I have been on this Forum now for a few months since the dx of invasive ductal bc in February. Have had a core biopsy done, nodes clear, MRI, all scans, etc. Have just finished 4 cycles of AC; will be going on Taxotere on 5/30.
Visited my onc surgeon yesterday for the midpoint checkup and found out that my suspicions were half correct. I thought the tumor was growing, but in fact, it has had a very poor response. The onc surg called it “non responsive.” It shrunk a miniscule .26 cm. Not much. However, the good news is it didn’t grow. The onc surg also said that sometimes folks who do not respond to AC, do respond strongly to Taxotare (or the Taxanes). She did not want to rule out these sessions but to proceed with them. She offered to see me after two chemo treatments instead of watiing till the 4th one was done, which was very nice.
Because of this had a lymph node biopsy yesterday to make sure it had not spread, and also had another ultrasound. I will find out the results from pathology next week, either Tuesday or Wednesday. Considering this is Memorial Day weekend here in the US, probably the latter.
What now? From what the onc sug said, if the LN are positive with cancer, then surgery may happen sooner along with the LN removal (is this a WLE?). Then chemo again (it cannot be skipped) and then rads. Otherwise, the upbeat note is to finish the chemo, then surgery, then rads. I joked with the Dr. doing the biopsy that wasn’t it pathetic that I should be looking forward to JUST chemo!
But if it turns out to be the case, I would like to know how you all dealt with it, what the process is like and how you emotionally adjusted to this change in routine.
Here’s to the very best results…I just like to be prepared.
Emily
xxx
HI Emily
Glad to hear from you
I responded really well to AC my tumour was 6cms to start and reduced to 2cms but not so to Taxotere and it atarted to grow so maybe we are opposite and you will respond better to tax.I was due to have 4 tax but as my lump was getting bigger I only had 3 and they operated within a week.
For me that was the best thing as I knew it would be taken away from me it was due to be WLE is a lumpectomy but as it had grown I had a quandrondectomy(spelling) which effectively took a quarter of my breast and a 4cm tumour and they took 21 lymph nodes, which were thankfully clear and I have been told there is a high chance that the cancer will not return so will begin rads hopefully on 9th June.
Although some of the chemo was not as effective I do feel that what I had did the trick so to speak and as the docs are keeping an eye on your progress I hope you have a good prognosis.
Take Care Emily, keep strong
Mary
xx
Mary -
I am really glad that AC worked for you. It started well for me, but I guess it was resistant. Well, part of my heritage is stubbornness, so I shouldn’t be surprised!
It helps to know that you have gone through this, that some of your Nodes are removed and you are progressing. The percentage is great ! I just need to get accustomed to it, I think. And learn more about the other regimens.
Emily
xxx
Hi,
Emily, I share your worries… we are in the same boat as far as treatment is concerned I have one more A.C.before Taxotere and I worry that although my tumour is reducing I thnk, when I feel it lying down it still feels huge! I think it is wonderful that you have had a lymph node biopsy now and that you don
Sorry!
and that you don`t have to wait until surgery to find out …I am finding that the hardest, not knowing what lymph node involvement I have until September, October when I will have surgery!
I pray that you get a good result!
My B.C. said Taxotere is wonderful and until a couple of years ago in this country people were fighting for it because it wasn`t available on th National Health, so we must think positive!!
I try so hard to take a day at a time but sometimes seems impossible.
Mary I am so pleased A C did the trick for you and things are looking good. When do you go on that well earned honeymoon? must be soon if you are starting rads in June.
Am off to play golf now, it`s just a beautiful day,
Take care,
Lots of love,
Janx
Emily Jane
Good luck with all the next set of results, you really have a lot to think about at the moment. You sound so calm? With me I think I have a lot to think about and then things sort of get taken out of my hand because one of the ‘experts’ pushes /encourages in me one way and I just go along with it. I guess they see people like us every day and have a much bigger picture of where we are all going. It is always worrying when something is changed because we wonder if that means something is wrong but I think they sound really proactive with you and that is positive because they are changing things to suit your individual case. Sounds like you have a good team there to me.
I am on a different route from you so not experienced with your situation,but also diagnosed in Feb, surgery first and only just had first chemo, will continue until end Nov then start Radio. So will be around quite a while to keep you company.
Hugs
Lily x
Hi Jan
Nice to hear from you.I hopefully start rads on 9th June got planning session next Thursday, but I have an infection in my wound which I am getting dressed every day by district nurse so I am hoping it wont be delayed.They are giving me 15 treatments so it will end on 27th June and we go on 30th.
Take Care
Mary
x
Jan-
Yes, the waiting is the pits. It is so like a time bomb…will it explode, will it deflate, will I ever know? Enough to drive you crazy and yet we have to cope, I guess. I bet playing golf and being outside and just getting away from the reality of it all is greatly therapeutic and fun. Don’t forget the fun part! Good for you… Thank you for your good thoughts and prayers. Back at you, girl. We are very much on the same time line…so let’s help one another be strong too. I do believe that we can get through this!
Mary –
wow, that’s cutting it close!!! you are living on the edge…a part of you must be somewhat frantic…
so take some time to relax, forget about the wound for a few hours, and throw yourself into planning so
when you find out you are healed, you will be able to pick up those bags and escape!!!
Lily -
thanks…I appreciate that. I know our treatments differ, but hey, we both have bc and we are both woman, so that is alot. The stress is the same, no matter the treatment, and the need to adapt and cope. This is really such a roller coaster…I wish you the very best, sweetie.
Emily
xxx
Thanks Emily
The downside will be if they cancel rads I will have them after my hol, but my onc has been really supportive and as it was her who asked us to cancel in the first place she knows how much this means to us.
What will be will be - - que sera sera - oops a bit of Doris Day there ladies.
Take Care
Mary
xx
Hi Lily
I know what you mean about the experts - we put our trust in them to ’ make us better’ but it is a huge life changing experience and yes we seem to be pulled along at a fast rate sometimes without seemingly drawing breath.Our only hope is that they get our treatment right -but be sure to stop and ask questions.
Take Care
Mary
xx
Well, the report came back. Didn’t hear from my onc surgeon till Friday morning, the day I was to start Taxotare. She said that there are cancer cells in the lymph nodes and it would def be a mastectomy.
She ordered new bone, cat, and mri scans. And I am to see her after two treatments of Tax. She called my oncologist before me and they agreed I should continue with the Tax instead of having surgery immediately. My first thought was to cut it out and get rid of it before it spreads, but I guess that is not the concern so much as the micro-cells of cancer that are in my body. Nothing has metastatized I just don’t want it there anymore.
You have all gone through this…but it is new to me so forgive me if it seems overwhelming. We went from listening to the surg to the oncologist who put a much more positive spin on it. He thinks we may have gotten the cancer while we didn’t get all of the fiber in the tumor. I think of this thing as a solid ball of cancer, but I guess that isn’t the case at all. He said that there was scarring…and what I felt is not necessary all cancer, but fibrous. In either case, I want it out. So the compromise is for me to check in with the surg again after the second treatment and see what’s up.
I am really maxing out here on raw facts. If I can just whine for a bit. I miss my life, my hair, my eyelashes, my nails, my energy and my buoyant self. At the same time, I realize how lucky I am to be a woman with a supportive husband, with the to pay for health care, with the luxury of having two doctors to consult and a job that will pay me for 40 hrs a week although I only work 15. I KNOW I am a fortunate woman.
So I will hang in there for another 6 weeks till we get a new word and hopefully again for another 6 weeks before there is a light at the end of the tunnel. I may not be able to see it now, but I am sure it is there waiting for all of us.
Emily
xxx
Hi Emily,
When I read your post, I realised what wonderful treatment we are having and how well we are being looked after. Although traumatic we certainly are in good hands!
I am just 3 weeks behind you, I have my last A.C. today. At the beginning of my treatment my plan was 4-6 cycles of chemo before a mastectomy so really couldn`t understand why they changed it to 8 cycles as I was always going to have a mastectomy.
My onc said like you, they are concerned with the whole body,it`s better to do as much as they can before surgery than afterwards.
I have to admit its going to be the end of September, October when I have surgery which seems a lifetime away! Sorry forgot…we have to take a day at a time!!
I will have a good talk to my onc today I have the same concerns as you, re. is it working! Its good that you are being screened through Tax.
Ah well, no golf for me today, out tonight with friends for a chemo flavoured dinner!! ( must be mad)
Hang on in there,
Take care, lots of love,
Janx
Emily,
Just read your post, sorry things didn’t go exactly as you’d hoped but as you have said your onc seems positive.
I haven’t started chemo yet, we did it the other way about, surgery then treatment. My lump wasn’t too big at 25mm and there are 3/10 nodes involved, hence the chemo.
I am still waiting to here about appointments with the onc, was signed over from the surgical team 2 weeks ago, starting to get tetchy about it, want the chemo started so I know what to expect and start to deal with it.
Sending you loads of positive vibes, although you are really strong so don’t really need them.
Loads of love
Lisa
xoxo
Jan - good luck today with your last AC. It was good to be rid of it…but sorta scary to be on Tax too. I hope all your questions are answered…I had many. And found that we can live very well without lymph nodes and it is done all the time. I guess it seems like it is the end of the world when really, we can adapt amazingly. The other point my onc made was that once surgery is done, it will take longer to heal and you can’t be having chemo right after surgery since it is so toxic. Actually, it makes sense. It would be nice if we could create some sort of dye to alert us to how the chemo is acting/not acting!!!
Lisa - thank you. I appreciate your positive vibes. And really don’t forget I am a writer…I can write up a storm either way but am straightforward here. I am much more fragile than it seems. I think we all are. You must be very impatient…it is the hardest to wait, wait wait. Hope you get the appointment soon.
Emily
xxx
Emily,
Chemo went well but had a very strange day! I saw the oncs no 2 who examined me and told me my tumour had disappeared!! Now I know I can be a little dim especially on chemo days, but I know my “lump” I check it out hourly!!! I obviously questioned him and he said it wasnt a tumour just an abnormality?? I gave up but didnt get excited as I know my body.
Five minutes later my lovely onc called me in as Im sure he couldnt believe his collegues findings and they both examined me together… sure enough there was my lump!!! It was like a comedy act!!
He was pleased that I had responded well to A.C.but really wants me to go on to taxotere,
He said the reason was not that they are concerned about the progress that I am making, but at this stage taxotere will be much better.
I don`t know as much about detail as many people who use the forums do, but it freaks me out a bit when they talk about the extent of my cancer etc. Which is hopefully still confined to the breast with possible lymph node involvement.
All my life I have looked after myself always had lots of screening, good diet and loads of exercise, so how do these things happen? Who knows!
Hope you are still coping with the tax o.k.
Dinner was good, chemicals still hadn`t kicked in!
Of to golf tomorrow , thank goodness back to normality!
Take care,
Love,
Janx
Jan-
what a day you had! It is always good to listen to yourself so good for you – it probably saved your entire psyche that you didn’t go wholly into their mode. Sometimes too good to be true is just that, too good to be true!
My onc explained to both me and OH that he and my onc surgeon both wanted me to proceed with Taxotare so they could attack the microscopic cancer cells in my body. Not metastatized, but there. He said he could guarantee that the cells were originally in my lymph nodes…just not detectable. In short, he was not worried or alarmed. THAT made me feel good all by itself.
We are all different. Like, don’t we know that now! But it might also help you to hear the explanation I got when I rallied that I wanted this lump out. LIke, get rid of it! The onc said that the tumor was partially fibrous…not a solid ball of cancer. That the cancer created striated or scarred tissue and THAT could be part of what i was feeling. For me, it felt as though it was growing. He said this was not the case. It wasn’t shrinking, but it wasn’t growing and Tax was the thing to deliver the punch (my words…).
So take heart. If you think about it, it makes sense. Deliver the punch to all of body before you have to undergo the surgery – where the body will be weakened. I am going for new CT and Bone scans tomorrow so we will see what’s up.
I am so happy for you that you have golf, and some semblance of normalcy, to help you along. See, it’s listening to yourself again!
For me, I am taking all my anxious energy and whirling through the house and clarifying, clarifying, clarifying. Ridding self of al junk and extraneous stuff…its is GREAT therapy and you can actually see the results!!
Have a wonderful day, sweetie.
Emily
xxx
hey Emily…
just hey…
if you have a porch can i sit down???
I still don’t understand whether it is a general medical decision to do chemo first and then op. I think Lisa is right when she says that in the UK,we generally do the op first and then chemo but i know there are peeps on BCC who do have chemo to shrink tumour first… hey… it’s one of those things i guess! My lovely oncologist said that his job was to make sure i die of old age. I see one of his senior registrars at the moment because as much as i like him… I am well in the cancer scheme of things and others need him more. So the senior reg says of course we don’t know if you ahve an cancer cells left but we do this to try to make sure that we get everything. I envision myself as wearing a belt, braces, safety boots, a crash helmet and so on…
I feel i have to go with it all but look forward to it being over!
I hope that all is good with people on this thread today
Jennifer xxxx
like you i am lucky that i can work part time but get paid for full time… i am struggling a bit now because i am so weary
Hi ladies
I had chemo first to shrink tumour as although it was an early cancer it was deemed to be big at 6cms, shrunk initially to 2cms but began to grow again and a 4cm tumour was removed.
Take Care
Mary
xx
Hi All,
Emily think maybe I will follow suite and start clearing things …I have used up loads of energy clearing the house and garden but my, you should see the attic!!
I am also debatiing whether to go the whole hog with the wig … I started medium brown, then bronze brown and then blonde streaks and then dark blonde…I have always dreamed of being blonde so think I will go even lighter… nows the time!!! Great to have a choice in the morning though… my grandchildren think its great..I tell them its magic!! I can
WHOOPS SORRY!!
I can`t imagine going back to the real hair thing so boring!! By the way I get my wigs from The Wig Salon in Florida, they are less than half the price here and the same make!!
Talked at length with a friend yesterday who was a brilliant b.c. for 25 years and she said the downside to neo adjuvant therapy was psycological, as you are still carrying the tumour around.
She said the trials, which are all quite recent results coming in all the time, are showing that chemo before surgery is giving better results. I love to talk to her , she is so down to earth and positive, just deals in facts, she is an inspiration!
Mary, how are the rads going, I believe the treck to Clatterbridge is a bit tough every day…is that what you are doing?
Have a gret day all… I am just of for a wig trim ( Blonde steaky one a bit too thick for a 61 year old!!)
Take care ,
Lots of love,
Janx