tubular carcinoma
Comments
-
Hi all,
It was a long day with an ultrasound guided fine wire insertion, a mammogram to check placement and then the surgery which went well...now I wait 2 more weeks for the pathology again. If they don't have clear margins or it is more exciting then he thinks, they may need to do more surgery and possibly look at the lymph nodes...time will tell. The surgeon was great...as were all of the people I dealt with today...all super nice. The surgeon indulged my questions...I know many don't like that lol...he was very patient and answered them all...said if I had anymore to call his office. There was some debate in the operating room about using the left side for IV as that is the side that I previously had Breast Cancer on including a 3 lymph nodes removed...the anesthesiologist and nurse didn't seem to think it mattered, but the surgeon who was sitting across the room waiting for them to get me done said it did matter and not to use that side...so they did the IV on the right.
I'm very glad the spot is removed
Hope you are all doing well...take care and stay healthy!
0 -
So glad to hear all that, Isee. Good to get it over. The waiting now for the pathology is harder than anything. Here's hoping for the best results possible. Take care x
0 -
hi Isee, I'm glad the surgery went well and that the surgeon was available to answer your questions , that helps so much! How are you feeling now? Have you had any news on pathology yet? I hope the follow up is uneventful as possible. Please continue to let us know!
As for me, I finally got a date in April for the fat grafting which is to precede implant exchange. No date for the latter, I assume it will be after summer. I really can't wait to be done, but Covid has made everything so difficult and unpredictable.
I hope the pandemic is easing where you all are. With vaccinations proceeding so slowly here it's not easy to see a return to normality coming anytime soon.
Best wishes to all.
0 -
Hi Mountainlover and grainne,
I'm feeling pretty good, my incision has healed up well...I'm still waiting for the pathology report. I'm hoping it will be available to me on March 3rd. Follow-up by phone with the surgeon is on March 11th. His receptionist said he will phone me if it is available sooner.
Glad you at least got a date for your procedure Mountainlover...I hope that goes well for you.
Canada is way behind with our vaccination rollout. Our govt. has made some real bonehead moves with their strategies for acquiring vaccines for Canadians. Hopefully we can get back on track and get as many people as possible vaccinated ASAP. If we are back to normal by next Christmas I'll be surprised. I sure hope these variants don't take off and cause an even bigger problem.I'll post when I get my results...did I say I hate waiting??? lol.
Take care!
0 -
Update....
Finally heard from the surgeon after 20 days. They ended up sending the tissue sample away for consultation...
He said it is a 9mm ductal carcinoma in situ (DCIS), a papilloma in a duct surrounded by cancer cells but not invasive. He said he got good margins.
He said it's on the border of the size of what the Cancer Clinic would want to do radiation on...but with my mutation they might want to do that...he is going to contact them and they will call me.
He said the other spot that was indicated on the MRI I had in December does not show up on ultrasound so they can't biopsy it...but they will watch it on the MRI and Mammogram that I have alternating every 6 months.
I'm very happy that the larger lesion was removed before it became invasive...So, all good news for now!I'll post when I hear from the Cancer Clinic. It will be interesting to see if they recommend radiation or not...given that it is 1mm smaller than the recommended size.
I am also interested to see the pathology report...going to try to get a copy of it tomorrow.Hope you are all doing well! Take care and stay healthy!
0 -
Isee, that is indeed good news....I am very happy for you and, yes, it's good to get keep us posted.
0 -
That sounds very good Isee! Would you have preferences/views on getting radiation? I hope that whatever will be recommended gives you peace of mind.
Things are fine here,thanks. Side effects of letrozole seem to have improved a little, I hope this continues. Less pain and better sleep are giving me more energy, Overall, I've been feeling closer to my pre-cancer life, which is good.
Take care !
0 -
Howdy, just got back from a week at our cabin on the west coast...some fairly big storms, heavy rain, wind and big waves...very exciting. I would have to go live in a town 2 hours away if I have radiation treatment...that's a bit annoying but I do have a daughter there that I can stay with. Given that radiation is supposed to give you a 62% reduction in a reoccurrence, I will go for it if it is offered. I'm still waiting for the official word, but I had a message from someone in the clinic I'm in for the BRCA mutations and he said I was in the cue and that the oncology radiologist team would be contacting me with a date and time. It has now been almost 5 weeks since my surgery...they say you should have radiation between 8 and 12 weeks...so I'm assuming I'll hear soon. Hope so anyway...always nice to be able to plan life.
I was looking at your DX Mountainlover...have you been tested for a BRCA1 or 2 mutation? You were fairly young at 47 when you got BC. Glad your side effects are improving and you are feeling fairly "pre-cancer".I hope you are doing well too Grainne...we just celebrated St. Patrick's Day here last week. My Grandmother's maiden name was Fitzpatrick and hubby's family was from Ireland. Last name was Charleton...I personally think they were more British than Irish lol.
Take care all and stay healthy...I'll update when I get the call!
0 -
Hi Isee thanks for the update!
Your cabin sounds amazing! We are very limited as regards traveling over here, and as of Saturday we'll be facing even stricter Covid restrictions so it's hard to imagine being able to travel any time soon, but I am so looking forward to spending time in "real" nature, I'm glad you have a chance to do that.
Thanks for asking about me. I actually enquired once again about genetic testing when I saw the MO yesterday. He reckons that with my being over 40 at diagnosis and the type of cancer I had, likelihood of mutation is low. I think I will raise this again when I see the BS in summer. Besides me, I am concerned about my daughter. But she's only a child now so we have a few years ahead I guess, before this becomes really relevant. Or so I hope.
I think I did pretty well in keeping anxiety in check prior to regular appointments etc. so far, but it hit me real hard yesterday morning, just a few hours before I saw the MO. Half a day of anxiety every 4 months would be more than acceptable to me, but I know I must work on this. Let alone the surgical procedures coming up and all the time in hospital and the multiple appointments due to those. Maybe it will get better with time?
Anyway, I hope you hear from the clinic soon, and let us know how things progress.
Take care.
0 -
Hi Ladies!
I was diagnosed with IDC in Dec and had a nipple sparing SMX with tissue expander placement on 1/28/21. My final pathology came back showing tubular carcinoma 6mm: ER+, PR+, stage1, grade 1, no lymph node involvement and few areas of DCIS. My treatment plan didn’t require chemo, just tamoxifen. I’m not currently taking tamoxifen bc it made me very ill. My oncologist told me to try it again in a month or so.
My question: Those of you that have this diagnosis, what is your treatment plan and how long have you been NED? I was told this is a rare cancer with an excellent prognosis. My genetic testing was negative, however I have VUS in BRIP1 and CAHD1.
0 -
Hi everyone...
Welcome emBri79!Sorry you have joined our little club but yes, bonus for us that tubular is not likely to spread! Mine was about 1.2 cm...I had radiation but refused tamoxifen as it was going to give me only a 1% reduction in a reoccurrence. I can't remember if I have mentioned this on here before, but several years ago, my sister who also had the BRCA2 mutation was put on metformin by her doctor to reduce cancerous tumor growth which it has been found to do in BRCA people...I suspect it may do the same for anyone....anyway, my poor sister passed away last March after having had 3 breast cancers and then a metastasis to bone (37, 60 and bone at 65)...after that happened I stopped taking the metformin as I decided that it hadn't worked for her as she died so there was not point to it. That was about last June. Last year in March (one year ago) I had a mammogram and there was nothing showing on it...then in September I had an ultrasound...as part of my high risk surveillance program and at that time 3 spots of concern were seen. They were VERY small. They wanted to watch them for 6 months, but I managed to get in for an MRI in Dec....the spots were now probably double in size in just a few months. Then a biopsy at the end of Dec. showing that one was a cancerous lesion, one was a lymph node...one was not visible on ultrasound so couldn't be biopsied but will be watched. By the time the largest was surgically removed it was about 1cm in size, and was another very rare type of cancer but not invasive, thank goodness it was a papillary DCIS. My point is, that you might want to do a bit of research on metformin. I am back on it as I now suspect that if I had stayed on the drug, I would not have had a new primary breast cancer...as I was cancer free for 10 years...until I stopped taking metformin. I take only 500mg...a very low dose. I am currently waiting to hear about radiation treatment. I suspect it will be soon.
Happy Easter all...stay safe and healthy!!!0 -
Hello ladies, I was wondering how everyone is doing. Isee, I hope you have heard from the radiologist team by now. Embri79, my treatments are in my signature, but my dx is recent. I hope I will be able to confirm the excellent prognosis for tubular BC many years down the line !
I had fat grafting on 9 April and will take the pfizer shot later today. I had been invited to register for the vaccine weeks ago, but the surgeon asked me to wait 3 weeks from surgery. I am somewhat nervous and excited at the same time. I can't wait for this covid lifestyle to change. The semi-lockdown and travel restrictions after over a year are becoming very draining for me and my family. I look forward to the summer and hope it will bring a real change.
Take care of yourself ladies!
0 -
Hi everyone...
WOW Mountainlover...glad you are on your way to your reconstruction. I don't know much about that, but I gather you have more to come? Interesting about your doc not wanting you to get the vaccine until you were 3 weeks from surgery, did he tell you why? I got mine on April 2...I hope it lasts through my radiation treatments.
I had a call from the intake nurse today who asked me a ton of questions. Even asked me if I had thought about my end of life plans and that she was going to send me some information about it so I could think about it. Go figure...not sure if that's cause this is my second breast cancer or not...they didn't ask me that the first time I had BC. I thought it was a a bit strange. I have no intention of kicking the bucket for quite some time. I have a phone appointment with the radiology oncologist on May 6 so will then finally know what my dates are. We are off to the cabin tomorrow for a few days...so lucky it is in our health area, otherwise we wouldn't be able to go, like so many others. We have been told not to leave out health authority in an attempt to get our Provincial covid numbers down.
Stay safe everyone!0 -
Yikes...wrote a post and then managed to delete it...go figure...I did find it, so here it is again lol
Hi everyone...
WOW Mountainlover...glad you are on your way to your reconstruction. I don't know much about that, but I gather you have more to come? Interesting about your doc not wanting you to get the vaccine until you were 3 weeks from surgery, did he tell you why? I got mine on April 2...I hope it lasts through my radiation treatments.
I had a call from the intake nurse today who asked me a ton of questions. Even asked me if I had thought about my end of life plans and that she was going to send me some information about it so I could think about it. Go figure...not sure if that's cause this is my second breast cancer or not...they didn't ask me that the first time I had BC. I thought it was a a bit strange. I have no intention of kicking the bucket for quite some time. I have a phone appointment with the radiology oncologist on May 6 so will then finally know what my dates are. We are off to the cabin tomorrow for a few days...so lucky it is in our health area, otherwise we wouldn't be able to go, like so many others. We have been told not to leave out health authority in an attempt to get our Provincial covid numbers down.
Stay safe everyone!0 -
Hi Isee! So weird to be asked about end of life plans by a nurse...what is that about (trying not be rude here) ?? I wouldn't appreciate it, that's for sure, Is it even allowed? I can't see how that could be relevant for a BC treatment center ... Anyway, I take it radiotherapy has been confirmed then. Do you know how many weeks that will take?
As for me, yes, I still need one step in reconstruction, i.e. to have the temporary expander replaced by a (hopefully) permanent implant. They told me they have to wait a few months after fat grafting which means July or August. But for family reasons I may end up asking to wait until early September . I will meet the surgeon on Thursday and try and have further clarity on timing. I am less concerned by the wait now, as the fat grafting has made the TE less uncomfortable which I am very grateful for!
When I asked the PS about the vaccine she said that fat grafting causes inflammation, and that the vaccine would also trigger an inflammatory response. Having the two close to one another would be "a lot of inflammation" hence the recommendation for 3 weeks gap between the two.
Enjoy the cabin Isee, and best wishes to everyone,
0 -
Howdy all,
I hope everyone is doing well.
I had my consult with the radiology oncologist today. I was given 4 options, observation only, 16 radiation treatments, 1 week radiation treatment (accelerated), and or hormone therapy, probably Letrozole. I'm leaning towards 16 radiation treatments... this is the treatment that I selected 10 years ago when I had the invasive tubular carcinoma on the left side and I have not had anything suspicious visible on any scans to date since!
The oncologist was concerned that 2 of the 3 lesions on the right side were not removed, and stressed how important it is to watch these carefully. I have an MRI scheduled in September as part of my BRCA2 high risk surveillance program. She also said that after a papillary lesion is removed, reoccurrences are a risk in the same location....which is why I'm thinking the radiation might help protect against this.
I have a week to consider my options and will have another appointment with her on May 14.
Anyone else have any thoughts on this?
0 -
Hello emBri79,
I was diagnosed with tubular 11/17 & you might want to read my posts as well as some articles I attached. After doing extensive research on tubular (probably kew more than docs.), and given small size of mass (1.2cm) I opted to do nothing but surgery. Declined lymph node removal and meds. Explained in previous posts that this was a gamble I chose to take. Wouldn't have been able to deal with side effects of medication, etc.
I have had normal mammos since. Check out the articles I attached & let me know if you have questions. Good luck!!
0 -
Hello everyone!
Benaya, I wanted to thank you for the links you posted in the past – they are very interesting, and ultimately reassuring as regards tubular BC (as much as one can feel reassured dealing with cancer).
Isee, it's good that you have options, although I find sometimes it's easier not to have any when it comes to health, if you know what I mean? Did the RO lean towards one or the other?
You ask if we have any thoughts. Obviously each one of us could give a different response. But if I try to put myself in your shoes I know what I would not do. That is the wait and see. That would be the hardest for me to accept. I have been on letrozole since July and despite the SEs I find it bearable so I would not oppose adding it to the mix. On radiotherapy , I guess the fact that you had it in the past is an important element, as chances are your body will react the same way it did in the past.
Radio was not offered to me after my MX. I read enough here and in scientific articles to know that the assessment of pros and cons that underlied the choice by the team is reasonable, but I continue to have the lingering feeling that there is a very concrete risk of local recurrence due to that. I would probably be struggling with a variety of consequences from the radio had I had it last year, but I would feel more serene regarding the future cancer-wise.
Best wishes with your decision on this and everything else !
0 -
Howdy,
Thanks for your thoughts Mountainlover...I have decided to to the 16 radiation treatments. They start next Thursday June 10. Saw my oncologist last week for the radiation setup and she gave me a letter saying that I should get my second covid vaccine without having to wait as she wants me fully vaccinated before radiation starts. I was told that side effects would be much worse with the second dose, but so far all good...and I had it two days ago.
Anyway I hope you are all doing well! Take care0 -
hello everyone, hope you're doing well.
Isee, how is the radiation going? Did you have any SEs after the vaccination in the end? I was a bit off after my second pfizer shot (fatigue mainly) but was back to normal in 6 days or so.
My first post-dx mammo+us is coming up in just over 2 weeks and I keep my fingers crossed. I am also waiting to have a date for the final implant exchange but hope to have some "real" holidays first, It will be the first time in 2 years!
All the best
0 -
Howdy all, Mountainlover...it sounds like you have a lot going on...I hope it all goes well! Fingers crossed for you and where ever you are vacationing I hope you have a relaxing, wonderful time!
I had my second Moderna vaccine on June 1...so it's more than 14 days ago...so I'm considered fully vaccinated here. I guess that is as good as it gets under the circumstances. I'm still being very cautious, would hate to catch it now and spread it to family or others even though I'm unlikely to get sick myself. I think I mentioned that I had flu like symptoms with the first vaccine...for a few days and was tired for awhile...hubby just had a sore arm. With our second shots, I had no side effects...I actually think I felt better than before it, but hubby got quite ill and spent 2 days in bed. Strange how everyone seems to react differently. Wonder when they are going to suggest a booster, cause I'm sure there will be one...I just had my 6th radiation treatment this morning. I am getting burnt a bit..but not too bad...one more day and then I get to head to my home town for the weekend. I finish on July 2 after 16 treatments.
I recently purchased a new ebike...fun fun fun...looking forward to riding it this weekend!
Have a great day everyone and take care!
0 -
Update...
5 what a number 5 years or 5 minutes. I have reached the end of my 5 years under the care of my surgeon. I walked out of my last mammogram and exhaled. For 5 years I have been thinking as my yearly mammogram approaches what if...What if they find something? What if... What if I get a call back? 5 years ago I was in a work meeting and my family dr called to tell me the news. I could not tell anyone I had to continue the meeting. I kept my news private for I am far too sensitive to the facial expressions of others. I did not want to explain what Tubular beast cancer is and what are my plans for treatment.
What I looked for when I first got the news is for anyone to say it will be alright! You made the right choices for your body. You made the right choices for treatment. You are going to make it. Will breast cancer be the first thing I think about each day or when I get a breast twinge? No, it is moving out of my mind space and I have made rooms for other items. Year one I could tell one anything about tubular cancer from the wonders of the web. Each dr appointed I felt I needed to come over prepared. I had print outs and read studies and talked to my dr friends. It was just overwhelming!
As much as they removed the cancer from my body I have removed it from my mind. The panic of not knowing enough is gone. I am no longer reading up on studies and treatments. I have relaxed. I have jumped out of the cancer race car and parked. This is what I wanted to read when I got the call and typed in the words breast cancer 5 years ago.
0 -
Congrats on your 5 years Brightsocks!
I had radiation treatment #9 today...only 7 more to go...for cancer on the other side after 10 years.
Always good to remain vigilant lol.wishing you a cancer free rest of your life!
0 -
Brightsocks, such a nice post to read for someone like me, who's just reached 1 year from diagnosis! Thanks for sharing and all the best!
Isee, how is the radiation going? You wrote you were getting burnt a bit, I hope it's not too painful ! But the end of treatment is coming soon so, hurray!
Take care everyone
0 -
Howdy all,
Mountainlover, finished #16 this past Friday...YEAH! So glad that is over and done with...I'm a bit burnt and a bit fatigued...but not to bad....looking forward to enjoying summer now! I hope you and everyone else is doing well!
0 -
Pretty quiet out there...How's everyone doing these days? I'm feeling great...seem to be very few side effect from my radiation this time which is awesome. When I had it 10 years ago, I was exhausted for a very long time.
0 -
Hi everyone, I hope you are all doing fine.
Isee, it's great to hear radiation went so well !
I am fine, I was able to enjoy a good summer break in my home country including some good hikes in my beloved Alpes, which really boosted my energy and help me recharge mentally, too. Travelling has been easier thanks to the Covid vaccines.
My body has gradually adjusted to the implant, also thanks to the fat grafting in spring, I sleep better and my shoulders are nearly back to normal. The anti-hormonal therapy comes with side effects but they are very bearable now. The first mammogram since I had surgery last year was uneventful, and I am proud of myself for facing it in a relatively composed manner.
Going to the seaside for the first time since mastectomy was also an experience. I found some beautiful, "normal" swimwear that I could wear at the beach which was unexpected and made me feel somewhat emotional. I also discovered that I could wear most of my pre-mastectomy summer clothes, So, even if I am still with temporary implants (the dreaded expanders) it looks like the surgeons did a good job so far. Unfortunately, I have not been given a date for implant exchange, yet. Covid has not helped, and it looks like they are overworked at the hospital overall. It will be so good to put this reconstruction process behind, but it has been worth so far for me.
All the best
0 -
WOW...great news Mountainlover, sounds like your summer was very nice...so glad for you! Hopefully they will be able to finish your procedure soon!
We have been back and forth to our cabin a few times...but life has been pretty uneventful. We live in an area that it seems the rest of the country likes to come to for holidaying so our covid numbers have gone through the roof. It will be interesting to see if our numbers drop once school starts and people stop coming here as much. I am afraid that the Delta variant is a game changer.
I'm waiting for an MRI appointment to be given to me...supposed to happen in September. Hopefully it is not delayed...I'm all about frequent surveillance!
Stay safe and healthy everyone.0 -
Hello everyone, I hope all is well.
Hi Isee, have you had a date for your MRI, yet?
I haven't been on these boards much for a couple of months as I got so impatient and frustrated at not having a date for the last step in reconstruction that I felt I needed to focus on non-cancer issues as much as I could. I finally got a last-minute call for implant exchange + a second round of fat grafting on 20 October and I am now recovering at home. Luckily there were no complications this time, I am finally drain-free and so far everything seems to be healing as it should. Fingers crossed!
Other than that, Covid cases keep increasing here in Belgium, there are a number of clusters in schools, we have been spared so far in my family, but we all keep our fingers crossed. We adults are vaccinated but the kids are still too young for that. I was offered a third Pfizer shot as the 2020 cancer diagnosis puts me in a vulnerable category here. Following advice by the PS I will have the third dose once I'm at 3 weeks from surgery. The Belgian authorities have recently introduced Covid-pass requirements in restaurants and other public places, I hope that we will see the effect in a week or two. Having to be hospitalised in Covid times is no fun, I am so glad that this (hopefully) last surgery is now done !
All the best!
0 -
Hi everyone. I hope you are all doing well!
Mountainlover...great news. So glad you are finally on the road to a more normal life with less waiting and worrying no doubt. Awesome that your reconstruction was successful! GONGRATS!
I am still waiting for my MRI date...the oncologist also wants me to have a mammogram asap...I guess having both gives more information than just one or the other. Hopefully all is good. I would hate to deal with this sh-t again this year.
I was just offered and had a 3rd covid vaccine. I was a bit surprised, but I guess the radiation last June or maybe just having a cancer, not really sure why, puts one into a more vulnerable group. Regardless, I was thrilled to get it. I sure don't want a bad case of covid. Our numbers in British Columbia are pretty high. Many in the northern part of the Province are not being vaccinated. Consequently their hospitals are overwhelmed with many serious covid patients so they are being flown to hospitals in Vancouver and on Vancouver Island. This means that many who live in our areas who are needing treatments and surgeries that are not covid related are not being looked after. Very sad and super happy that my event was last year and not this. Knock on wood....
Schools here have many cases I'm told, but apparently there is not much testing going on and notification of possible exposures is iffy. I can't believe that we have been dealing with this for almost 2 years. I can remember thinking about booking a cruise back in Dec. of 2019 and thinking we should wait and see what happens with this strange illness that is being talked about in Wuhan. So glad I never booked a trip back then.
Anyway, my fingers are crossed that we can get a handle on this challenging situation and all get back to enjoying life as we should be able to!
I'll post when I get my MRI and Mammogram results!
Stay healthy all!!!
0
