Lumpectomy Lounge....let's talk!
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it would be a breeze without the dern SLNB! I'm really trying not to think too much about Tuesday. It scares me to death.
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Well, all I have so far are the results of my stereotactic biopsy, prior to lumpectomy. In that, my lesions are identified as ER- and PR-weak positive. Nothing mentioned there in the pathology report, of which I have a copy, about HER2. Maybe this will change with the results I'm now waiting for, from my surgery. So far, I was only told that being ER- and only weak+ for PR, that I'm not really a candidate for tamoxifen (and maybe also because I'm post-menopausal, my body isn't likely putting out that much estrogen anyway). Is every DCIS usually evaluated for HER2? Well, everything could change by Monday or Tuesday, which is not making staying calm very easy . . .
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I'm sure it does, Shelley. There's a sense of facing one's sentence about it, isn't there? I hope yours is light. Hang in there.0
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Thanks jeanelle, it helps me to know what others have. Now I just have to wait until Wednesday. What sort of work do you do? This cancer certainly makes us look at all aspects of our lives.
I've always wanted to back pack around the world. But it means selling my property and quitting my job. So now I have to work out how important my dreams are and make a decision.
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Hi All -
I know I haven't been on much during the last 4 weeks or so, there hasn't been much going on, which is fine with me. I did have one question though. Have others ever experienced a period of itchiness on the lumpy side. Not itchy in terms of a dermatitis or anything like that. Just curious? This week I see all my cancer doctors for the first time since the radiation was completed. Are those visits fairly straightfoward?
MarieBernice6234
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KayFry, I think they usually do test for HER2 but that result comes in at a different time. I'm definitely post-menopausal and was put on Anastrozole (Arimidex) but I'm definitely ER+/PR+/HER2-.
Shelley, that SNLB is a royal pain. But eventually all will be well!
Shaz, what an adventuresome soul you are! And, yes, cancer does make us take a good look at our priorities.
HUGS!!
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hi Marie,
I've only just had my surgery and I'm not itchy on that side but my nipple on the good side is itchy. Is this something I should be worried about? How's the rads been for you?
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MarieBernice, YES! Just an annoying itchiness. Not all the time, just occasionally. I had it on my chest (not really on my breast). I wonder if it is from the radiation. I think sunburns can make you itchy as you heal (never had one so don't know).
Most of your onc visits should be straightforward. Your BS/SO may give you a script for your first mammogram (usually for 6 months post-radiation). Your RO wants to see how you're doing and if you have any skin issues. Your MO will likely prescribe tamoxifen or an AI (and perhaps something like fosamax to go with it for your bones). If you haven't had a bone density test, you might also have one.
So , they shouldn't be scary appointments.
HUGS!
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Shaz, I found the rads easy. I had virtually no issues.
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HI PontiacPeggy-
Thanks for the feedback. i already had my first bone density scan as part of the workup before the lumpy. I can see how taking something like Fosamax would make sense. Is that what happened to you? Do you see the medical oncologist for a followup at least shortly after starting the Tamoxifen to monitor progress?
MarieBernice6234
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MarieBernice, I started my Anastrozole and within 2 weeks, Fosamax (always a good thing to keep the bones strong and AIs are hard on the bones; Tamoxifen is rather good for them, I think). I'm too old for Tamoxifen. I saw the MO 2 weeks after starting my AI . I see him again in early February. I don't know if I'll be seeing him every 3 months or longer. I did ask my MO if there is any way to actually measure if the AI is working and, aside from not having the cancer come back, there isn't. So I would guess we are primarily watching for SEs.
I think after this month's visit to the RO it will be 6 months before I see him again. I'll see my BS in April after I have my first post-surgery mammogram.
HUGS!
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did you start before or after radiation?
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Shelley, I started my Anastrozole the day after my last radiation treatment. I saw the MO the day I started radiation and he gave me my Oncotype score and prescription at that time. My radiation started about 6 weeks after my Lx.
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How long do they normally wait after surgery to start radiation?
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Shaz, for me it was 6 weeks. They want you to be pretty well healed.
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Shaz, I was told 3-4 weeks after surgery for simulation, then 1-2 weeks after that for first actual rad treatment. All of that is assuming there's no chemo.0
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Thank you both. That makes sense. I never know what to ask at my appointments until after!
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One of my favorite questions to ask is "What number do I call if I have more questions once I get home?"
Remember, they work for you!
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Thats a very good question. I feel like I've fallen between the gaps due to Xmas and new year. The beast nurse said that she would come and see me before I left hospital but she didn't.
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Shaz, you might want to read Dr Love's Breast Book. It is the most comprehensive, informative book out there. While it came out in 2010, it is still very relevant. Dr Love pulls no punches and gives you answers to most any question you might have. It's a big book but I sat down and read it cover to cover in a weekend. Then I would go back and refer to specific parts of the book. Aussie Kindle Edition
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shaz - I work as a Project Manager and manage software design projects for the company i work for. I enjoy what I do but it is very stressful at times and if things aren't on time, I'm the one that is blamed even if the entire situation is out of my control. Before the cancer, I had much more patience with people and let things just roll off my back. These days I just want to slap the crap out of these people. I'm exploring other opportunities. What I would really love to do is be a 50's housewife and stay at home but that that is out of the question. Got to have 2 incomes these days to live. I'm looking into working at home which would be sort of the best of both worlds. Like Peggy, I started radiation 6 weeks after my lumpy. They want to give you enough time to heal. The radiation was tiring and I had some nasty skin issues, but looking back, it wasn't anything I couldn't get through.
MarieBernice - I also had some itchiness after the radiation. I am now almost 7 weeks post-radiation and my nipple is still peeling and sore. Seems like no amount of lotion will stop it. As Peggy said, the first round of doctor appts. after the end of radiation really were nothing. RO looks at your breast and see how you are doing. Mine then scheduled a follow-up for 4 months later. I had my appt with my MO before radiation ended where she prescribed me tamoxifen so this appt. was to see what if any side effects I was having and to go over with what I needed to do going forward in terms of diet, exercise and losing weight (yeah like that is going happen). My BS turned over my care to my MO right after my 2 week follow-up with him so I didn't need to see him again. My MO will schedule my mammogram 6 months after I finished the rads (June). I have to see my MO every 3 months for the next 2 years. I have to go get blood work done a week before my next appt with her (March).
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Jeanelle, my BS is coordinating my care. Fine with me. I like and trust her (as I do the MO and RO). I don't have to have blood work as far as I know. I'm see my RO more often than usual since I'm part of a study on the effects of radiation on the skin. I can see why you are considering a job change. Nobody needs that kind of stress. Being a 50s housewife was very nice. I loved it. But gave that up in the early 80s. Now that I'm retired I'm back to being a homemaker and it suits me just fine
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Hi Pontiac Peggy -
Hi from a rainy Massachusetts. Once again - thanks for the continued feedback. I like others like I fell between the cracks during the Holidays, tooth extraction and bad cold while readjusting from the radiation.
MarieBernice6234
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Thanks pontiacpeggy, I've bought the book. I'll start reading it shortly.
Jeanelle, sounds similar to how I'm feeling about my job. I've worked so hard to get to my level and to prove myself in a male dominated environment (GIS and asset management coordinator), but right now I don't want the pressure. I'm performance managing someone which is also making it tricky. I do have income insurance and by BS has told me that I won't be working during radiation. Due to a 3 hour return trip each day. I can organize to work from home, but if I have insurance should I just not bother? It may mean my insurance won't pay me due to me working part time. I'm really not sure what to do. Apart from followup and tamoxifen have you finished treatment?
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Shaz, I really think you'll find the book informative. I did. Dr Love is awesome. Good luck deciding what to do about work. Three hours is a long return trip (isn't it 3 hours there, too?). With the usual radiation fatigue, that is a very long drive. I definitely think you should consider not working if it is a viable option.
MarieBernice and all the other ladies still very "new" here (and even old-timers), do consider getting Dr Love's "Breast Book." I got it in paper. It was worth every penny. And when the revised version comes out, I'll buy that one too. It answers almost every question you have. And if it doesn't, you'll find the answer here - mostly how do I manage xxxx, which bra, those types of things.
HUGS!!
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I have to say I do with Dr. Love would update her book - there's a lot in there that's useful but some that really makes me want to toss it across the room. I'm glad I didn't buy it but only borrowed it from the library.
One of my main peeves with her is that she advocates so strongly for the 2 year interval for mammograms after 50. There's LOTS of evidence that this is not a good idea, including the fact that radiologists are seeing more node-positive cases on initial dx. I think she's doing women a HUGE disservice on this issue.
Shaz - you may want to continue working part time from home during radiation, as long as you won't have a lot of time-sensitive projects. It will keep you in the loop professionally, which can be extremely important, particularly after taking medical leave.
On the other hand, if you'll have radiation during a time of the year when you would enjoy calling the time your own, that could make life easier in some ways.
Since you'd have such a long trip for treatment be sure to ask about options for shortening the treatment time, whether with brachytherapy or a lower dose of radiation. You may not be a candidate for either but it helps to discuss all the options.
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Hopeful, Dr Love is updating the book. And I suspect that her advice may change for mammograms after 50. She takes the best science available and a lot has changed in 5 years. In my case, I found the information contained in it invaluable. It was right on. I'm 69 so that may make a difference. I've always gone yearly for my mammograms. As we often mention here, what works for one person, may not be helpful for another.
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"...what works for one person, may not be helpful for another"
That's certainly the case, isn't it, Peggy!
I'm glad to hear she's updating the work. So much has changed in the five years since it was published - it's rather amazing when you think about it. ( A lot of what she has to say about Femara puzzles me, too, so maybe that will reflect more current knowledge as well.)
Much of the book is very detailed and helpful, which is part of why it frustrates me that she goes off the rails in some critical areas. One can't just write off the whole book as worthless, but you really have to know what to trust and what not to trust, and that's a challenge for many seeking such information.
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If you haven't checked out Dr Love's Facebook page, you might consider it. Also joining her Army of Women - dedicated to studying breast cancer. FB page is Dr. Susan Love Research Foundation. I've been part of the Army of Women for years - long before BC entered my life.
Army of Women, also Health of Women Study - both are under the auspices of the Dr Susan Love Research Foundation.
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I had not read Dr. Love's book (I have it now and am working my way through it), but this is an interesting point about the longer intervals between mammograms for women over 50. I am well over 50 and stay fairly well informed on health matters, and I had read so many contradictory articles and guidelines about mammograms. So when the health insurance my husband and I had through his work changed to a company that was refused by most all of my local, long-time health care providers, I kept putting off figuring out where to go to get my mammogram. I'd always gone yearly, without fail, before, but I wasn't that worried and told myself that according to various studies, the yearly mammogram might not even be a good idea. I was also pretty angry about the insurance issue. Practically the minute my husband retired and signed up for Medicare (I'm not quite old enough to qualify yet), I got myself a better insurance policy and took care of the most pressing things—colonoscopy (I have a family history so make sure to keep up with that) and mammogram. Colonoscopy came out fine, and I hadn't really let that schedule slide at all, but I was mighty shocked to find that routine mammogram DID find something—and here I am. It had been 3 years since I'd had a mammogram. I wish now that I'd gone sooner, but the doctor who did my biopsy and gave me the news of my DCIS told me that because it was Grade 3, comedo/necrosis, etc., the cancer cells were fast-growing, and micro-calcifications may not have shown up if I'd had a mammogram a year earlier as I now know I should have. It is difficult to make sense of this stuff when the experts in the field can't agree on what's best, isn't it?
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