Good news / bad news
Now I'm trying to decide how to feel. And how to tell my family.
The doctor dropped it rather like a bomb. Part of me had convinced myself this can't be cancer. If nothing else because I had what seemed exactly the same before, but it eventually went away. Maybe this started out as the same and turned into cancer. Or maybe there's no connection at all. That doesn't really matter though, does it?
I guess the bad news is that I have Padget's.
The good news is that there doesn't appear to be an associated deeper tumor, and so far they haven't found any indication of spreading in mammograms or ultrasounds. My doctor (who seems very good, I've only met him twice) seems to want to act quickly but conservatively. He's a surgeon, but wants to try radiation if possible instead of surgery. He wants an MRI and a consult with an oncologist before deciding.
The program I was admitted to is only for diagnostics (that's not exactly the impression I got) but they said they are trying to get Medicare for the treatment phase. I don't have insurance, but I had care through a group, but the resources there are limited.
I can't decide how to feel. I was pretty calm in waiting, but now I know. And I guess I'm a little in shock. A little scared. But I want to have faith that everything will be ok. I kind of wish I had a friend to talk to in this, but I don't really have anyone locally, and I'm more concerned about my long-distance best friend, or my daughter, more worried for their sakes how they might take the news. And I don't think I'm in a position just yet to be strong for someone else.
Anyway. I guess that's it. That's all I know right now. Thanks for reading.
Comments
-
AnnieMae, is there a nurse navigator available to you through the breast center you've been seen in? She could be very helpful, informative and supportive. Another option is to call the American Cancer Society and ask for someone to talk to. That is a service they offer nationally. I would think that someone who's familiar with Padget's could be very helpful. Or go on the Padget's thread on this site.
I don't know enough about P's to understand what you're facing but I know you're shell-shocked, in need of someone to talk things over with, and seeing your life change before your eyes. I'm so sorry you're here and hope we can help. Take care.
-
thank you. I will look for that thread.
The nurses at the imaging center were very kind - everyone has been nice. I don't know if there's some local support group or something. Maybe something like that.
Funny, I've been through a lot of ups and downs today. After seeing the doctor, they got me in at the health clinic to talk about applying for treatment. At least up to now, things happen quickly. Which is good - if it hasn't spread then I'm thinking the sooner I get treatment the better. Also I'm off work for the summer (teacher) so the sooner I get in treatment, hopefully the sooner I can finish and go back to work. It's difficult having the summer without pay as it is. (I'm "part time" - really I work full time usually but only get paid for the hours I'm there.)
Sorry, rambling. I guess there's a lot coming into my mind. I'll look for that thread. Thank you!
-
I really understand, AnnieMae. Don't worry about rambling; your mind has a LOT to process right now. Sending gentle hugs and lots of warm thoughts.
-
thank you.
Yes, I seem to be going in a million directions. What can I get done before treatment starts in case it makes me too fatigued to catch up? Who will do those "must do" things if I can't? What will my daughter say? Shouldn't I rethink my diet - but I don't eat too badly. Except I need easy-to-eat just in case. Are there local support groups? (There are, but the next meeting is a month away.) Should I tell folks at Church since I might not be able to keep up with everything I normally do? But I don't want folks just talking about me or feeling sorry for me. But it would be nice to have a friend to hang out with I could tell this to. Except I kind of just don't want to talk about it. LOL back and forth.
I'm calming down though. Reading a bit more, and it's not that terrible of a diagnosis. Maybe a blessing in disguise, since I probably would have missed to DCIS entirely if not for this. Just the word "cancer" applied to myself is like one of those things you're always so afraid of, then if it happens ... I guess you have to buckle down and shift your frame of reference.
I did happen to notice how blue the sky is today though, and how nice the breeze felt. I just can't bear the thought of risking the loss of loved ones I just recently "got back" again. Long story. But that's the part I can't face yet, and it tends to be in process of years, so this "not so bad" diagnosis at this point isn't comforting on that level.
I'll work through it all though. Thank you for understanding.
-
Hi, AnnieMae... I was diagnosed with IDC and DCIS this month so am grappling with some of the same thoughts and fears. Just wanted to say you are not alone! Hugs to you!
-
AnnieMae, when I had some time and knew I was going to have to have surgery about three weeks out I cooked and froze a bunch of things so I had easily microwaved or reheatable stuff ready for when I knew I wouldn't be able to do it when I felt bad
-
I caught up with the laundry during that time, Melissa. LOL. Knew I wouldn't be able to lift those laundry baskets for a spell.
-
thank you, I appreciate that. I guess I'm just sorting through what I feel, and jumping through lots of hoops for appointments and financial arrangements. Things are going well though.
-
oh, it doesn't quote post or show who I'm replying to. I'm sorry, getting used to this forum. And my text is hidden when I type the first line, so please forgive any typos.
I was just thinking I should prepare some meals in advance. I don't want to rely one processed stuff. I've been eating a lot of cereal, yogurt, and fruit lately. I need to remind myself of good things to prepare ahead of time. And I have some work in the yard and house I'd like to get done before then. I've actually been VERY sick while going through the diagnostics and was moving some furniture around, so things are already in disarray.
I can do this ...
-
Your slow-cooker will be one of your best friends. Make large batches of healthy stuff (chili, soups, stews, etc.) and freeze individual portions. Canned proteins--salmon, wild line-caught tuna, sardines, cooked chicken--will come in handy and are ready-to-eat without cooking (and unlike a lot of shelf-stable nukable mixes, not processed. The exceptions are Indian meals in pouches, which are generally all-natural and not necessarily spicy). Hummus, baba ghannouj (if you can easily find it), tabbouli salad, etc. are all healthy and need minimal-to-no prep. Frozen fruits & veggies are easy to prepare and you needn't have to shop several times a week and worry about using them up before they spoil. Bagged and pre-washed salads are good too. If sugar isn't an issue, individual servings of flavored yogurt, rice/chocolate/tapioca pudding, flan, etc. are helpful. If you are within the delivery area for Peapod or Instacart, shopping becomes so much easier.
If you have a DVR, time to stockpile episodes of shows you'd like to watch; if a Netflix or Amazon account, time to pick the shows in your queue. You may get fatigue that gets too much for you to think straight as to which shows to watch, and it’s nice to have them lined up.
And don't be afraid to open up to your church--that's what they're there for. Wouldn't you jump at the chance to help a fellow congregant in a similar situation? There's also cleaningforareason.org, as well as takethemameal.org--the latter allows friends to pick a night to have a meal they choose (based on your registered preferences) delivered fully-prepared to your door for you & your family. Your nurse-navigator will have a wealth of other resources to help you through your surgery & recovery and on to the next step.
-
Wow, thank you, that is incredibly helpful. I was thinking of preparing some meals. I have probably two or three weeks before I might begin treatment, maybe a little longer. I need to quickly figure out things to eat. I am not familiar with a few of those things you mentioned. I usually have yogurt with cereal often though, and I like tuna, will look into canned chicken, and have a big crock pot.
I'm kind of worried about household chores, because I'm badly behind now, since I've been sick for a few weeks. I'm off work now for the summer (I'm a teacher) so hopefully little by little I'll get it done before treatment starts.
I should have told them at Church. Quite a few asked because I've been out sick for two weeks. It feels awkward, but in guess I'll figure out how to tell them. Strange, it's easier to type it rather anonymously online, but hard to tell people who love you face to face. So far I've only told my husband. (And my pastor.)
Thanks for those resources. I've never heard of them. I will check into them in case I need it and they are available. I'm not really living in a convenient place - I don't think there's any delivery (though Wal Mart just started online ordering and curbside pickup). And I'm probably 40 minutes or more drive from most people I go to Church with. But - will see.
Thank you so much. A lot to think about. I wish I had a DVR, but I do have Netflix.
Things I never would have thought about. Thank you again!
-
Well I found out today that I have to have surgery after all. It's probably stage 0 if they don't find anything else (MRI next week). They are recommending just a small surgery since it's hopefully just Paget's on the nipple and DCIS. Then radiation after.
It could still be much worse of course. I'm just not happy about being out for an extra month (though I'll get over that), but the anesthesia scares me (my body reacts weirdly to drugs). I am also concerned I might not be able to take any painkillers afterward, since they usually don't help pain, but they do cause continual vomiting. I literally thought I was dying the last time I took pain killers.
Well. Hopefully I will assimilate this new news soon.
-
LoveMyFamily, mine was purely self-preservation. My mom was thinking I should come stay with them for a month! Um, no...Wasn't happening;) I had to have proof I could feed myself on my own.
-
AnnieMae, if you’re not going to have a mastectomy, you might not even need a prescription painkiller. I wasn’t even given a prescription, and extra-strength generic Tylenol worked fine. Icing helped immensely.
-
I second Sandy on the painkillers. I dislike them. I had surprisinging little pain when they took a golfball sized chunk out of me. I took one pain pill, but then took Aleve & used the gel icepacks. I was only a little sore for a couple of days. Nothing major at all.
-
Wow, thanks, very much!
I usually just use naproxen sodium or Tylenol or aspirin if I need it badly, but really over the years the most serious thing I've had is dental surgery. I haven't ever had "real surgery" and I guess I was imagining it would be horrible. There is no expectation right now that they will do a total mastectomy, though I guess I have to keep my mind a bit accepting just in case. I've already been to the doctor being sure it wasn't cancer, and it was, and going in later being sure I wouldn't need surgery, and I have to have it. That ping-pong back and forth makes it a little harder to accept, so I think I'm going to not have such strong expectations from now on if I can help it.
I'll look for some ice packs I guess. And make sure I'm not close to running out of naproxen sodium, etc. Having things to do is good. It makes me feel just a bit more in control.
But I'm very glad to know how to be prepared, and what to expect. I'm very glad to think I might be fine without painkillers. The last time I had them was 20+ years ago, and they had to give me more medications to stop the vomiting. I know codeine and morphine types are out for me.
Thanks SO much!
-
The lumpectomy surgery wasn't as bad as I expected. My anesthesiologist was excellent. Last time I had surgery, I had a very sore throat, but for the lumpectomy, the anesthesiologist was careful and used the right size tubes. They use something called propofol, which wears off quickly. I did not use the pain meds after the first day, ice packs only.
-
AnnieMae, dental work and surgery hurts much worse than breast biopsy/lumpectomysurgery as far as I'm concerned. I could have gone to work the day after mine if I hadn't had the lifting restrictions. I'm allergic to steri-strips, so I was just glued on my incision, so I had to be careful about anything that would pull on my incision for about five days
-
thank you both, that is very good news. Hopefully I can talk to the anesthesiologist in advance. If nothing else, the surgeon knows he had to use several times the regular amount of novocaine to get it numb enough to do the biopsy.
I'm just hoping to get it scheduled soon then.
And I'm REALLY glad to hear it can be so uncomplicated. Yes, dental surgery can be bad, lol. I had some done last fall that they normally put people to sleep for, but I declined because I was worried about the anesthesia. I had no idea the surgery would be that rough. It was a horrible experience. But I managed that with nothing more than a few OTC analgesics. This sounds like it just might be a piece of cake in comparison.
Thanks again - VERY much. It's so helpful, since I really have no idea what to expect.
-
AnnieMae, you should absolutely be able to meet with the anesthesiologist the day of your surgery. As far as I'm concerned, the anesthesiologist is just as important as the surgeon.
I had minor surgery when I was 19, and I felt so sick after that surgery I was terrified that I would feel the same way or worse after my BMX.
I am also sensitive to medications. Most antibiotics make me extremely nauseous, and I'm allergic to a couple of them. I took Codeine once for a toothache, and I had a horrible allergic reaction to it. I told my anesthesiologist all of my concerns and spared no details with respect to my history and experiences with meds.
He was fantastic. He had an anti nausea med attached to my IV in case I felt sick when I woke after surgery. And I did for about 5 seconds when I woke, but the nurse released the med and the nausea dissipated immediately.
When I had surgery to clear the margins, that anesthesiologist put an antinausea patch on me before surgery. You may want to inquire about this to the doctor.
Wishing you the best for an easy surgery and fast recovery!
-
thank you, hsant.
I need to start keeping a log of all these suggestions so I don't forget. I appreciate your reply. I'll definitely tell him about the nausea. It was horrible with codeine after dental surgery, but it's been bad with others as well. I like the idea of being able to immediately do something about it. Whatever they gave me the last time though knocked me out and then required a catheter for a couple of days. The nurse said, "I bet they didn't tell you it would cause this!" and no, they didn't. I need to just stay healthy, lol. I don't like drugs.
Thanks again.
-
hello Anniemae. All of us here went through everything you are feeling: disbelief, confusion, anxiety and, most of all, sheer fear. I'm only a few months ahead of you, diagnosed in feb, lumpectomy then rads and now struggling with ai/tamoxifen.i can tell you i was absolutely terrified of the anasthetic and convinced i would die under it. Guess what, i didn't! Afterwards the was surprisingly little pain and i needed v little pain relief. I was driving 3 days later and back at work in a week. I was able to keep working part time through rads. The most annoying thing after a day or so was a nipping feeling under my arm from the sentinal node biopsy but even that didn't last. I wouldn't try too hard to get your house etc sorted if you don't feel up to it. Accept help; in a surprisingly short time you'll be in a position to give it back. Best wishes and every good luck to you.
-
AnnieMae, you can either buy the refreezable gel packs or save some money and buy some store brand bags of frozen peas or corn. (Just mark the outside so nobody eats them). Rotate--when one thaws, stick it back in the freezer and when 20 minutes have elapsed, put the other one on. Lather, rinse, repeat. Over at the Bonesmart.org boards, those of us who’ve been through joint replacement surgery learned how to make our own gel ice packs out of rubbing alcohol and water (double-bagged); but ortho recovery requires icing for a much longer time post-op than does lumpectomy, Cheap frozen peas or corn niblet will do just fine.
-
anniemae, for me, getting through the surgery was the scariest part... I have a v serious blood clotting disorder and had to go off my warfarin, take injections of a different blood thinner for 4 to 5 days before surgery, then take both after the surgery until the warfarin was back in the therapeutic range, so my fears centered around clotting or bleeding out. Neither happened I'm happy to report! Re pain meds... I didn't have significant pain....took Norco as directed but it made me feel fuzzy brained so on the second day I switched to Tylenol (can't take Nsaids due to clotting issue). Worst part for me was breaking out in hives from the antibiotic (I think it was ancef) used during surgery.... still itchy from that but most of the visible hives have cleared. Melissa lol on the mom thing... I can sooooo relate. I second/third the relief from icing. One thing I didn't expect, the seat belt in my car crossed over my incision. It's ok now but the first 2 times I drove I kept fiddling with it. Not sure what your doc will advise about driving after surgery but between the anesthesia and the norco I felt too loopy to drive until about day 6 after surgery.
-
thank you all. I'm feeling more and more ok about all of this.
Spent today dealing with various docs and insurance. They told me last week there would be a $400+ copay for my MRI tomorrow, and I asked them at the MRI place to check on that. I'd been told it would be fully covered and I can't work during summer, so ... They were supposed to verify it was fully covered. They called today to remind me of appt, and still hadn't checked, so they cancelled my appt because they needed a new authorization (which arrived in my mailbox today, but I guess they didn't get it in time. So now I have to reschedule MRI. Haven't heard back from surgeon about appt. Everything moved lightning-fast the first few weeks, now it seems like nothing is happening. But I guess I'll get it figured out.
The seatbelt is already bothering me since I have Paget's. Actually, it's healing up a bit, but that never lasts. Maybe it's in my mind, or maybe it was due to all the injections and biopsy, but it seems so much more inflamed and tender since I gift the biopsy. It's making me almost look forward to surgery, I guess. Almost.
Thanks everyone, so much. It's very helpful to hear your experiences, and be reassured, and know of thngs that will work. I have one gel freezer pack but it's the hard kind. Maybe I'll just go with peas. I used to use them a few times for my daughter when she was little.
Thanks again!
-
I was just diagnosed today. I am in shock. Totally healthy otherwise, don't drink don't smoke. 49 years old, no history of BC in the family. Lump is 20 years old (first one I ever had) and was clear 18 months ago. I need an MRI next week and lumpectomy. I wish things would just move faster, the waiting is the hardest part.
Categories
- All Categories
- 679 Advocacy and Fund-Raising
- 289 Advocacy
- 68 I've Donated to Breastcancer.org in honor of....
- Test
- 322 Walks, Runs and Fundraising Events for Breastcancer.org
- 5.6K Community Connections
- 282 Middle Age 40-60(ish) Years Old With Breast Cancer
- 53 Australians and New Zealanders Affected by Breast Cancer
- 208 Black Women or Men With Breast Cancer
- 684 Canadians Affected by Breast Cancer
- 1.5K Caring for Someone with Breast cancer
- 455 Caring for Someone with Stage IV or Mets
- 260 High Risk of Recurrence or Second Breast Cancer
- 22 International, Non-English Speakers With Breast Cancer
- 16 Latinas/Hispanics With Breast Cancer
- 189 LGBTQA+ With Breast Cancer
- 152 May Their Memory Live On
- 85 Member Matchup & Virtual Support Meetups
- 375 Members by Location
- 291 Older Than 60 Years Old With Breast Cancer
- 177 Singles With Breast Cancer
- 869 Young With Breast Cancer
- 50.4K Connecting With Others Who Have a Similar Diagnosis
- 204 Breast Cancer with Another Diagnosis or Comorbidity
- 4K DCIS (Ductal Carcinoma In Situ)
- 79 DCIS plus HER2-positive Microinvasion
- 529 Genetic Testing
- 2.2K HER2+ (Positive) Breast Cancer
- 1.5K IBC (Inflammatory Breast Cancer)
- 3.4K IDC (Invasive Ductal Carcinoma)
- 1.5K ILC (Invasive Lobular Carcinoma)
- 999 Just Diagnosed With a Recurrence or Metastasis
- 652 LCIS (Lobular Carcinoma In Situ)
- 193 Less Common Types of Breast Cancer
- 252 Male Breast Cancer
- 86 Mixed Type Breast Cancer
- 3.1K Not Diagnosed With a Recurrence or Metastases but Concerned
- 189 Palliative Therapy/Hospice Care
- 488 Second or Third Breast Cancer
- 1.2K Stage I Breast Cancer
- 313 Stage II Breast Cancer
- 3.8K Stage III Breast Cancer
- 2.5K Triple-Negative Breast Cancer
- 13.1K Day-to-Day Matters
- 132 All things COVID-19 or coronavirus
- 87 BCO Free-Cycle: Give or Trade Items Related to Breast Cancer
- 5.9K Clinical Trials, Research News, Podcasts, and Study Results
- 86 Coping with Holidays, Special Days and Anniversaries
- 828 Employment, Insurance, and Other Financial Issues
- 101 Family and Family Planning Matters
- Family Issues for Those Who Have Breast Cancer
- 26 Furry friends
- 1.8K Humor and Games
- 1.6K Mental Health: Because Cancer Doesn't Just Affect Your Breasts
- 706 Recipe Swap for Healthy Living
- 704 Recommend Your Resources
- 171 Sex & Relationship Matters
- 9 The Political Corner
- 874 Working on Your Fitness
- 4.5K Moving On & Finding Inspiration After Breast Cancer
- 394 Bonded by Breast Cancer
- 3.1K Life After Breast Cancer
- 806 Prayers and Spiritual Support
- 285 Who or What Inspires You?
- 28.7K Not Diagnosed But Concerned
- 1K Benign Breast Conditions
- 2.3K High Risk for Breast Cancer
- 18K Not Diagnosed But Worried
- 7.4K Waiting for Test Results
- 603 Site News and Announcements
- 560 Comments, Suggestions, Feature Requests
- 39 Mod Announcements, Breastcancer.org News, Blog Entries, Podcasts
- 4 Survey, Interview and Participant Requests: Need your Help!
- 61.9K Tests, Treatments & Side Effects
- 586 Alternative Medicine
- 255 Bone Health and Bone Loss
- 11.4K Breast Reconstruction
- 7.9K Chemotherapy - Before, During, and After
- 2.7K Complementary and Holistic Medicine and Treatment
- 775 Diagnosed and Waiting for Test Results
- 7.8K Hormonal Therapy - Before, During, and After
- 50 Immunotherapy - Before, During, and After
- 7.4K Just Diagnosed
- 1.4K Living Without Reconstruction After a Mastectomy
- 5.2K Lymphedema
- 3.6K Managing Side Effects of Breast Cancer and Its Treatment
- 591 Pain
- 3.9K Radiation Therapy - Before, During, and After
- 8.4K Surgery - Before, During, and After
- 109 Welcome to Breastcancer.org
- 98 Acknowledging and honoring our Community
- 11 Info & Resources for New Patients & Members From the Team