to be the only women of the 4 in the Hopkins group, but I chose her because she's the only one who sees patients at the northern outpost where I'm doing most of my treatment because it's an easier commute. But I feel good about this doctor, and even had a good feeling after talking with the very nice woman who scheduled me, emailed me an informative brochure, etc. Haven't cancelled the medical oncology appointment yet and will be sure to discuss all this tamoxifen stuff if it looks as if I'm actually going down that road. Still can't see why I would be, though.
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So I had the mammogram and an ultrasound. What it turned out to be was a seroma at my surgical site that had managed to create or take over a track from it to my nipple. The discharge is the fluid from the cyst. The radiologist drained about 12 cc of fluid from it sent it to the lab to be cultured for signs of any infection. The fluid was clear though which he said was a good sign. He said I probably have had this for a while but I didn't pay it any attention because I thought it was just side effects from radiation.
I feel much better knowing it wasn't anything serious and hope the pain lessens now that he drained it.
Thanks for your thoughts and prayers!
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What a relief, Jeanelle! Now you can breathe. Bet your poor girl feels a lot better, too! Whew! HUGS!!
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Kay--Glad to add the article to your research files. For us, it was reinforcement (after the fact) of my/our decision last year to decline hormonal treatment in light of my age and stage1/grade1/no node status--truly early stage, regardless of HR/PR positivity in favor of weight loss and reducing sugars and fats in my diet to less than they were before b.c. (Exercise is a non-issue, since I have always done it and did it all through treatment, in fact).
You and I seem to have a lot in common (except our diagnoses)--especially our unwillingness to sit back and "leave the driving" entirely to the doctors. (And our writing long posts.) At my first appointment with my MO, when I handed her a list of questions and also citations from articles questioning hormonal therapy, she remembered my med. history form, "Oh, yes, you are a retired professor." Yup--doing research is a fact of life for me and for my husband, who was a prof of biomolecular engineering for 40 years. She even seemed to enjoy the give and take of our discussion, and never dealt in "sound bites" or a canned lecture, which was refreshing. I did end up declining hormonal therapy, with her blessing, and have since recommended her to another friend my age, equally feisty and verbal about involvement in the decision-making process.
My friend's daughter Kim, likewise, is feisty and luckily won't let anyone force her to accept something blindly,. She has lots of experience in standing up for her autistic son's right to mainstream education. When she and her husband left VA for a different job, it turned out that they went to a state where IEP's are non-existent and where all "different" (the local word there) kids are taught together in one basement classroom. She went into high gear to bring the school district out of the 18th century and into the 21st and had a modicum of success--her son is the only mainstreamed student with an aide in a regular classroom (as previously, in VA); the others, sadly, are still in the basement. So an ignorant and/or careless nurse certainly didn't have a chance against Kimmy about HRT! Nor did the PS who wanted to give that always-flat-chested young woman new boobs fit for Dolly Parton (claiming they don't come in smaller sizes)--she walked away from him too.
Good luck with your rads--they really are no big deal, especially if you are fit and keep exercising throughout. The commute" is tedious, but several weeks (even 7, in my case) really don't add up to a long time in the big scheme of things. Those weeks, however, buy you time to do plenty of research and to process it and come to a decision you are happy with.
Best, Trudi
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I'm glad you got good news, Janelle. What a relief, hmm? Thanks so much for letting us know. I hope it all clears up quickly!
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Topic: vaginal atrophy-dryness/thinning skin/bleeding/pain due to BC cancer treatments (rads and/or chemo)
This was a topic in my lumpectomy group class recently, we didn't have a lot of success stories to share, per the ladies who have had things suggested, so I thought I would post it here for discussion and recommendations. BC treatment side effects, as a result of rads or chemo or both; or after other treatments. I know it's a personal subject, but more difficult to discuss face to face; perhaps more comfortable to discuss on a blog.
Diagnosis of vaginal atrophy is often a challenge because women are unwilling to report symptoms, which have the potential to significantly decrease their quality of life. Increased clinical suspicion is the first step in the diagnosis of vaginal atrophy, which will prompt the initiation of safe therapies with proven efficacy.
Prescription for vaginal dryness, Estrace cream, contains estrogen, vaginal application only, has known cancer causing properties and is not recommended for use by cancer patients. This prescription may/may not be covered by insurance, runs about $150> per 1 1/2 oz tube and has no generic. Some women have reported OBGYNs are still prescribing this to women dx w/ BC so they can endure their pap test.
Vaginal dehydroepiandrosterone (DHEA), vaginal testosterone, and tissue selective estrogen complexes are new, emerging therapies; however more clinical studies are necessary to confirm their efficacy and safety in the treatment of postmenopausal vulvovaginal atrophy.
A more natural method and in clinical studies has been/is being tested, DHEA Bioadhesive Vaginal Gel, by prescription, not covered by insurance (not all the ingredients are FDA assigned, yet). Not all pharmacies carry this product. Is referred by your BC onc for approved pharmacies in your area or by mail order.
http://www.breastcancer.org/treatment/side_effects/vaginal_dry
https://clinicaltrials.gov/ct2/show/NCT00343382
http://www.nlm.nih.gov/medlineplus/druginfo/natural/331.html
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This is really good news, jeanelle. Sorry you have to have this complication, but so glad you found out what it is and are getting the right treatment. Feel better!
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Pegg, Bookwoman, Kayfry,
Going back a few posts. I have ILC and I will be prescribed Tamoxifen after my radiation-starts the 10. I am 85%/90% ER/PR+. I read that Tamoxifen is prescribed for pre-menopausal women an AI for post.
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MM68, that's usually how the drugs are prescribed. Of course, as we know, nothing is cast in iron for BC, so there are many exceptions. You'll do well with the rads. HUGS!
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Thanks, Trudi. Yes, we share a tendency to write long posts (my writing friends will tell you I write everything long), and in being motivated to take a really proactive role in our own treatments. I love the idea of your showing up at your first meeting with MO with lists of questions and article citations
That would be me, and even if it weren't, my husband would be standing right behind me with his own long list of article citations. From your description, I know I would love Kim. And thank you for the reassurance on rads. I'm not sure why I've been so anxious about it, but I'm sure you're right. I'm going to try really hard to combat any fatigue with exercise, as good a fitness level as I can manage (I do try), and more attention to my diet (thanks for the reminder). I do try to do all of those things normally, but even more important now. 0 -
I always have lists of questions at each doctor visit. Started that 46 years ago when I was pregnant with my first son. It ensured that my doctor would stop for a few minutes. He gently teased me about it but always asked if I had more questions. So plenty of practice
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Jeannelle--good news in the form of treatment for a relatively minor condition AND peace of mind!
Peggy--just checking in: how's the yoga dvd working out for you? Hawaii should be nice at this time of year in your Michigan home, and the poses relaxing, Trudi
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Trudi, only have done it once. Got waylaid with all our snow. Working with a teacher tomorrow and looking forward to that. Thanks for asking!
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http://www.medicalnewstoday.com/articles/271779.php
Article about the benefit of yoga for BC patients. Looks like we all need to try I guess
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Hello, all. Hope I'm doing this right. Last I heard I will probably be having a lumpectomy of the left breast at which time the surgeon will also be checking the lymph nodes (having an MRI this week and an appt. w/ surgeon the following week). My question is not the most important one I should be asking but I still would like to know your opinion.
I have had short hair for many years and recently, prior to all the drama of discovering the lump, I began letting it grow all one length. It's still short but requires daily washing and about a half hour of blow drying with the various brushes before I can go out of the house. Just having to spend so much time on my hair with my arms raised as taken some getting used to, but I started wondering how the lumpectomy would affect my ability to do this. If it's going to be painful for, let's say a week or more, I'd just as soon get a haircut prior to surgery so I can just fluff it up with the hairdryer using my right hand.
Thanks for any tips.
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SurprisedAt65, Welcome. I think you will probably be happier having a hair style that doesn't require having your left arm raised for long periods of time. The SLNB is extremely annoying, sometimes painful. So if you can do wash and wear for your hair, I'd do it. And all questions are important - because they matter to YOU. We can't necessarily answer the big questions but we sure can help with the more mundane, daily living ones.
BTW, it is very helpful for all of us in our replies to you, if you make your diagnosis and other pertinent information public. HUGS!!!
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Surprisedat65--No need to apologize for asking any question--as I used to tell my students, "The only silly question is the one that you don't ask." So keep asking! But also remember that in the b.c. arena, all answers will be different too, since all cases are.
Peggy is right about the discomfort from the sent. node incision site, because of its location, the the status of your left arm will depend largely on how many nodes the surgeon removes. She had 5 nodes taken out, so she experienced more discomfort and for a longer time than I did, with only one node removed, while a 75-year-old friend of mine who had 16 nodes taken, and had post-op drains just scheduled appointments with her salon for a while. I recall washing my short hair 48 hours after surgery, when I was allowed to take my first post-op shower--true, it wasn't a long, drawn out shampoo, but I could do it without pain.
Your discharge papers after surgery will give you instructions about how the surgeon wants you to use your arm (range of motion, type of motion, amount of weight to lift with it)--those are your ultimate guide. And if you don't get them, ask for them! Unfortunately, neither you nor the surgeon will know for sure how many nodes will be taken until you are anesthetized, so I agree with Peggy that the old short hair style with no blow-drying would be your best bet. . Trudi
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Trudi, I actually had very little pain from my SLNB. I also washed my hair a couple days after surgery and had no difficulty walking my arm up the shower wall. I put rollers in my hair and that wasn't too bad. Mostly I had "ouch" moments when something would rub the spot wrong or I'd move in some interesting way that the underarm didn't want me to do. Two of my nodes were "hangers-on" and the surgeon was surprised to find I think. Everyone is different. HUGS!
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surprised at65....I have really long thick hair that takes forever to dry. So I opted to go to the salon every week for the first month or so. I kinda got used to it so I just kept going. We have a place in town that's called Blowout. That's all they do is wash and dry. My hair takes someone a full hour to do. I only had one node removed and it was "uncomfortable" more than painful and I was "lazy" more than anything else....so I just treated myself.
With all that said....if you liked your shorter style it will make life easier.
p.s. welcome to the lounge!
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Guess I'll be taking you'all's advice and plan on getting my hair cut. In truth it will be a relief to have short, no fuss hair again.
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Surprise, I happen to like my hair long and one length too. It is much easier to handle. Even if I don't style it (think ponytail). But obviously you have found the right "do" - And I think you should treat yourself to salon trips if you can! HUGS. (And thanks for posting your info).
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Hi all, just checking in. Had my re-excision on 1/29. It's made my armpit pain flare up again. I guess this is normal? I got my Oncotype score back. It's a 15. Still waiting to find out about chemo.
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shelley, so glad you have that re-excision behind you! Hoping you get all good news to follow. I'm sure some ladies who've bee through here will know more about the armpit pain, but I hope it's brief!
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The poor armpits cause all the grief, don't they, Shelley? Sorry to hear yours is acting up. Hopefully chemo is not on the horizon. But if it must be, you'll manage. Did your nodes come back clear? HUGS!!!
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Hi, everyone. I finally just got the answer I was waiting for from my BS (he says he emailed me on Monday, but I never got that email and he can't find it, so maybe he only thinks he did?) Anyway, he says that with my ER 1% and PR 0%, that no, I "don't need to mess with medical oncology," in his words. I don't know why the confusion regarding my marker numbers (he still has the wrong ER percentage from my core biopsy, which was 5%, not 10% as he is now saying, but he is basing his new recommendation on markers from excision pathology). Anyway, I'm relieved to know that tamoxifen is definitely off the table for me. I had definitely worked it out in my own mind that any benefit would be far outweighed by risks in my case, but had BS really thought I should pursue it with MO, I would have gone to that appointment. Now I get to cancel it and just worry about my rads simulation on the 16th. Among other things . . .
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That's good news, Kay. Don't worry about the rads. You'll sail through! HUGS!!
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Thanks, Peggy! I'm counting on it
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Surprised, I totally relate to your question! I have long, thick hair and it takes some serious management. I had my daughter help me wash and dry/style it several times, and a couple of times I went to my hair-stylist. She was so happy to help she wouldn't even charge me. I think it was about two weeks before I felt comfortable doing it myself. My husband washed it once. That should be a movie some day. I only had two lymph nodes removed, but I got that "zingy" numbness. It's gone now (7 weeks out).
It goes by so quickly, I'm not sure I'd be willing to change my long-term plans for my hair. Although it was a big deal to me for a while! Do you have to go to work?
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Kay--Great news! Welcome to the "no tamoxifen club." Now just relax, and think about fun things until the 16th and put rads and rads simulation out of your mind for a while. Ride that horse, take long walks (weather permitting, of course, for both), write a chapter--do whatever else gives you pleasure. You'll do fine with rads! Trudi
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