Calling ladies with 4+cm or larger breast masses
My daughter has IDC and it started out at 4.3 cm according to the MRI. She’s had 4 DD A/C treatments every other week and has had 3 weekly Taxol treatments thus far.
The surgeon said she felt like her mass had grown during the A/C treatment. The oncologist confirmed this and they felt it was then 7-8cm and inoperable unless they got it shrunk significantly. The 3 Taxol seems to have shrank it somewhat feels about the same size as when she was first diagnosed so about 4.5cm.
However the oncologist said if it’s not down enough to do surgery he’ll stop the Taxol after the 6 treatment and start the ovary suppression meds. Then we’d have to wait for that to shrink it. I said couldn’t it just keep growing and go out to other parts of her body and he said that’s a possibility. So my daughter is just wondering why they can’t do the double mastectomy and get it out of her. He said there’d be trouble closing the wound because of the size that will be taken out.
We’re looking at having him refer us to Vanderbilt for a second opinion if it comes to this.
What I’d like to know is how many of you had large iDC masses removed and was it difficult or have to be done a certain way?
HELP!! We’re praying the Taxol will work but want to be prepared if it doesn’t get it down to an acceptable size.
Sammi
Comments
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Sammi,
So sorry about your daughter’s diagnosis. What a caring mother you are to come on this board seeking information for her. She is blessed to have you in her corner.
I don’t quite understand the surgeon’s reason for not performing the double mastectomy? I was diagnosed with ILC and had 9 CM tumor. I had a mastectomy and there was no issue with the wound not closing properly. I would definitely consider getting a second opinion.
Cyn
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bump
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The problem could be that they remove not only the tumor but also extra around the tumor so they can be sure they got it all. If you only have small breasts and a big tumor depending on where the tumor is located there may not be enough skin leftover to sew the wound up which would then mean skin grafting and the like would be required which also means more opportunity for infection in an already compromised from chemo immune system. It may be that the tumor responds better to the hormone treatment than the chemo but it also never hurts to get a second opinion.
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Sammi-- I'm sorry your daughter is wrestling with this beast. I understand her feelings to just get on with surgery to get the cancer OUT. But if there isn't enough tissue in the chest to close the incision without wide margins that don't have cancer cells, there's a risk that the skin in the scar will grow more tumors down the line.
I would also recommend a second opinion, which is a good idea for anyone with any cancer diagnosis, no matter what the original physician's treatment decisions. Vanderbilt would be a good place to go. Does your insurance require a referral for a second opinion? If yes, just get the process going. If no, call Vanderbilt yourself and make an appointment. Have your daughter gather up all her records--pathology report, treatment details, labs, MRI and CT reports. A reviewing doctor will want to look at everything.
Gentle hugs from California!
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I had an 8cm X 6 cm tumor.......I did surgery first. My oncologist liked doing surgery first and then chemo as he felt chemo worked best with the least amount of tumor burden.
As others have already said.... I would quickly get a second opinion.
Jacqueline
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Thank you all so much for your replies and input. Although my daughter is small she has good sized breasts medium to large C cup. I myself am too heavy and actually had a reduction years ago as I was DDD and 5’1”.
Definitely calling insurance company tomorrow. We’ve already spoken to her oncologist and he doesn’t have a problem with referring her out for a 2nd opinion.
Blessings to you all!
Samm
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we went to Sloan Kettering. If you’re getting a second opinion, Anderson or Sloan would be good options as well. The surgeons at MSK are pretty fearless.
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Hi Sammi,
I had a 9cm tumor removed from my barely-a-B-cup chest. I chose BMX without reconstruction, which was done prior to chemo and radiation. I don't understand why they would call your daughter's tumor inoperable. Getting a second opinion is a very good call. Your daughter is so very fortunate to have you in her corner. Take care.
Lindsay
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Sd: That's too far away from us unfortunately. I also don't think her insurance would cover them. Vanderbilt has a great Cancer Center and has specialist for each type of cancer and surgeons. I think we'll all feel more comfortable with a second opinion.
Lindsey: Thank you. That’s exactly what I’m thinking. It just doesn’t make sense to us
My daughter is 30 and lives with us right now due to other medical problems. So it's up to us to really help her get through this. I appreciate your response however.
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My tumor was over 10 cm and they were able to operate. I was a c cup as well with very dense breast, so a harder surgery. I spent 6 hours on the operating table, maybe that is why the surgeon doesnt want to take it? You said she has other medical issues, maybe some of those come into play? 6 hrs was removal of tumor and level 1 and 2 axillary. I also had intramamary and rotter nodes that shrunk during chemo and they decided to leave alone, because it is a harder surgery and can cause major complications. I only add this, because I wanted those cancerous nodes gone. Got another opinion and got the same answer.I spent another 30 minutes getting a tissue expander. Please get another opinion then you will hopefully know why the recommendation is what it is. Good luck!
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Go: Thanks for the information. The medical conditions are not physical, so I pretty sure that’s not the situation.
Tomorrow she goes in for the 4th Taxol treatment so we’re going to have her oncologist get the referral to Vanderbilt going hopefully they’ll be able to fit her in soon.
The steroids are definitely reeking havoc on her emotionally. We’re hoping they can reduce it a bit
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Mine was over 6 cm. I did surgery first. It felt good psychologically to get rid of it. I just wanted it gone!!!
Then - did chemo and rads... I honestly don't know which way is better (chemo first vs surgery first). But, I hated my breasts and wanted them gone.
Cancer sucks - but your daughter is lucky to have such a caring mother to support her!!!
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scared: I think I would be feeling exactly as she is. We were just told they needed it to shrink down and chemo would zap it away. Unfortunately that’s yet to happen. I’ve read now E+, HER2- that are Grade 2 don’t respond as well as others. Great something I wish we’d known up front.
Tomorrow we’re going to the 4 Taxol infusion and I’m asking them to get the referral done ASAP to Vanderbilt
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Hi, Sammi. After my dx, I was referred to see the surgeon. He had one look and one feel of the tumor. Then he said " sometimes we do things differently. I will refer you to an oncologist." Then i had ct and bone scan before my appointment with the oncologist. My oncologist told me that my tumor is locally advanced because a lymph node under my arm was affected. He told me he never expects my type of tumor will disappear completely with chemo. His aim is to gain maximum clear margin for surgery. He examed my tumor after each ac. Each time he said "no significant changes. At least it's not growing." But i could feel the small shrinkage of my tumor. He ordered another ct scan after my 4th taxol, which showed that the tumor was "significantly smaller". He was "brilliantly happy" with the result. I will have my taxol #7(out of 12) tomorrow. I feel that my tumor is significantly flatter, not much changes in size in other dimensions , still firmly attached to the chest wall, still as hard as before, the lymph node still palpable.……I guess I will have a long recovery from the surgery. Best wishes with your second opinion.
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I'm not sure my wife story pertains to your daughter's situation. In regards to chemo, AC was ineffective. Taxol "swiss cheesed" the tumor and PET scan revealed cancer "inactive" or did not glow orange at end of treatments. So surgery then radiation and wife declared NED (no evidence of disease) and/or remission.
I know the above does not entirely answer your question but hopefully helps in regards to tumor shrinkage expectations.
It's all very scary. I had to learn to directly face the fear in order to help my wife. Be aggressive with the doctors. Be that annoying patient/care giver.
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I had a 6 cm tumor plus and also had surgery first, then chemo. Your thoughts for your daughter to go for a second opinion at Vanderbilt would be very wise.
Sending my best wishes.
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Hi all. Thank you for your responses! It’s so crazy how many have had different experiences with similar diagnosis.
We went for her 4th Taxol treatment and the Nurse practitioner said to her it doesn’t feel as hard and may have shrunk a tad. I felt that way too. Yesterday I felt like it has gotten a little smaller and a bit less firm since the treatment Wednesday.
We got the results of the mammogram she had done just before her 3rd Taxol treatment. Her breast tissue is so dense they can’t measure it that way so they just described what is seen. 75% density. I was told before I had breast reduction surgery myself, years back, that my having fiberous breasts ke0t me from sagging and was a good thing. Now I’ve read, your chances of having breast cancer increases. I had a lb removed from each one then. I consider myself lucky that I had some removed, however, would do anything to be going through this instead of my daughter.
We did tell them we wanted to go for a second opinion at Vanderbilt, so they’re going to get this done for us. We’re hoping to hear something from them today.
Thank you all again for responding and sharing your experiences it’s helped me so much
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We’re going to Vanderbilt next Tuesday for the 2nd opinion. Although the Taxol has shrunk Heather’s mass down now significantly and he wants to keep her on it though all 12. That means 7 to go. She’ll finish up just before Christmas and I assume will have her double mastectomy shortly thereafter. I’m just hoping she has time to heal through the holidays.
The breast cancer specialist she’s seeing comes with rave reviews and is a BC survivor herself. I know she’ll help us feel better about everything and may have some useful suggestions for us.
Thanks again for your responses and urging me to get her into another doctor
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hi, Sammi- glad to know Heather's mass is responding to taxol. I am looking forward to hearing about the second opinion. Best wishes for you and Heather.
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Glad to hear that things are progressing for your daughter Sammi. I have just finished radiation. I can tell you mine was also 8cm (largest tumor as I was multi-focal and multi-central) when I started and the large one did not shrink much with 4 ddAC and 12 Taxol, but it did get softer and my affected lymph nodes also softened. My doctor never said mine was inoperable, but did say that they wanted to try to decrease the size before he operated. I had the same problem with extremely dense breast (small D, large C cup), they did an MRI to try to get a better measurement. A second opinion never hurts.
I am starting my inhibitors tomorrow or as soon as the pharmacist as them ready.
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Hi. I had a 12x10x10 cm tumor. It took up over 75% of my breast. They did surgery 1st. The only thing the surgeon said was "if" i do not have enough skin to close, i will have to do skin grafts, which thank goodness he did not. My tumor had grown so large, it broke through my skin. I am not sure why they are telling her she is inoperable? I would get a second opinion. I was scared and told the surgeon i do not want chemo etc, and he said that is up to you, but we are getting this sucker out now!, and he did. Please, get her a second opinion.
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Hello ladies,
Well I definitely want to thank for your input. We did seek a second opinion and went to Vanderbilt. The Taxol apparently has started to soften and actually shrink her mass a bit.
We are going to continue this route. She’s had 6 treatments with 6 to go. She did have to skip a week due to her blood counts being really low so she was given Granix shot last Thursday and Friday to help her WBCs this recover and apparently will have to get them after every treatment from here on out.
The specialist at Vanderbilt was super helpful. She said she’d continue down this path but after the chemo have surgery regardless. She said she definitely not suggest starting a hormone blocker and waiting another 4-6 months to see if it shrinks because that would be risking time for it to spread more. Thank goodness!! She said if we were discouraged by the surgeon or PS or oncologist that we can always come there for the surgery and treatment from there. She gave us some info regarding safe dosage of the steroid. As long as she hadn’t had a reaction to the Taxol it can be lowered to iV 4mg which they were willing were willing to do.
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My tumor was 7.5 cm .They did surgery first and then did my treatments. No issues re: removal . Always be your biggest advocate. Second opinions are always important. I wouldn't be here today if I hadn't done that ! I'm 13 years out Stage 3C 22/22 + nodes
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Texgirl, thanks for coming back and posting. It gives us hope. Xx
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I was inoperable before I did neoadjuvant chemo. I did TAC x 4 followed by a bilateral mastectomy. Then I did TAC x 2 followed by 30 rads and so far I am still taking an AI. Many of my positive nodes had extracapsular extension and were matted together. Before the neoadjuvant chemo the mass in my breast was >8cm. Following the initial TAC x 4, the mass had shrunk to <1cm. Hope this helps.
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I had a 7 cm tumor and I had very small breasts.
I had mastectomy before treatment. The surgeon told me they could not get recommended margins because the tumor was close to chest wall. They also removed 18 nodes in which two were positive with extracapsular extension.
Anyways, after AC + T chemo, radiation, ovary removal and 5 years hormone therapy, I am NED 14 years later.
Good luck to your daughter and I agree that you are a wonderfully supportive mother. She is lucky to have you.
wallan
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G'day, newnorm!
Hi Texgirl, IAmElaine and wallan. Thank you all for bringing me hope!
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Hi beauz, how are you finding Xeloda? I was offered Xeloda, but decided against it in the hope of getting into one of the Palbociclib trials, only to miss out. Xx
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Hi newnorm. My MO wanted me into some trial and then realized that I don't fit in the entry condition of clear margins. Anyway Xeloda is just as good for me. I find X is easier than AC+T. I am doing okay. Are you still considering Xeloda?
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Hi beauz, no I'm not going to do Xeloda. I changed oncologists and the second opinion recommended I go straight to radiation which is what I did. I'm actually feeling pretty good now I've finished my treatment, so I don't really want to take any more drugs. I just want to get some strength back and not have to worry about low WBC and potential infections. I'm glad to hear you're doing ok on it. Xx
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