Large tumour survivors
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Hi Ladies!
Any of the large tumor survivors achieved Pathological Complete Response (PCR)?
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Kkmay, I have six days of radiation left, the rest of the year of Herceptin so I'm not a long term survivor, but you can see my in my stats below my tumor grew quite large shortly after diagnosis. The pathologist described finding a tumor bed and the clip placed at the biopsy--no cancer cells in the node or the breast (PCR). When I was going through treatment, I read of these stories and hung on with hope and prayer and hope it encourages others.
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I was diagnosed a couple of weeks ago at age 32with a large high grade tumor. Started AC on Tuesday. I’m so glad I found this post, it is very encouraging to hear your stories!
Beesy- I’m from Houston too
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Thank you ladies for sharing! Wishing you the best luck in your journeys!
As of the size of the tumor, I read somewhere in the community that a MO told her patient it doesn’t matter how large your tumor is or how many nodes are involved. What truely matters is your response to treatment! You could have a huge tumor and many nodes involved, yet responsd very well to treatment.
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I was just diagnosed with 8cm IDC tumor in right breast.... 12/31 lymph nodes positive. Scared to death.
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mpv459 you will find this an incredibly helpful community of folks who have been there & want to help you. I know you are scared but the cancer was found now which should give you great comfort-if it doesn't right now I imagine it will in time. What are you needing from this community right now? How can we best be here for you? Btw, I had Stage 3c, was first diagnosed 1/25/2018 and I am still here! Nearly a year after my mastectomy now preceded by 5 mo. of chemo & followed by 6 weeks of rads.
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mpv459, I am sorry you have to be here, but you have found friends who know what you're going through and can bear your burdens. When I was diagnosed, I found this site and never participated. But boy did I benefit from it! I first read about icing hands and feet during chemo to prevent neuropathy (highly recommend). I read stories of large tumors melting away and it gave me great hope. Large tumors are often high grade (aggressive) and they generally respond to treatment. Note I posted just a few entries above, and in August when I was diagnosed, I could never imagine feeling as well as I do today. You're still in the worst part where there's no plan. It sounds ridiculous, but it really does get better.
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I have already had my right breast removed and will begin chemotherapy the beginning of May. I wake up frozen in fear and go to sleep the same. Terrified of it spreading because of the large number of lymph nodes and the size. I feel like I cannot escape the feelings of dread and terror about what is going to happen to me. I want to be able to go on and enjoy the days that are good but I don't know how to escape this and move on with my treatment and life.. Any suggestions??
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Have you got your treatment plan, MPV? Sometimes that alone is a relief, being able to plan and take action. If you are newly diagnosed there may also be usefulness in seeking a second opinion. Do you like exercise? That can help. The fear is there but it gets smaller when a plan is in place and you are acting on it. If anxiety lingers you can ask your MO for ativan, which a lot of them prescribe for this.
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mpv459, Everyone here is correct, getting a treatment plan in place can help you feel more in control. This is not an easy time, but people do find things to get better with time. Doing things to take care of yourself, as the others are suggesting, can really help. Take walks if you can, get outside, keep up your routine if possible. Anti-anxiety medications can also be helpful, as well as talking to professionals.
We all understand where you are. We're all here for you.
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I had a 7cm tumor and did Neoadjuvant chemo. Pathology after BMX showed no cancer left in the breast tissue. I’m not a long term survivor (yet!) but it is possible for chemo to totally obliterate even the large tumors.
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Thank you for the reassurance. Since I have already had breast removal and lymphnode dissection how they determine that the chemo is working??
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Well, that's trickier when it is removed. Bt they can analyze the cancer in your biopsy and make guesses as to the correct chemo. Thats something you can ask about!
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MPV, my mother had breast cancer 25 years ago when they were just starting to use chemo before surgery. She still had nine positive nodes after chemo and she not only survives, but also is thriving at 81 years old. There is a woman on this site by the great name of Lottanodes, who had 22 positive nodes out of 23! This was in 1995 and she had the same chemo regimen as my mother did. She is alive and well! What I'm trying to say is that it's easy to be horrified by our bad numbers--believe me, I know. For now your job is to tell your doctor you'd like to start chemo immediately--I told my doctor I wanted chemo yesterday! My doctor got tired of me telling him that, so he finally started sooner than planned, and they made it happen within an hour! I would say the hardest part of being a cancer patient was advocating for myself. If you need a pushy, hard-to-stop person there with you to help you, by all means ask a friend to help you. If you happen to live in Houston, I'd go with you and drive your oncologist crazy too. I'm serious!
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Beesy you are so right. A tough relentless advocate is so important. A "don't take no for an answer" person. THE hardest part of cancer is having to be this for yourself, so relentlessly, when feeling ill!
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Thank all of you for the positivety.. It has been a rough few weeks. She is waiting for my surgery to fully heal before starting chemo... Port in in two weeks and then beginning. Question for you all... I have an oncologist in a hospital who I like and feel will do a good job but it is a 50 minute drive from home. There is also a well known oncologist who is only 5 minutes from me and has a good reputation. I am trying to decide which to use. Any advice.
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Could you get both oncologists’ opinions? Then if they recommend the same treatment plan, go with the one that’s closer.
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I'd meet the closer MO and see what you think of that one... Avoiding the drive would be a big plus....
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MPV, I totally agree with talking to both options and seeing how their plans compare. I also personally place on high value on MO’s at research facilities/ who are involved in research. My bc was triple negative which has a lot of research going on but I think I would feel that way regardless of what type of bc was on my diagnosis.
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So glad I found this forum. I had what I thought was a 5cm tumor. The surgeon freaked me out at my consult about the possibility of it having spread given the size. Just got the results of the bone scan and CT scan. All clear. I had an MRI done which puts the tumor size at 7.2cm. I had psyched myself up for surgery, but now it looks like I might have to have chemo first to shrink the tumor. I don't know why, but this has totally freaked me out. For those of you who had large tumors, did you have to have chemo first?
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I did have chemo first. I'm not sure if it was a good decision or not. While my tumor was definitely shrinking by the feel of it (we didn't do imaging during or after chemo and it wasn't palpable at all after 4AC and 4Taxol), I still had most of the tumor left in my pathology and 5 positive nodes. I know ER+/PR+ don't often have a pCR, so I wasn't expecting it to completely go away, but I was hoping for at least some reduction. I had clear but close margins. I remember sitting in the office at the beginning of this whole ordeal saying 'I want it out, now.' and my nurse navigator talked me into chemo. If I could go back, I probably would have asked for surgery first...maybe? I don't really know.
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Lexica, I very much want to have surgery first. I just really hope that my surgeon says that he’s on board with that. At our initial meeting, he was talking about surgery first and then for some reason at our last meeting, he suggested chemo first. I asked why and he said it might then be possible to have a lumpectomy. I did say that I didn’t care, that I wanted a mastectomy and wanted to go ahead, but he set up an appointment with the oncologist anyway. I’m just keeping my fingers crossed that he says I can go ahead with surgery.
The size of this thing is really scaring me and I think I’ll feel better once it’s out, even if I have to do chemo afterwards
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I had my surgery on the 1st of April with chemo and radiation to follow. So glad to have gotten rid of my drains today.. WOOHOO...I know I have a long way to go in this journey but getting those off me was the best feeling since I began traveling this awful road.
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Mumoftwo, let us know how it goes. Sometimes it can be hard sitting in a room with the surgeon or oncologist and pushing for what you want. That's something we all need to know at the start of this...listen to the doctors, but you MUST be your own advocate. I've had so many experiences where they were treating my disease 'by the book' and not considering the person affected by it...me!
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Thanks, Lexica. I have felt like all of this stuff is happening to me with me having no contro, and as much as I trust my surgeon and oncologist, I did feel at my appointment two weeks ago that my surgeon was not really hearing me.
Anyway, I was unequivocal about my preference yesterday and my surgery is happening May 2. I feel so relieved that all the tests are done and that this thing willl be out soon.
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mum, how did your surgery go?
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This is so weird. I swear I posted a reply to your post, Lexica, but it seems to not be here. Maybe I wrote it and forgot to press Submit!
The surgery went okay overall. The drains were a pain, and I ended up with some swelling (which fortunately got sorted out by a great physiotherapist recommended by my GP), but it was manageable. Psychologically, I felt so much better after the beast was out (7.6cm!). I’m glad I had the surgery first. Sadly, I had a very cancery lymph node. So I started chemo last Tuesday. It looks like my 2019 is basically going to be just about fighting cancer
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Good to hear from you - yes, I feel like the drains were the worst part! I totally get it feeling like a relief when it is out of you. One lymph node is not terrible - are they recommending radiation, too? Hopefully, you can get away without that and you can get part of your year back. I know 16 weeks of chemo seems like forever, but it truly goes quickly. Did they do any recon during your surgery or are you delaying that? I had delayed reconstruction (pre-pectoral implant surgery scheduled in two weeks) and I'm actually kind of dreading having boobs again... it's been nice not having to worry about a bra, lol!
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Unfortunately I’m going to be having radiation too. I get to have all the fun.
I’m not doing any reconstruction. It’s been challenging with the one boob, but I’m getting used to it. Funny thing is that my existing boob is the one that really annoys me now because it’s too big for me to go for walks without a bra. Kind of wish I was totally flat
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4 cm on mri but sx found an additional 3cm hidden. So 7 cm. I don't worry if I'll progress. Nothing good comes from worrying. If it happens then need to deal at that time.
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