Lumpectomy Lounge....let's talk!
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While waiting in the women's lounge for radiation treatment today, I spoke with a woman that had radiation burns. She said she never expected to have any side effects from radiation. I told her I expected to have side effects and that is why I was so strict with my sleeping, eating, resting, etc. The only side effect I have is a little radiation dermatitis in the middle of my chest. Another women yesterday in the waiting room was clueless about radiation treatments, SE's and what type of cancer she had. And do you know what, she seemed happy being clueless. For those that take for granted and follow what their doctors tell them, good for them. I worry about the details and do a lot of research to make sure no stone is left unturned.
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Dizzy, so sorry that you have additional issues to deal with on top of BC. Praying that you get good results. Sending positive thoughts & a big hug!
Poodles, so glad you are feeling better. Hope you get to go back to work soon.
Grazy and Elizabeth, great picture. So nice that you were able to meet.
Have a relaxing weekend everyone. Our niece is visiting this weekend. Hope it stays nice so we can get out.
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Wow!!! I feel so far behind. Sticking inside my own head for a couple of days and I feel out of the loop here!
Elizabeth, thank you for the links. I will read them when I can.
Grazy and Elizabeth, I'm so glad you two got to meet! You look happy! I know you are up my way frequently Grazy, so maybe once the craziness of my first treatment and all the tests and stuff are done we can meet up on one of your trips. I'm figuring once I'm done with the tests, the first treatment is done and I know how I'm reacting to everything, I'll be going nuts sitting here.
You are all an amazing bunch of women. I hope when I get my head on straight I'm as wonderful as all of you!!
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Bagsharon-hi! Glad you joined-this is one of my fav groups! You and I are also connected on the September Chemo group.
Leslie-I'm also triple positive, and actually had a very similar situation as yours. I was originally ER/PR+ Her2- from my biopsies, but after surgery the path report from one of my masses (I had 2 in my right breast) showed as Her2+. Horrible surprise and major change of plans. I just finished up 4 cycles of AC, and start with weekly Taxol on 11/10. I will also be getting herceptin & Perjeta on 11/10...then every 3 weeks after (Perjeta stops after 4 tho). While I've had some missed work days (primarily due to a very rare reaction to the C part of my chemo called hyponatremia, that has landed me in hospital all 4 times), I'm still able to work...and hope to work throughout the year. We would be in some financial hell if I didn't.
I tried the Triple Positive discussion group, but soon stopped...as there was someone who freaked me out with some negative posts & I couldn't handle it at the time. I may try the group again in a few months...
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It has now been confirmed....... I have a heart of Gold. Early last week, I received a call out of the blue from the Hospital attached to my Cancer Center. I was told an appointment had been made for me to have an Electrocardiogram. Since I am having Herceptin added to my infusion this week it was normal... They want a good base line of heart function before treatment starts since this drug can harm the heart and has to be followed up pretty closely. Any Hoo.. during the course of the procedure, my heart turned completely gold on the screen... LOL !!
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Elizabeth, we all already knew you have a heart of gold!
I have a question for those of you who did chemo. I know that just like rads, chemo tends to be cumulative, which is what I experienced. How soon after your last treatment did energy and stamina return? I'm now almost 3 weeks PFC, and find I still get fatigued so easily. Yesterday went to my grandsons' Halloween parade at their school and wound up so exhausted. I worry a little since I'm now going into rads and have been forewarned that one of the more common SEs is fatigue! I have a feeling it's going to be a long holiday season. I'm scheduled for 28 regular and 8-9 boosts.
Michelle, I have a friend who never asked questions with bc, she just did whatever the drs. said. Afraid, I'm not like that either. No dr, as good as they can be, is perfect. And I'm the one who has to live with the decisions. Every dr on my team knows how much I research and ask questions. They're all great with that, and if they didn't talk to me and answer all questions, I'd find another dr! So far, I've been cry fortunate.
Hope all out there are doing well and enjoying a nice weekend.
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Dara, I also had a lot of fatigue PFC. Of course, I also had a BMX 6 weeks later. I had a lot of complications, including PTSD, so that really slowed me down and sapped my energy. Around 6 mo PFC, I became very anemic and required iron infusions. That perked me up a lot. I still have chemo brain; my MO says that could go on for a year or more. <le sigh> At least I'm not having any SEs from the Femara.
Well, ladies, I finished cleaning the two bedrooms that my son has occupied for 2 years. The bedroom looks great! I found beer cans, dead cockroaches, and spiders in his computer room. Eep! With all the spider webs it looked like a haunted house in there. But not anymore. I got it cleaned and vacuumed, and all the clean clothes put in the corner (he had a large pile of clean clothes on the floor--I just shoved them over on the other wall.) I even found 2 shirts and a pair of jeans that I gave him for Christmas 2015, still with the tags on them. After getting those two rooms cleaned up, I decided to vacuum my bedroom and clean my bathroom, too. I don't know what happened to me--I haven't had a burst of energy like this in about a year! But I'm hoping that from now on I can manage to get a couple hours work done every Saturday and whip this house into shape.
I'm pretty whipped now. I should be packing for a camping trip tomorrow, but instead I'm eating a Nutty Buddy and surfing the web. Thankfully, we have a camper parked in our favorite campground up in the North Georgia mountains, so all I need to pack is clothes and a little food. Everything else is in the camper. I plan to rest and recuperate for about 3 days.
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Elizabeth, not surprised that you have a heart of gold
Out enjoying the sunshine on the bikes and looking at the fall leaves. Nice day but very breezy here on the prairie.
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kdtheatre, In the beginning of my search for a "home" board, I checked out several on this website. I wanted to see the depth and breadth of what bc can do. I scared myself so much that I wrote about it and ChiSandy told me, "stay out of some of those other forums." I think you should just focus on positive support. You are going to finish your treatments and be just fine. I know a gal that is triple positive in one breast and only estrogen and progesterone positive in the other breast. She is in my radiation women's lounge and is doing fine. She is 52, I think. It will be over before you know it. I am finished with my boosts on Wednesday and plan to enjoy my time during the month of November before I see my MO on Nov 30th and get a 5 year sentence of tamoxifen or AI's.
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Michelle, that's interesting that you look at Tamoxifen/AI's as a five year sentence. I feel just the opposite. It is FIVE or TEN years of doing the most I can to prevent BC from returning. I am very glad for the chance to take Arimidex.
HUGS!
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Poodles, wow! If I didn't know better, I'd say you are pregnant
! That's quite the cleaning jag you've been on. Obviously extremely necessary. Michelle, I also had a good friend with ovarian cancer who never asked questions - she did not want to know anything. Her husband took over that job. Sadly, she lost her struggle with it. While another friend spent a year knowing something was wrong and finally got her diagnosis of ovarian cancer, threw everything at it, researched to high heaven, got genetic testing (yup BRCA1/2), lost her 91 year old mother to BC diagnosed at 90, but she is cancer free 5 years later. Each of us is different. I want to know but that is my choice. If someone doesn't want to know and just goes with the oncologists' recommendation, who is to say she is wrong? Just prefers a different path.
HUGS!
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Peggy,
My only issue is that I have to go off Zoloft, which has kept me steady and straight for 18 years, in order to take Tamoxifen. I suffered severe post partum depression and that is the drug that has worked for me. You can't take SSRI's - except Effexor - I checked, with Tamoxifen. Since I have regular cycles, I am a bit skiddish about the hoops I have to jump through to take an additional medication. Since I was diagnosed during pre-menopause, my situation is a bit more complicated. I wish I could take just one pill, but I have to be concerned about the other meds I take. So, the way that I see it, it is going to be five issue free years, or five emotional rollercoaster years. My MO is going to want me on Tamoxifen, she already stated her preference, so I will have to juggle other pieces of the equation. I am thankful for the medications, but not all that I have to give up to take them. I meet with my ob/gyn this week to see what plans we can make together with the MO.
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Michelle, that is a bummer. I can see why it is so distressing. I wouldn't want to give up something that has worked for me for 18 years either. Induced menopause might be the answer though not fun I would guess. Tough.
HUGS!
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Michelle, if your reproductive years are over, why wouldn't your MO be in favor of chemically or surgically inducing menopause so you could take an AI and keep taking Zoloft? Does your MO not comprehend the seriousness of clinical depression as a medical condition and not just a mood disorder? Seems like it's time for your MO and shrink to have a little dialogue
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ChiSandy, other than my psychiatrist that prescribes my meds, the other doctors all think "I can find something else." I am meeting with the obgyn this week to explore my other options. If I hear someone else telling me, "there are a lot of other meds," I am going to scream. SSRI's are in a category all their own and to rule out all but one is a pretty narrow scope of what I can take. I have kept my psychiatrist involved in the diagnosis and treatment plan for the bc and want her to play an active role in deciding upon these medications/medication changes.
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Michelle, I find that psychiatrists know pharmacology better than any other specialty. If you have a psychiatrist that you trust, I would go with his/her recommendations. I take several meds for bipolar, been on the same cocktail since 2009. There is no way I would change my meds! I'm pretty sure that mayhem would ensue and I would end up doing something stupid. So, my AI is just going to have to be happy with my antidepressants and anti-psychotics.
Haha, Peggy. The best thing about being 60 is NOT worrying about being pregnant. DH and I were just talking today about potential grandchildren and we came to the awful realization that neither one of us is really anxious for that. Thankfully, neither of my kids looks set to have kids either--I guess growing up with Christian was it's own birth control. I feel like I've done my bit to raise children and I have no interest in being up in the middle of the night with earaches, having my living room buried in toys, or changing poopy diapers. I am ready to live a little~!
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Poodles, I hear ya! And I totally get Christian and his influence. I'm never going to have grandchildren. I'm sad but not devastated. Living a little is definitely good! My brother still has one kid under 21 at home (well, college) and he's 68. Better him than me!
HUGS!
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Michelle I'm 42 and in induced menopause now...zoladex shots. Im on tamoxifen but will be switching to an AI soon. Anyways, so far medical menopause has not been nearly as bad as I feared. I'll probably have my ovaries removed eventually
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Leslie, sorry to hear you have to go through the chemo, Hercepton and Radiation route with your dx. Mine was similar but not triple positive so I do not need the medications after. I know that everything moves so quick once you are dx and they have your treatment plan it sends you spinning! There were times that I felt like I was standing watching myself go through it from somewhere else in disbelief. Never did I think I would get BC, radiation, and most of all chemo, but that was the plan for me. I am actually just past my halfway mark through Hercepton even!
As much as I did not like the port when I had it put in, for the most part I love it now. Makes everything so much easier!
I had the exact same chemo as you and radiation after. For me radiation was tougher and chemo was surprisingly much more doable than I expected. They have come a long way with the anti nausea meds and I was not sick at all. I did have my crash days when the steroid shot wore off, but again, was not like I expected. I did burn bad from rads but I am fair skinned so it was somewhat expected. Nothing was intolerable for me (at the time it was awful to feel so lousy but in retrospect I thought it would be much worse)
I am on a gradual return to work beginning Monday. In total I was off just over 9 months. I did go back to work a week after my lumpectomy which in retrospect was not a good move. Aslo I know my MO likes his patients to have 2 -3 months off after completing chemo and rads, for our own recovery. I work in retail and never sit, lift a lot and have a no regular shifts, so after my heroic effort of returning so soon after my lumpectomy and subsequent breakdown 4 weeks later, I listened to my doctors. I am fortunate that I have a great benefit plan at work so I was covered while I was off.
PM me anytime if you would like. Always remember you have a ton of support here and as was mentioned before, look for the chemo room for your month and join in there. I also found reading previous months helped. There is very little you need to bring with you on chemo day. I still remember thinking I must have stuck out as a newbie with the huge bag I brought! Hugs to you!!
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Not only is each SSRI unique, so is every patient's response to every class of antidepressant! When I was first diagnosed with PPD in 1984, my HMO's psychiatrists warned me that it could take at least 1-6 weeks to determine a particular one's side effects as well as whether I'd respond well to it. Back then, tricyclics were standard--Sinequan was the only SSRI out there and it was still too new to have a track record (and a year later, its chief SE--sudden arrhythmia--killed my dad at 72. He was warned about it, and had two MIs at 50, but felt continuing to live with a depression deep enough to be mistaken for dementia was unbearable). I had been tried unsuccessfully on Norpramin and Elavil, before I went to a private shrink who put me on Desyrel plus Xanax (at my highest anxiety and deepest depression, I was on 6 mg. a day of "vitamin X;" now, I take .25 mg. for sleep). Third time was the charm.
With all due respect to your MO (which is to say very little), I wouldn't trust anyone but a psychiatrist--and one with whom you have a rapport and are getting talk therapy--to make treatment decisions, much less pick an antidepressant and titrate its dosage. You wouldn't stand for your shrink deciding how to treat your cancer, your orthopedist managing your pregnancy, your GYN doing an angioplasty or your cardiologist performing a joint replacement. You shouldn't allow your MO to call the shots on managing your mental health. You need both an anti-estrogen treatment and an antidepressant that will work. AIs have been shown to be superior to tamoxifen at preventing recurrence in post menopausal women. You no longer need to menstruate or ovulate at 52. (I had periods till nearly 55 and had I gotten the chance, I'd have ended them far earlier). And you already know which antidepressant works for you. PPD is a life-threatening disease. This is not the time to start experimenting anew.
I would seriously consider getting a second opinion from a different MO and GYN
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Gaah--lost my post when I fat-fingered my iPad and hit Delete instead of Edit. Gist of it was that you have a successful treatment plan for depression, which is an imminently life-threatening disease. Changing drugs in midstream is stupid and dangerous. You have another option for starving any stray tumor cells of estrogen--and a cancer recurrence would take longer to kill you than would a suicidal crisis. Your shrink shouldn't treat your cancer, and your MO has no business calling the shots on treating your depression.
Every antidepressant in every class of antidepressant affects any given patient uniquely, and unpredictably. It can take up to 6 weeks to find out if a particular one is working. This is not the time to fart around and start from scratch. Seriously consider getting a second opinion from another MO and GYN--do you really still need to ovulate and menstruate at 52 ?
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Amen, ChiSandy, I have really liked all of my doctor's so far, I just don't have a good read on the MO yet. She sent me her notes from our discussion, highlighting how I refused to take Tamoxifen because of the Zoloft. If I don't start developing more feelings of trust with her, I am going to find an MO at Wash U. My feeling is, and I might be wrong, if you don't have chemo the MO is not too interested in you as a patient. Even with the Oncotype score of 14, no node involvement, huge clear margins, neg Her2 on two pathology reports, she wanted to continue random tests. I told her I was not interested. I had pathology out the wazoo, and enough to make a final determination. My RO was very supportive and even mentally prepared me to deal with the MO. I guess I am nervous because all the pieces of the puzzle of my bc treatment have fit together very well, except for the MO aspect. I am giving myself the month of November to heal physically and mentally from the surgery and radiation, before tackling the SERM decision.
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A good MO will not be set in his or her ways and administer cookie-cutter treatments. They will consider each individual patient's tumor, age, comorbidities and lifestyle considerations in making treatment decisions. If you get a vibe that this MO is chemo-happy ($?) or gives every peri menopausal patient tamoxifen regardless of age, desire to have (more) children or comorbidities, trust that instinct and go elsewhere. While in most cases it's nice to have a one-stop-shopping care team, it isn't necessary especially if you're uncomfortable with one member thereof or one facility
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Michele, while I did have chemo, I never got the impression that my MO wouldn't have been interested in me in a patient if I hadn't. At our first appointment, well before I had the tests results that pointed to chemo, he told me that I should consider him my PCP for the next two years at least (an integrated approach that I like, but more importantly, it told me he really was interested in my wellfare).
I agree with Sandy: trust is the most important factor, more important than the one-stop shopping: If you aren't sure your MO is paying close attention and especially if she isn't willing to work with your other medical issues, consider changing MOs or at least getting a second opinion. Listen to your instincts.
Hugs!
Octogirl
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It's interesting how different people's experiences are. I planned for two weeks off after my lx but I was feeling good after one week and was bored and lonely so I went back early, and was thrilled! I also worked through my entire treatment, two out of every three weeks during chemo and half days during radiation, and was so glad I did. I have never regretted it for a minute. I am struggling now with going back to a full caseload, but I would probably be struggling even more with going back if I had been off work entirely!
I would never say anybody should or shouldn't work through treatment... I think it is very personal… But for me it was definitely the right choice it gave me me something besides cancer to focus on, and I was able to spend my days with people I really like doing something I found meaningful. At my age all of my friends work, we are all too old to be on maternity leave and too young to be retired, I would've been very lonely if I was home! As it was I was practically running back to work after my chemo weeks off. I'm a social worker in child welfare so it's not like I have a low stress job! I did have some accommodations though, and for eight months of it I was actually doing a contract in another position, which was less stress but more physical ( I was on my feet a lot providing desk-side IT support, so going back-and-forth between desks and from one side of the bridge to the other all day).
Anyway as I said, I would never suggest with somebody else would do everybody has to make their own decision, I'm just giving a bit of a different experience for somebody who might be considering working, it's not a given that taking off is what's best. It might be, I'm trying to work (especially if you have flexibility and can get some accommodations might be as well
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Hey LovesToFly, we are kindred spirits...Although I am going off work for now until I know which end is up at least, I know I'm going to miss work. I work with at risk teens in a high school, and I love what I do. I probably work with many of the same kids you do. I'm not looking forward to telling them tomorrow that I won't be around for a while, but I won't leave without telling them anything. Many of them are too used to people just disappearing on them. After I can see how I'm feeling, I'll make decisions, but since I'm a 10 month employee, I will have to check how going back will affect (effect? I hate that word) things if I do go back here and there. Can't cut off my nose to spite my face.
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So true Leslie! Yes I was lucky that I had the flexibility to do what I did (because we bank sick time, I had enough sick time to just cover all my days off so I was never actually on a leave and I was able to come and go as required), also that I was at the IT position when I got diagnosed, I think that if I got it diagnosed when I was a frontline caseworker, I would've taken a leave. As much as I would've missed work, I think I would've been too overwhelmed by everything to even consider managing that job during cancer treatment. The IT job had me on my feet a lot more, but it was a lot less stress and demand, and I was part of a team of 7 that could cover for me whenever I needed time off… In my usual position I am the only worker for the kids on my caseload and it's very hard if I'm unexpectedly off a lot. I did go back to that job, but on accommodations and I had built the confidence while I was doing the contract
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Celebrated our 22nd wedding anniversary last night. Wanted to go to our club, but it was a Halloween themed event. Instead, we went low key to Baker's Square, and for a drive in a nature preserve which was just full of deer. Took the convertible so the top was down and I could really see all the beauty of nature. It was a nice, peaceful anniversary, topped with watching the Cubs. My husband and son (now in Switzerland) are huge Cub fans. They are heavily emotionally invested in their "team." My son watches the World Series on his laptop and when the Cubs won the deciding game to go to the World Series, he was so happy that he woke up his dorm. This has been my son's dream since he was four years old. Both he and my husband, go to spring training every year in Mesa. My son might intern with the Cubs, when he returns from Switzerland, if he can fit it into his academic schedule. He did a position paper and stats analysis for a full semester this past spring, on how the Cubs would make it to the World Series this year! To be 20 and living the dream......
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Happy Anniversary Michelle! Glad you had a good time
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Happy Anniversary Michelle! I totally get where your son is. I remember when I was his age (well...maybe a little bit older) and the Blue Jays won 2 in a row...it was fantastic!! I got to go to the game the night they clinched the AL pennant. Wow, the energy!!! I'm rooting for the Cubs myself, being as they haven't won in so long, and the fact that I can't stand the Indians! Lol
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