A place to greet and meet newbies to stage III
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welcome newbies! My path started almost a year ago. Seems like ages. These boards are so full of information. Everybody is different on treatment. Chemo was easy for me. I got a port too which was great. Rads are proving to be difficult on the hand
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Day: I am sorry for your news. To me, chemo seemed like the worst part. I am also having a pretty easy time but I switch to Taxol on May 19th so who knows how that will god. Just get a wig or you can do something called cold capping which helps you keep most of your hair. It is expensive and complicated but sometimes I wish I had done it. Hugs.
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hi tectonic shift. Curious what extra treatments you had?
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Tectonic, nice that you get scans so you know your NED. My MO says the standard is not to do scans anymore because finding mets on a scan doesn't prolong life versus finding them when symptoms occur. So, he doesn't do them. I'd love to know I was NED. So far, I don't have any symptoms of a recurrence as far as I can tell so fingers crossed.
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Thanks for the welcomes everyone.
I still don't have the final pathology report, but read what was in so far. There were actually 7 of 12 nodes involved; 6 macro and 1 micro. The largest node was 1.2cm which was bigger than the 0.9cm primary tumour in my breast. It looks like there was also some DCIS in there. The left breast was free of cancer, but there were micro-calcifications and lots of fibrous tissue with only 10% fat. I feel that I made the right call with having a BMX. My surgeon said he didn't like to do both at the same time but would if that's what I wanted. My argument was one time anesthesia and one recovery. Now since I'll need chemo and rads I'm doubly glad I made the choice I did. My tumour sample is in for hormone receptor status testing. I'm not sure whether or not they'll run an oncotype test.
I have an appointment to see a MO on May 6 and RO on June 22, so it looks like chemo first in May and then rads. I'm glad to have an appointment. I'll make sure to educate myself as much as possible about the chemo so I can ask lots of questions. I spoke with my surgeon and he said he can install a port for me. He said a PICC would be another option, but from what I can see I would much prefer a port. I would like to continue to stay active and work through as much of my chemo as I can. Plus, summer is coming up, I live only a mile away from a beautiful lake, and I can swim with a port.
Thanks for the link to the staging, Lolis. I had looked through that after finding the nodes were positive. That's how I figured I was now stage III. Once I'm through chemo and rads I'll push harder for the genetic testing. I asked and my GP thinks it would be a good idea. She tried to order it for me but wasn't able to. I hope she can get me a referral to a genetic councilor who could order the test. I don't have a strong family history, but that's mostly because there are not many female relatives on my mom's side. My mom's ovarian cancer and my breast cancer are the only ones that would qualify me for the testing. My mom's mother never had cancer and all her 8 siblings were half siblings. Her father died as a young man in WWII. My sister died at 51 years old and did not have cancer that we know of.
Holeinone, I will definitely ask about DD chemo as opposed to every 3 weeks.
Ladyb, I joined the May chemo thread. I'm sure it will be very helpful as I'm going through treatments.
Thanks Jillian for posting. It's so good to see others who are many years out w/o recurrence. My s-i-l had stage III IDC in 2008 and has not had recurrence. She had a very large tumour but no nodes involved.
Tanya, thanks for reminding me that the cancer has been removed at this point. It does help. I had my surgery in Campbell River and I'll be doing chemo there as well. My MO and RO are in Victoria, so I'll be going there for consultations. I'll also have to do rads in Victoria and hope to tay at the Vancouver Island cancer lodge. There are weekly shuttles and private planes to transport those of us who live up-island. Are you finished with Taxol yet? Have you done rads yet or is that still in your future?
You are right, 2Tabbies, the waiting is the hardest. I feel better now that I have some appointments set.
DayLily15; I was also pretty bummed about my stage III dx. Will you be having chemo in May also? If so, I'll probably be seeing you on the May chemo thread. We can help each other out.
Dancingdiva; My mom also said for her the chemo (for her last bout with ovarian cancer) was not too bad, but radiation was really hard. I'm hoping I'll be able to work through most of my chemo, but will have to see how I tolerate it.
Kornelia
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Kornelia, you can ask your BS or MO for genetic testing. Mine was done by my BS and my family history of cancer is grandmother (father side) died of breast cancer at age 55 and my father had thyroid cancer. Because I have to sisters I wanted to know also for my niece and if I ever have a daughter.
Working through chemo is doable. I did that, had chemo on Thursdays, friday, saturday and sunday was recovery time and monday back to work. I worked from home.
Keep hydrated and listen to you body. If you are having chemo through the summer try not to stay too long out in the sun as you will be sensitive to the sun.
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Hi eaglemom, it's all doable, just hang in there. Like Lolis I worked through 6+ months of chemo, having infusions on Thursdays (day off), worked from home on Fridays, rest/recovery over the weekend and back to the office on Monday. Post-infusion Saturdays were the worst.
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thank you eaglemom. im thinking it will be chemo in may for me, i see the MO on may 13, so not sure how quickly treatment will start. sooo many "i dont know"s .
thank you all stage 3 girls for posting what you "know", makes it less of a shock when the medics tell me.
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Eaglemom - nice that you are able to do so much of it in Campbell River. I am done chemo now (finished Mar 27) and have completed 6 of 28 radiation treatments. I am very fortunate to live a 6 minute drive away from Royal Jubilee so don't have to travel far for radiation. I have met many others who stay at the Lodge and it sounds great. I worked through most everything so far, including chemo. I took a week off after my lumpectomy. And sometimes needed a couple of days after each chemo treatment. Also worked some shorter days. But I found it really helped to continue as normal as much as possible.
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I got my hair cut short yesterday and uploaded a photo for my avatar. My haircut was free because I donated my hair to make wigs for kids with cancer. I had over 12 inches to donate :-) I also got a few hats and scarves as well as some pocketed tank tops at Value Village (with a 30% off card ~ yay!) so I'll be ready once my hair starts falling out.
I asked my surgeon as well as my GP about genetic testing. Surgeon was totally unhelpful; said unless you have a family history of breast cancer, they won't do it, and my mom's ovarian cancer doesn't count. I think he just didn't want to be bothered. He's a very good surgeon, but I sense that he doesn't really like the office consultation part of his job. In the OR he shines. My GP was much more helpful. I'll try with the MO as well when I have my meeting. For now, that's lower priority for me than getting through chemo and rads.
Thanks Lolis, muska, and Tanya for letting me know that working through most of chemo will be doable. I only work part-time as it is so I hope to be able to schedule my work around appointments as much as possible. I'm thinking Wednesdays would be best for chemo since I have every other Wednesday and Friday totally off and my longest days are Tuesdays. Hopefully they'll let me pick the day.
DayLily15; I see my MO on May 6 and I'll hopefully get my chemo schedule soon after that. I will call to get an appointment with my surgeon for a couple days after the MO so we can schedule a day to put in the port. It will be good to have another Canadian stage III sister in the May chemo thread.
How is radiation going for you Tanya? How is your sister doing with her treatments?
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Eaglemom, I'm glad you have some appointments scheduled and a general plan in place. I had my hair cut short before chemo also. I couldn't find anyplace to donate it though. It had too much gray for the places who make wigs for kids. I would have thought somebody might want gray hair for older women going through chemo, but apparently not. Too bad. I had nice hair. I definitely think you made the right choice by going with a BMX. I agree with you on just doing it all in one shot too. A port is also way less trouble than a PICC line. Lots of us who have had them were very glad we did. I don't know what chemo you're getting. I had cytoxan and taxotere. It really wasn't that bad. I felt like I had the flu for a few days each cycle. Muscle aches and fatigue mostly. I worked part-time through it. I had my treatment on Thursday, and didn't feel bad until about Sunday. So I'd take most of the following week off then go back to work until the next treatment. I am fortunate that I could work from home if I needed to. I didn't find radiation all that bad either. I think radiation for ovarian cancer would be worse since it's likely to affect the other nearby organs. I didn't even have the bad fatigue from radiation that you hear about. I worked the whole time. You live in a beautiful part of the world. I have fond memories of a Vancouver Island vacation a few years ago. I hope you can get the genetic testing done. I had it done just because I had ovarian cancer and had an aunt who had some kind of gynecological cancer. It was the 50s when people didn't talk about such things so we aren't sure what she had. Anyway, my GYN ordered the BRCA testing for me before I was even diagnosed with BC. I turned out I don't have the genes. I wish I had because I'd have had a prophylactic mastectomy and spared myself stage III breast cancer.
I'll be thinking of you and DayLily, and Tanyah and anybody else still going through treatment. Hang in there, everybody! It doesn't last forever. I don't know if you've ever wished for curly hair, but you might get it from chemo. I did. It's a small silver lining.
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Hi Eaglemom - I'm doing great with radiation. Only treatment #6 out of 28 but no major skin reaction yet. My sister is doing ok as well. She has just finished the Taxol portion of chemo and starts AC on Friday. She is quite nervous as AC is more difficult for 90% of people, and was more difficult for me. Also, her hemoglobin levels are very low and she may need a blood transfusion. This has also cause a lot of fatigue - although looking after a 3 month old baby while going through chemotherapy can do that too!!
I am in Vancouver tonight as my Mother, sister and I meet with the geneticist here tomorrow (they are both here so it was easiest to just meet all together). I am unsure if they would refer you for genetic testing based on your family history. However, it was the MO who made the referral so you will likely learn more on May 6. I was also referred to meet with a geneticist about 10 yrs ago by my GP. She spoke with me about my risk factors but would not do any testing unless my Mom was tested and a genetic mutation was found.
As for the port, definitely get one!! They are great. It was the MO who arranged for this minor surgery after I met with him at the BC Cancer Agency. At the time, Victoria was so backed up that I went to Vancouver to have it done. They freeze the area and give you some mild sedation but you are awake the whole time (it only takes about 10 minutes). I don't think your breast surgeon will do it. I would recommend that you request the port be placed off to the side, near where your bra strap would normally go. My sister's was placed in the middle of her chest and she finds it gets in the way a lot and hates it. I have not had the same problems with mine.
Hope this helps and you're doing well! I felt much better after I met with the MO and had a plan.
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For your port placement, try this--put on your favorite bra, the one you wear a lot, and use a fine-tip sharpie marker to trace the outline of the straps and front cups. Then have an idea where you'd like the port placed. Mine was just to the side of my bra strap and worked well there. My sister's was much further down, closer to her breast, and it got in the way. Good luck!
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Hello everyone!
I was diagnosed fall 2014 and have been undergoing treatment ever since! Connecting with other women would be great, and so appreciated. While I have come so far and can check many things off my treatment list, there is a long road of future treatments/appointments etc - feeling very overhwhelmed right now. Thoughts/tips? Thank you!
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LHF2080 - so sorry you had to join this "club" I too was diagnosed late last year and am still going through the treatment journey. I realized today that I almost had 2 weeks of no treatments, dr appts, lab tets, etc while I waited to start rads. I decided to embrace it and try and remember that this will not define the rest of my life. At some point my life will go back to normal - maybe a slightly altered normal, but still a more normal. I also try very hard to live in the moment - enjoy each day I feel good and just remind myself that "today" is a "gift" and that is why it is called the "present". When my thoughts wander to the future or a dark place I literally say "STOP" which helps me focus again on the right now. I know it may sound simple and it isn't easy but I have been practicing this for several years now - it was my way to cope with some losses in my life and it has now become a way of life for me. That doesn't mean I still don't get sad or afraid or have a pity party - but I truly limit the amount of time I dwell in that place. imalso have found a lot of support and encouragement from some amazing women on this site and I hope you do too. Sending you positive thoughts and hugs...
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LHF, welcome to our group. Sorry your qualify to be here, but I hope we can offer some support. FWIW, here's my advice. Take one day at a time. Be kind to yourself, and ask for help when you need it. Ask all your questions. People here are happy to help you from their experience, but also ask you docs. Make a list of questions for your appointments. Feel free to rant here anytime you need to. All of us need a rant now and then.
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sbelizabeth, THAT is a great idea. Tanyah, I can't believe they placed ur sisters in the middle of her chest. Sometimes I wonder wth is going on through the surgeons mind.
I wasn't given genetics testing. I spoke to a geneticist and didn't qualify because I only had my grandma who died at an early age of BC but don't know exact age, my dad had kidney cancer, and no other female has had any cancer.
I didn't work through chemo, but I have 2 young kids, and was always active during chemo. I would say the day of chemo I was shot because of the benedryl they give u. Working is def innately do-able.
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I had genetic testing even without the history, someone is always patient zero. Maybe it is different in the U.S., I have a younger sister and a daughter who would need to start being monitored if I had been positive. No genetic mutation found.
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Robin, just bad luck? That's my take....
You look fabulous....
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Yes, bad luck! I had Mr. Murphy from Murphy's Law residing at my house for quite some time. Happy to say it appears he has moved on.
Thank you for the compliment!
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ny2txbaby. Thx for the great perspective. I'm fast approaching the next dense dose taxol on Tuesday. Then 2 more and done with chemo hell . I have 33 rads after that. Then what? It's all supposed to be fine after that right? Makes me nervous closer I get. I was thinking just today about when I was first told how I felt so out if control and now I have so much hope that there is an end then I second guess . so your words were good timing for me too.
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live deliciously.....totally understand the out of control feeling and the wondering what happens after treatment. I know it may sound weird but I was actually sad (and scared) to have my chemo come to an end - as tough as it was - I at least felt protected in some way while getting chemo. My nurses said that many women felt that way. I have always been a person who liked to be in control - a planner - and Cancer has truly made me realze how little control one has. But I CAN control the way I think and feel so I try and stay as positive as I can each and every day. Being negative or sad or angry won't change anything - just make me feel worse! I hope your final 2 taxol treatments will go well with minimal SE. sending your hugs and good thoughts!
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I don't think anyone can underestimate the enormity of the end of chemo..but please realize that the end of chemo is not a magic day where everything will suddenly be right with the world again. People not going through it don't realize that - their expectations need to be managed. I know I had to readjust my own expectations often...I would get so frustrated that I still felt like shit, that my family expected me to be okay. I couldn't turn all my old responsibilities back on so easily.
You need to keep being kind to yourself, continue to take it easy, I took advantage of the social worker at my Cancer center. She set me straight....it takes a good 18-24 months after treatment to heal and to feel emotionally good again. I'm not there yet, but I definitely see a difference, things get easier, fears subside, weight comes of, strength comes back.
I don't even know if what I just wrote is appropriate for the last few posts, I thought it might be until I re read it. So I will leave it out there...maybe it will help someone...
Je
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jen i totally agree ... took me quite a few months to get my feet back under me ..... just keep physically and mentally challenging yourself .... reconnect with people ... cut yourself some slack and let those close to you know your feelings
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thanks for the validation, jenni!
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Hi, my name is Susan, and I am newly diagnosed Stage 3. Was originally (2 weeks ago) diagnosed Stage 1. I had an MRI and there is a "tail" to the mass which is 3 cm longer than what originally thought. I also have at least 2 lymph nodes involved. Went to surgeon on Friday, ready to schedule surgery, but he threw me for a loop. Said he wanted to start with chemo to shrink the tumor before surgery (called neoadjuvant chemo). So now I have to meet the oncologist, have a port put in, go through orientation. Feels like I will never get started. Yes, I am very scared. Has anybody else had chemo before surgery?
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Gator, hi there, yes I had neo-adjuvant chemo, due to a large tumor. Not the "funnest" time of my life, but I lived to tell the tale. Is the cancer ductal or lobular?
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dear gatorgrad - first let me say how sorry I am you had to join this "club" but I know you will find a lot of support, info and comfort on this site because it is composed of many lovng, giving and positive women. I did neoadjuvant chemo. I liked the idea that we would be able to monitor / measure how well my tumor responded. My MO said that up to 60% of women have a total response and that most will at least have a partial response. My response was not total but it did reduce the size of my tumors by about 50%. Because my cancer was ILC and tumors were large I knew I would still choose MX - but still glad I chose neoadjuvant as I at least know the chemo was at least effective in killing some of the cancer cells. I too had positive nodes before chemo and 3of 4 of my sentinel nodes were still positive after chemo but no evidence of cancer higher up in my lymph system. Chemo was followed by surgery and now I am doing radiation which will hopefully kill off any possible microscopic cells in my lymph system. It probably feels very overwhelming at the moment - but use this site to ask questions, get tips and to find support as you move forward. I will keep you in my thoughts and prayers. Hugs
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