neoadjuvant results

Walden1

I’m just finishing neoadjuvant chemo. I’ve have one tumor that shrank a lot and one that seems slightly smaller. My oncologist says sometimes the cancer cells die but the tumor size doesn’t change much. I’m Er positive so a lot of shrinkage not expected. Has anyone experienced this after getting their pathology report back? Hoping to hear some good news stories as I finish my last two chemo treatments

Legomaster225

Walden, my surgical pathology showed a 3.5x3.5 “tumor bed” but “scant viable cancer cells scattered in a 2mm area,certainly less than 5%”. I could feel the tumor getting softer and slightly smaller maybe but the pathology reports were very good.

Walden1

That is fantastic! I am so happy for you! Hope your doing well with th hormone therapy. We’re you highly ER positive

Walden1

Did you have any strange feelings in your breast? I get pain at the tumor site and in the upper part of breast. Also a sense of fullness, like when you get your period. Hard to describe but onco is not concerned. Did you have that feeling of pain & etc? Wee you strongly ER positive

Walden1

One more question for you. Did you have imaging along the way? Mine is just looked at in the docs office. No U/s no MR

Legomaster225

I felt heaviness all along, no pain , but my breasts were always lumpy, bumpy with many cysts. Always achy mid cycle and just before my period. My large tumor was 23%ER. Grade 2 My second (which was a surprise at surgical pathology ) was 100% ER. The surprise tumor did not show up on mammo, ultrasound or 2 MRI’s so I’m not sure how big it was to start with. It was Grade 1. That was very weird.

I did have a mammo, ultrasound and an MRI’s both before and after chemo.

I pray you get good results too!!

Walden1

Thanks again. Did the doctors have any explanation as to why it didn’t show ? Is MRI not very good at picking up grade 1? This is one of my concerns because I have dense breasts and mammogram doesn’t show much of anything ( not even the two 2 cm tumors I could feel. ) only US and MRI showed that

Walden1

Hi,

Thanks for your reply. How did your incision react to radiation ? I’m guessing the incision is still healing somewhat when radiation starts.

Egads007

My lumpectomy path report showed necrosis (die cancer, die!) all around the tumour. It shrunk during chemo but visibly grew back to almost the same size during the month wait for surgery. I was thankful that it’s borders showed that the chemo worked. Mine was 15% ER+, originally diagnosed as triple neg from the original biopsy. 5 weeks of rads after

Walden1

Egads,

Congrats on a great result! I’ve noticed a lot of people have had lumpectomy of 4cm tumors. My surgeon says I will be too deformed for lumpectomy, although my total area is only slightly larger around 5cm (two tumors side by side) and my breasts are DD. Perhaps it is my 3 o’clock position that is the trouble. Anyway, i guess my question is how your surgeon achieved a lumpectomy for your case

Egads007

Hi Walden, my lump was located at 12 o’clock high up on the breast, and originally was seen as almost 7 cm (yeah Mount Everest). It got VERY obvious very quickly. Turned out that it was surrounded by 4 benign cysts (I referred to the lump being placed on 4 Firestone tires....too bad it didn’t drive away!) Before chemo shrinkage my BS said it was 6 cm, but considering where it was located a lumpectomy would be fine. It’s left a slash like scar from the lump location across towards my armpit. The end result is a little deep but since it’s in an area of natural sagging it’s not too bad. My MO also said that the location made it possible and I was lucky that it was where it was (lucky?? Relative I guesslol)

Walden1

egads07,

Thanks! It is strange to say lucky, but it’s all relative. As long as I’m healthy I will be thankful for the mastectomy, but it sure would be nice not to. Looks like you just passed your five year anniversary! Congrats! What a milestone! Did you ever notice pain, or odd feelings in your breast? I have some now but my doctor is not concerned

AliceKo

Yes, it is possible for tumor cells to die and it still appears on your MRI. My surgery pathology was completely clear of cancer after treatment, but MRI showed I had massive tumors 8cm. Hope your MRI showing false positives. The pathology results is what you are looking for. Some hospitals can do a repeat biopsy on the tumor after the chemo.

Egads007

Walden, not so fast....5 years on August 23rd, I told my family I expect a party....and a bunch of expensive gifts lol!

My lump didn’t hurt until a week before surgery, and I’m not sure if it was an imagined aching or if it was hitting nerves...it was pretty big, so it would make sense. To this day I get the odd pain in the scar area. Especially after the gym when I do a weight increase with the weights...push ups can get it going too. I’m also still very cyst-y, they can ache after a mammogram for days. I think after going through all that we do that we are so very aware of our breasts, so much so that something we may have not paid attention to before sends up a red flag in our head.

Big congrats on almost making it thru the chemo!!!!....quite the accomplishment. Hope you’re proud of the strength you’ve shown the world. Every treatment pins a badge of bravery on us. For myself I like to take something away from the crummy things life throws at us. Cancer, from diagnosis thru treatment, has made me feel I can take on the world! Hope you get that feeling too....it’s kinda awesome!

Walden1

Sorry about that, guess I read the date wrong-I’m blaming chemo brain! Hope you have a big celebration on the real day!

As for feeling strong, it really depends on the day. Prior to diagnosis I thought I was a pretty tough cookie, but I rely a lot on family to get me through the bad days. Then I have a week of good days where I almost get my full strength back emotionally and physically, then repeat. I like what you said about a badge of honour. Each chemo treatment takes a grapest deal of bravery!

I also have lots of cysts in my breasts and they are very dense. Curious what screening was recommended for you after treatment. My breast density means that mammograms are so hard to read, they can’t see 2cm tumors despite already knowing where they are because they are palpable. U/S is better and MRI better still.

Walden1

AliceKo,

Thanks for this. Did you ever have pains or odd feeling in your breast

Egads007

Hi again Walden, no prob on the date lol just teasing ya! As for screening after treatment: MRI first, clear which shocked the heck out of me as it was done only 3 months after rads. After that I was physically examined every 6 months for 2 years, with mammogram yearly, ultrasound when needed. Pretty basic. Besides screening I see my NP and MO yearly.

As for strength, it’s still early days for you. Your ups and downs mirror mine at the time. I spoke to a therapist that was sent into the chemo labs at the half way point. She was a survivor and said that it takes about 2 years on average to come to terms with what’s happened to you. For me, she was right. around the two year point I was able to start ‘rebuilding’ my mind, body and soul. I still long for the old carefree me at times, but take comfort in the strong person I’ve become, and my ability to know what’s really worth getting upset about into greater perspective (most of the time lol!) i hate the term ‘my journey’, but at the end of the day, it really is. Take your time with recovery, just roll with it at your own pace.

Walden1

Hi again! I received my pathology report today, and I am very confused. When I was with the surgeon hesaid great news no cancer in the lymph nodes! That's a big deal, you should celebrate! The rest of the report he didn't discuss. When I got home I read that I had moderate residual disease characterized by foci of IDC in patchy distribution (RCB 2). Most of the residual cancer is DCIS, but about 4 mm of IDC. Since my surgeon didn't review this in detail with me I'm totally confused as to weather this is good news for prognosis. My surgeon is very patient, but I'm surprised he didn't review the findings in more detail.

My question is, who on the medical team should review the report in detail with me? Is it the oncologist? Do I need to request it is taken to a conference or “the tumor board"? In the Canadian health system Can I request a meeting with the doctor who wrote the pathology report. Did you have a nurse navigator who guided you through all this to put the pieces together? I feel like each doctor is addressing their specialty but how each specialty impacts decisions or options for the total treatment plan is not being presented to me. Who should be providing that kind of guidance?

I'm concerned the report is saying that the chemo did some good, but not a lot. Did I go through neoadjuvant chemo for little actual benefit? Maybe chemo wasn't necessary? Do I need more chemo because the result was moderate All these fears running threw my head!

stephilosphy00

I only had one tumor, it shrunk from about 2.5cm to 1.8cm at surgery after ACT neoadjucant chemo. My tumor was almost 100% er and pr positive with a low ki67.

Walden1

Thanks for your reply Steph Was xeloda suggested because of the positive node?

stephilosphy00

Yes! Because I didn't have complete response, I was suggested to take Xeloda for 6-8 rounds for prevention. I chose to stop after finishing 6 rounds because both my onc and me think hormonal treatment should be my big gun.

FarAwayToo

Hi Walden, I had similar questions about who should be reviewing the results with me. My surgeon did a good job, but I still went through it with my oncologist. I also did neoadjuvant chemo, and had good results, but not a complete response. My tumor was highly ER/PR+: about 80-85% on biopsy and 95%+ in the residual cells. I was node negative also, and yes, it is a huge!

Does your pathology report states residual cancer cellularity (it should be stated in percentage)? If you go to MD Anderson RCB calculator http://www3.mdanderson.org/app/medcalc/index.cfm?p... you will see that this is the main factor that drives the result for the RCB class (yours is stated as 2).

I'm not sure how this would work with you being in Canada, but I requested a second opinion on my pathology just for my peace of mind from here: http://breastconsults.com/about-us/. This is basically a "one woman" shop, and the pathologist is very knowledgeable. She will also discuss results in detail with you over the phone. They were not covered by my insurance but I gladly paid $135 out of pocket. Second opinion had only one disagreement with the original pathology and that had to do with the size of the residual cancer, although she told me the difference was negligible.

From what I'm reading, adjuvant chemo is not very common after neoadjuvant treatment for ER+. Most doctors agree that anti-hormonals are our best defense. Not sure how high RCB should be for them to consider adjuvant Xeloda, although I'm in a FB group with 2 ER+ ladies who got Xeloda after having no response to neoadjuvant chemo. With good response and negative nodes I would doubt Xeloda would be a treatment of choice, although I'm not an oncologist, of course.

Walden1

farawaytoo,

Thanks this is great information! As to residual cells it is confusing because it says residual IDC of 5% for 1 tumor and 15% for the other, in a patchy distribution, but also says DCIS is present for both and doesn't give a percentage for that. Was your report the same in the way the percentage was communicated? Initially I thought 5% and 15% were good numbers, but RCB 2 is concerning

Walden1

Hi farawaytoo,

Did your second opinion review samples and redo testing or just review reports?

Carri

FarAwayToo

Walden, I didn't have any DCIS, so no percentages for that. I had one nvasive tumor and percent cellularity was reported (all invasive). But I see that in order to calculate RCB index you need percentage of in situ disease. Mine was 0, so it was easy. You may try to give your pathology department a call and try to speak to the pathologist who was reviewing your slides. Does your report state RCB index along with RCB class? (Index would be expressed as a decimal number, like 2.075 or something like that).

One thing I know that should be encouraging for you is that is GOOD to discover DCIS on pathology, it means that your tumor wasn't as aggressive. Alas, mine was, I had a very high Ki 67 on biopsy - 40%. My onc thinks that's the reason chemo worked really well for me even though my ER+ percentage is also high.

Second opinion pathology gets the slides (your hospital needs to send them to her) and reviews them. She doesn't prepare the slides, but she is looking at those that were prepared at your original path lab. She then produced her own report, which, to be honest, I found a bit minimalistic compared to an extensive one my original pathologist did. However, she told me she agreed with everything original pathologist wrote, except the size of residual focus of cancer. I also asked her lots of questions where I didn't quite understand what original report was saying.

moth

walden - pretty sure you should be seeing your oncologist next to discuss what they recommend as further treatment. Once the thing is out, the surgeon is finished. All they'd be involved in is decisions to re-excise depending on margins etc.

Walden1

Thanks again FarAwayToo. My report does not show RCB index, only RCB class. It also only commented on the tumor size by longest dimension, so it's hard to know if it shrank in any direction.

Did your report say anything about the remaining IDC being alive or dead, or anything else about its activity? I know some people who were told the remaining cancer was so damaged they couldn't tell if it was alive or dead. I will see my onco next week so I hope she can tell me more although she generally doesn't go into detail. I did call the pathologist but he said I need to ask the onco what the implications are of the findings. All he knows is the chemo had an effect, but not what it means. I think I’ll phone him back because he must be able to say something more about weather the cancer cells are showing damage or death from chemo.

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FarAwayToo

Walden1, nothing on my report in terms of "viability" of the cancer cells that were left. I was told by the second opinion pathologist that she didn't see any dividing cell. I don't know if they can even see "dead" cells" vs "live cells".

Does your report state the size of tumor bed? They should be able to see how big the tumor was originally, and the dead cells (fibrosis) form the tumor bed, as far as I understand.

However, I agree with Moth - talk to your oncologist about this. The only important question is "what is next". Are you going straight to antihormonals, do you need radiation or will they recommend something else.

Whatever it is, keep in mind, that neoadjuvant chemo is still not very widespread in BC treatment, and doctors often don't know what they should do depending on their patient's response to chemo. It's been pretty well established that in triple negative not achieving a pCR puts a patient at higher risk of recurrence, but in ER+ BC the correlation is not as strong. Majority of stage 2 ER+ patients get surgery first, so nobody even knows what kind of chemo response that would've had.

Walden1

Moth and Farawaytoo- thanks for your advice. I saw the radiologist today and she said radiation would be recommended because of my age, and remaining cancer.. However she also said I’m in a grey area, so some people might refuse it. I’m not low risk or high risk. II had a mastectomy without recon, no nodes, no lymphovascular invasion, so I’m pretty surprised. They are suggesting whole breast radiation with nodes too. Although I have the option to refuse the nodes and just do whole breast. Guess I’d rather over treat than under treat but pretty concerned about side effects and another month of horrible treatment

FarAwayToo

Walden, I was told going into neoadj that if my nodes will be clean after surgery I won't need radiation. I'm young too - 40 at DX and 41 now. I double checked with the radiation oncologist and she said "you don't need radiation". Surprised they are offering it to you.

I'm of the same mindset as you - rather overtreat, however, to be honest, I was relieved when I got that resounding "no" from the RO. My MO also looked at me like "wha?" when I asked her about radiation.

Did you have any clinically suspicious nodes at DX?

Walden1

Farawaytoo- I had no nodes at diagnosis and no nodes after chemo as well. Apart from being young my onco said she would recommend radiation because I had two tumors both with residual IDC. In fact she said if you only had 1 two centimeter tumor I wouldn't suggest it. So sounds like my doctors would have given you the same recommendation as yours di. Apparently size puts me in a grey area so I could have a 3-5% risk reduction