Best Of
DCIS Stage 0 High Grade HR+
Hello to all you brave women!!
I just joined this site and am making my first post. I am hoping for guidance and advice and what anyone else has done as I am feeling anxiety and some stress about what to do.
I am 55 years old and was diagnosed in June at 54 years. (I just had a birthday in Oct)
As in my title I was diagnosed with DCIS Stage 0 High Grade (Grade 3) HR+
I had a lumpectomy in the left breast, no lymph nodes, and am now awaiting to start 9 rounds of radiation. 5 in the whole breast and 4 at one particular area. Margins were clear, however one side of the margin was only a 1mm clearance so that spot is the one that is getting the extra 4 rounds.
I don’t know if I should start Tamoxifen. My MO did not seem overly concerned about me taking it and left the decision up to me.
I am waiting to see if I qualify for genetic testing.
I should add that my sister who is 62 is Stage 4. Breast initially and now her bones. She did not do radiation or Tamoxifen. Her recurrence came after 12 years and is now on Chemo and is doing very well.
Did anyone opt to not take Tamoxifen or an AI that is similar to me? I’ve had the lumpectomy and am doing the radiation. IF this were to come back as another DCIS, I’ll be honest, I am fine with another surgery.
My concern is with all the possible side effects.
Many thanks!!
Immediate reconstruction vs. going flat now and possible reconstruction later
Can someone tell me the risks & benefits of having immediate autologous reconstruction in the same surgery as single mastectomy? And the risks & benefits of going flat after single mastectomy now, but considering having autologous reconstruction a couple of years later? The breast had radiation treatment 18 years ago for DCIS, and a new DCIS means mastectomy is necessary.
I can't tolerate the idea of having an expander; I have a sensitive body and they sound like nightmares.
I'm panicking a bit about going flat now (current plan) because that means removing more skin. What would that mean for reconstruction later? Implants aren't a good option for me.
Is there another option besides going flat or having immediate reconstruction? Like skin-sparing mastectomy? My surgeon is great and patient (same surgeon as 18 years ago), but I'm struggling to figure out what questions to ask and how to figure out all the differences between my options. Her hospital does not offer immediate reconstruction during the same surgery; I'd be waiting a year or more for autologous reconstruction with the PS she recommends.
Many thanks.
Re: Immediate reconstruction vs. going flat now and possible reconstruction later
@mandy23, thank you. I need to keep reminding myself that this is a bad situation, and there will be no perfect answer or a reconstruction where everything looks exactly as it does now.
With your skin-sparing mastectomy, did you have an expander put in? Or do something else to maintain the shape until reconstruction? I'm trying to understand if there are options other than going flat, delayed reconstruction with expander, or immediate reconstruction in the same surgery.
who' s had lumpectomy plus bilateral breast reduction? let's talk!
Hi friends, I'm 72 ad live o my ow in Portland OR. I was diagnosed in August with what turned out to be stage 1 grade 1 tubular tumor E/P+ER- approx 1.4 mm at 5 o'clock position in my right breast. I was offered bilateral breast reduction (mammoplasty) as a form of reconstruction and jumped on that like a duck on a junebug, as my BMI wss too great to get one otherwise, and ladies, them jugs was heavy!
My feeling when diagnosed was that it was a wonder I had escaped for so long, after so many 2nd-look mammos and a few ultrasounds. My heast sank when I saw the Kaiser phone number come up a week or so after my routine mammo, I just knew somehow. I've been sad of course but it didn't have the devastating impact that it would have when I was younger.
Lumpectomy and ALND with mammoplasty on 10/9, whic took me down from DDD or E to what looks like is probably a C, halleliujah! And already no more of those awful upper back and shoulder aches. They also found LCIS (which is called "carcinoma" so initially quite frightening ,but is actually pre-cancerous changes) in my left breast in tissue fromthe reduction which they also sent to pathology. On the Right breast they found good clear margins and no lymph node involvement, thank you sweet little baby Jesus!
recovery going reasonably well except for nerve pain. On gabapentin for that which I find is making e troublingly scatterbrained. For a while I thought I might have spitting stiches keeping the incisions inflaed and angry but the RN I saw for an extra check this week says not. (I still thing I feel whiskery things poking out in a few places.)
And the compression bra was initially true torture!!! I have a larger upper abdomen made worse by post-surgical swelling so the band relentlessly rode up and dug into the incision line….Plus I have a latex sensitivity which realized might be contributing to what I feel is slower healing …
I've developed quite a few hacks to make compression more tolerable and would be glad to share them.
Plan is for 5 day whole breast radiation, with simulation on 11/17 and treatment probably starting week of 12/2.
Arimidex was initial recommendation, but I told the Nurse Practiotiner from the medical oncology dept that I really didn't need more muscle pain thank you very much, so since my bones are in pretty good shape so will try tamoxifen starting after radiation.
My understanding is that the estrogen inhibitor is largely for the sake of the precancerous cells on the left and the radiation is more to prevent local recurrence on the right, plus being a bit of insurance in case I can't tolerate any of the estrogen blockers or aromatase inhibitors., It sees a bit of a bild-and-suspenders approach but reasonable enough to give it a try.
I'm still learning more about the LCIS. Plan according to my surgeon is just watchful waiting , mammos every year and some ultrasounds.
I'd love to put my head together with others and at least share our lamentations! Thanks my sisters!
Latissimus myocutaneous flap
Hi
I would like to know if anyone has had this procedure? I had breast cancer 15 years ago and then treated with radiation. Breast cancer returned this year and I had a double mastectomy. I decided to go flat. One side healed normally. The other side due to radiation damage with the skin and underlying muscle and tissue did not heal right. A portion of it has healed to my ribs . Plastic surgeon said he could repair with this procedure. It involves a lot more than I thought I might need. I am very apprehensive because I don’t want to trade one problem for another. Any help in this surgery would be greatly appreciated.
Thank you
sandyk1
Re: My Husband, My Life, My Love, My Family, My Cancer
I got 3 years out of Ibrance and then progression. I elected to do Doxil rather than Truqap because I’m traveling leaving tonight and diarrhea is the main side effect. I have had two treatments of Doxil and my only side effect has been slight transient nausea not worth medicating. My hair is supposed to fall out but it hasn’t yet. Doxil is related to the red devil but not the same. My advice is to not let the book scare you. Mot all IV chemo is horrible
wren44
Re: My Husband, My Life, My Love, My Family, My Cancer
I slept pretty well last night, just woke up. Got a few things I want to get done today, really need to pull burner out of stove and give a good thorough wipe down, take out inside of burner and soak in soapy burner. Too bad I cannot put the electric coil but obviously that cannot go. Been horribly stinky when I do use the burner so it needs a good go over to clear anything that may have gone through and on burner itself. It is a tough clean, got a wire brush going on the inside, soaking the container part and will be continuing to wipe the burner. If I do not get done on time, will microwave something or have a pizza with some of the chicken on top or chopped beans
Got laundry to catch up on, more recycling to organize and put in a container til garbage day Thursday night. Pull out what I need to. Might also use my smaller garbage container, load it up and roll down the stairs, little more efficient. I will see about that because I may convert the small garbage can into a cat litter holder and stick it by the litter box, not sure as of yet.
Tigger is no longer the treadmill master but the sucky lap cat which is nice, he has also taken to sitting atop the various containers sitting round the living room holding recycle and other stuff with them. This time he is on the recycling container. Have a ton of bags to recycle from Walmart but of course that is alright. My main store for delivery, remembering to use Paratransit when I go out.
No breakfast planned as of yet, may just be some mashed beans to go along with a meat pie. Will worry about frypan meals after I put together the stove again.
I hope everyone is having a good day and in pockets for all others. Only other thing occurring to me is to change filter on the wet dry vac, move out the litter box and everything else and give it a good powerful vacuum, I will see.
Re: Can we have a forum for "older" people with bc?
Cindy - sending prayers for your niece. If it is pancreatitis that is nothing to fool around with. My brother developed it after gallstones and it took several months to clear up. Of course, he waited a very long time before he finally went to the ED. Hopefully your niece can be treated quickly.
Betrayal - welcome home! Where are you off to next?
Sandy - I hope Bob is doing okay. That sounds like a nasty fall.
Chris - I hope you get your SNAP benefits soon. Wishing you good luck with the thumbs.
Our pool is being removed this week. When the liner was removed we discovered the metal panels behind the liner are rusting and the PoolCrete floor is cracked. We are not surprised but it reinforces our decision to remove the pool. The cement patio on the bottom right of the picture below is cracked and crumbling. It is also being removed. They expect to finish by Thursday.
Waving hello to all.
harley07
Re: How long have you been Stage IV?
Erstdiagnose vor 6,5 Jahren ER+PR+Her2 neg mit ausgedehnten Knochenmetastasen. Also sofort Stadium IV.
Knochenmetastasen.mit Zometa behandelt. Diese musste leider abgebrochen werden wegen einer Kiefernekrose .
Nach weiteren 3 Jahren Entfernung einer Nebenniere mit Metastasen.
Vor 3 Monaten erneute Metastasen in Eierstock, Leber und Bauchfell. Eierstöcke konnten entfernt werden. Jetzt Behandlung mit Fulvestrant (Spritze) und Truqap (Tablette).
Mir geht's aber trotzdem immer noch recht gut.
TRANSLATING FOR THE OTHERS:
Initial diagnosis 6.5 years ago: ER+PR+HER2 negative with extensive bone metastases. So, immediately stage IV.
Bone metastases. Treated with Zometa. Unfortunately, this had to be discontinued due to osteonecrosis of the jaw.
After another 3 years, removal of an adrenal gland with metastases.
Three months ago, new metastases were found in the ovary, liver, and peritoneum. The ovaries were successfully removed. Now being treated with fulvestrant (injection) and Truqap (tablet).
Despite everything, I'm still doing quite well.
acki05
Re: Can we have a forum for "older" people with bc?
Yup. Got the cast cut off yesterday. Then went down to the OT department and had a lightweight splint made. Had a late lunch, then showed up for podiatry early, but they called me in early. I have to wait a week for new orthotics. In the meantime she put some padding down by the tarsal metatarsal joint of the little toe. I looked that up. Parallel to a certain thumb joint.
Went home, A friend and I thought there was a meeting at church but not. My Visible told me to take it easy today. Doh!! I got through it without getting super tired. Still doing space bar with forefinger.
This is my last week with bike. Won't be getting it out unless in an emergency after this week, temps below freezing every night. 😪 Doctor and I discussed left thumb. Still don't know for sure. Wearing a splint on that hand all the time, too.
Glad for the negotiations on SNAP, but I could have squeaked by on Advantage Plan groceries and pantry.
Busy writing again, massive Bible study project. So glad for the cross-referencing and footnotes of Catholic Bible. We don't use a Concordance.
Meds safe expected today. I won't be keeping it in such an obvious place. So dumb!!
Cindy, will be adding your niece to my list of prayers, as well as wren and intolight.
mcbaker