No response to chemo

Sillsy

hi, I have had 6 cycles of Fec-t chemo and then a double mastectomy, path results show no response to chemo. I'm waiting for meeting with oncologist to discuss what's next.

Anyone have similar issues?

mye

Hi, I am having an MRI done next week, which will be midway through my TCHP chemo treatment. Did they do any scans midway to check progress? I remember in the beginning they told me if the cancer was not shrinking they would stop treatment and go straight to surgery. I am so sorry you are going through this. And sorry I am not more helpful. This place a great resource though. I hope you will have more answers soon. Take care.

Sillsy

no they didn't do any scans, my oncologist said he could feel my tumour and lymph nodes shrinking and was happy with the clinical response, but after surgery path report says no response. Now I have the added worry of having another full body ct to check if the cancer has spread.

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mye

Sillsy, that is so mindbogling that the mass was no longer palpable yet there was no response to the chemo as per the path report. Very disappointing. :-( May I ask how big the tumor was before surgery and did it stay the same size? My breast surgeon also said I don't really need the interim scan, it is the onc that does it as standard routine.

Sillsy

mri stated a 3.2cm IDC tumour and a 0.9mm IDC tumour before chemo, after surgery 0.9mm IDC tumour had stayed the same but the 3.2cm was 5cm but with small scattered IDC and majority was DCIS. I don't understand it, In my opinion it has grown but my surgeon said no because DCIS doesn't show up on mri if it's not calcified and because the solid 0.9mm tumour hadn't grown. So I'm very confused to say the least and no-one can give me any straight forward answers.

new_direction

Sillsy do you know the ki-67? Maybe the cells are slow dividing?

do you know the ER+ percentage? many women respond very well to antihormonals. Do you know which one you will be getting?
there are better results for younger women with ovarian supp + aromatase inhibitors than tamoxifen.

I wish you good luck and have my fingers crossed for a clear CT.

http://www.ascopost.com/ViewNews.aspx?nid=20664

Sillsy

no I don't have any off that info, I'm in the uk and we don't get the reports it's only discussed with you and even then you are only told the basics.

I spoke to my oncol before surgery about hormones and he said it's up to me which one I want, I'm also brca 1 so I'm getting a hysterectomy soon so I might suggest ovarian supp + aromatise. The only downside is that they are only approved for 5 years but do work better.

Ive got upto a 3 week wait for my ct scan and that's urgent. So it's gonna be a long time worrying.

cbd

Hi Sillsy

Sorry to hear of your diagnosis and lack of response to treatment. I am also in the Uk and have asked my onc for all my reports and results which i have received to date. Many of the tests available in the USA are not done in the Uk as standard not under the NHS or private and the standard of care here is according to the last known best of the trials. In the USA they tend to be more aggressive with treatments.

You are entitled to second opinion under the NHS so if your onc can recommend another onc in another trust not too far from you it might be worth seeinfg someone else for an opinion especially if your onc has left the decision of hormones up to you. If you do have some sort of cash back plan or the like you can normally get consultancy fees 75% paid back so it might be worth if you can afford it to see the second opinion privately as under NHS you can wait several weeks and privately you can normally get an appt within the week or so.

Good luck

CBD

mye

Sillsy, I'm so sorry you have to wait that long. It is the worst and hardest thing to not know and have to wait. In reading your post above I'm thinking maybe part of the confusion is the DCIS progression. The chemo as I understand is given to kill the invasive cancer cells and not meant to get rid of the cancer cells in situ. I believe the chemo can't really get to it. Also the DCIS may even be a different type (in terms of ER, PR, HER).

Wishing you a peaceful mind and clear ct.

Sillsy

I will see my oncol on Tuesday to find out the next plan and I will also discuss my options about a second opinion. I got a second opinion and moved breast surgeons as I wanted a better outcome than what was offered.

I rang the ct department and they said there is a back log blah blah blah, so I'm gonna ring again tomorrow and push them to hurry it up.

I was told by my breast care nurse that DCIS continues to grow on chemo, but the core biopsy in the beginning showed IDC, wouldn't it have also shown DCIS as well? She said the tumour could of broke down which is why I now have scattered IDC, but there is no proof of this. Also no-one knows where the DCIS has come from as it wasn't seen on mri at the beginning. I have more questions but they can't give me answers only opinions as there is no proof.

Boo123

Silly, I am in the UK too - what CBD says is correct 0 you should be given copies of all of your reports if you ask for them. Interpreting them is another issue entirely as they can be complex.

I am worried about you. I hope that you have family and / or good friends to confide in and share your anxiety with at this difficult time for you. Try to remember that whatever was found after surgery, IT IS OUT - it is GONE from your body. Sounds like there is a plan for further surgery to help reduce your risk. And probably further chemo can be made available to further reduce recurrence risk if you press for it, given your position following first round of chemo. There are lots of medications out there - a plan will be made for you, and you will feel better once it is in place. Also ask your Dr for a mild diazepam or similar to help you out in the short term.

Wishing you peace of mind. Boo

cbd

I was originally diagnosed with a 3.2cm tumor and had a complete response to chemo before surgery, however the path report after surgery - lumpectomy showed DCIS at 3 margins but no sign of IDC i had further surgery and still DCIS so I was advised either to have a mastectomy or radiation and tamoxifen for 5 years. I took a second opinion and was told the second option was viable so i went for that. 6 months after finishing herceptin whilst on tamoxifen I went for my first yearly check up and they saw something on the mammogram which turned out to be calcifications of IDC and DCIS. I was told i would need a mastectomy but a staging ct revealed spread to mediastinal nodes. So i went back on chemo.

When i discussed it with my doctors if it was a recurrance or was there before and had not been picked up due to size on the many MRI'd i had had, he said they have no answers because one can never know. So I am looking forward and trying to get the best treatment i can.

I hope you have a good oncologist because in the NHS area plays a big part where good doctors are. In the hospital i am being treated there are patients who come from several areas of England some travel up to 2 hours to get there.

Sillsy

thank you everyone for all your help and advice.

I agree boo123 It's out and gone and at that's the main thing. Just need another plan now.

cbd- I read some research recently stating that it is really common to find DCIS after IDC within a tumour after chemo even tho biopsy states IDC only, I asked my breast care nurse about IDC turning into DCIS from chemo and she couldn't answer me but there is significant research, all these scans are not very accurate at all they can't tell you how many nodes are involved or how big your tumour is, I was staged a 2b before surgery from scans and then a 3c after path report, it's a joke in the nhs really unless you know what to say they will walk all over you.

I hope everything is going well for you now cbd?

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debiann

Its also hard to know the exact size of  tumor from a scan. On mammo my tumor measured 1.3. On ultra sound it was 1.5. After incision it was 1.9 with both IDC and DCIS. All of this happened pretty quickly (I had lx before chemo). My breast surgeon said the tumor didn't grow, the scans just didn't give the precise size. Its possible your .9 was actually larger to start and it seems like your other tumor broke up some so there was probably some response to chemo.

Sillsy

my breast surgeon said it was difficult to get a true size from a scan, I'm going with the majority of opinion so far which is- my 3.2cm IDC tumour broke down and scattered into the DCIS which wasn't picked up on scans or core biopsy as this is the only understandable explanation.

I was told that if you have both IDC and DCIS in one tumour they measure all the IDC and add it together, has to be above .5mm to measure so if there was 4 small areas of IDC at .5mm each you'll have a IDC tumour of 2cm then they measure the DCIS the same way.

Considering my tumour measured 3ish cm of IDC as from core biopsy, but now 5cm tumour of small scattered IDC which is less than .5mm so it can't measured in DCIS it must have broken down and the DCiS continued to grow through chemo as chemo doesn't touch DCIS so why does the path say no response?

Is it because there is no proof? Or because I'm completely wrong and in fact my tumour grew and I'm in denial?

Stephmoen

this is the hard part with neoadjuvant chemo I was diagnosed IDC and DCIS ultrasound 1.5cm mammo showed same that day had mri week later was 2.2cm dr blamed partly on swelling I had a pet scan the suv in my breast was 1.9 they don't consider anything under 3 cancer..my dr thinks my tumor is smaller and it's mostly dcis which I would still have after chemo I finished 5 of 6 tchp my tumor is MUCH smaller but I still feel something hoping its dcis but they say you can't "palpate" dcis so who knows cancer is very frustratin

Sillsy

Tell me about it, I'm so confused and I don't want to ask my dr about trying to explain any more to me as it will just confuse me more.

DCIS was not even mentioned to me at the beginning and yet it's there, somehow it's there, the scans don't show everything so we have found out.

I just want my plan of action and my ct so I can get on with it.

Feeling very confused and fed up of trying to understanding and second guess what the Drs are saying because I get the impression they don't even understand it very well.

april485

DCIS is often found with IDC. They are not treating your DCIS, just your IDC. It cannot respond to systemic treatments such as chemo so the size of your DCIS would not change from having chemo. I am confused by your post. Did they say that the IDC got larger or did not shrink from the neo-adjuvant chemo you had? It sounds to me like it got smaller by your post but more widespread? Sometimes after a biopsy or lumpectomy/mastectomy, they find more (or less) than they originally thought was there initially. I think a second opinion is a good idea in either case.

Wishing you the best whatever happens!

cbd

The way my surgeon explained it to me when my margins came back not clean was that dcis is changes to the cells in the ducts and it can travel through the ducts so you might have one area that has dcis a clear space and then another area with dcis, the problem with dcis is they do not know at which point it becomes invasive if at all so today they recommend mastectomy for widespread dcis. Chemo does nothing for dcis, which will not show up on any imaging unless it is larger that .3mm or so. thats why maybe it didnt show on your imaging and neither on mine.

Sillsy unless you have anything come up on your ct scan i can't believe they would offer you further chemo, but they probably would put you on some anti er medication and if you are unsure of your doctor's approach go for a second opinion or even 3 opinions as long as you have 2 the same opinions to go by.

try not to worry about what was and ask your doctor as many questions as you need to feel confident in his abilities to treat you. If you have a good oncologist and feel confident with him you can also ask to see him at each appointment so you can discuss your treatment with the same person each time.

Sillsy

I know it's confusing me, I feel like I'm going round in circles.

Before chemo IDC 3.2cm ( from mri and core biopsy ) after 6 cycles of Fec-t pathology results say lymphovascular invasion 5cm with small scattered IDC foci ( no response to chemo ) I didn't understand what this meant I assumed my tumour had grown but my surgeon said 'no the 5cm is DCIS dormant cancer cells with small scattered IDC foci ( small dots ) but he still said no response to chemo, I just don't get it.

Sillsy

thanks cbd, I don't think they will give me more chemo either, I'm thinking extensive radiation and anti-hormones, I read some research that aromatase inhibitor and stopping your ovaries works better in younger women than tamoxifen, I'm on the waiting list for a hysterectomy anyway.

I see my dr tomorrow as they have had a mdt meeting today and decided what there plan of care is. If I don't agree I will get a second opinion, one thing for sure I want the anti-hormones tomorrow.

Sillsy

I'm still so confused how everything is different if chemo didn't work... My head is spinning.

Thanks for the explanation kayb.

Sillsy

well I spoke to my dr today and my tumour size is 0.9mm IDC with 12/17 nodes positive, 5cm area was breast tissue that had some vascular changes with a couple of pin prick spots of IDC which could not be measured as so small. The change in size of 5cm area from mri is because when sliced in pathology it generally is bigger as it's vascular breast tissue which would swell at surgery.

Chemo had stopped tumour growth but not shrank it, therefore unlikely to spread.

Plan- Radiation to chest wall and clavicle as high number of positive nodes, anti-hormone medication. Started on tamoxifen as I requested and wait untill after hysterectomy in a couple of months to go on inhibitors.

lintrollerderby

Sillsy wrote: I spoke to my oncol before surgery about hormones and he said it's up to me which one I want, I'm also brca 1 so I'm getting a hysterectomy soon so I might suggest ovarian supp + aromatise. The only downside is that they are only approved for 5 years but do work better.

Sillsy, since you state that you have a BRCA1 mutation, please know that changes things for you. For those without a BRCA1 mutation, ovarian suppression can help to reduce the chances of breast cancer recurrence or spread. HOWEVER, those of us with BRCA1 mutations are at significant risk for ovarian cancer, so removal of the ovaries and fallopian tubes is STRONGLY recommended. Just shutting them down is not enough--that's an approach for a woman at high risk for recurrence who does NOT have such increased risks for ovarian cancer.

Also, what are your percentages of ER+? What you stated about your physician leaving hormone medication up to you makes me wonder what the percentages are. Since you're PR- and HER2- as well as BRCA1+, I would not be surprised in the least if your ER+ was low. The overwhelming majority of breast cancers that develop in BRCA1+ women are Triple Negative--over 75% are, in fact.

You should also know that it is not uncommon for BRCA1+ women to respond differently to chemotherapy. Research shows that the role of BRCA malfunction on the repair of double-stranded DNA breaks means that sometimes when other chemos do not work for us, the platinum-based chemos are a better option as well as the addition of a PARP-Inhibitor. I realize you are likely done with chemo, but my point is that simply having this BRCA1 mutation makes you different than most other breast cancer patients and you need an MO who understands the significance of it. We are a small group with special needs within the breast cancer community.

Best of luck.

Sillsy

I'm booked for a full hysterectomy but I'm on a waiting list, typical NHS. I thought the ovarian suppression and inhibitors would be better than taking tamoxifen untill then, but they have started me on tamoxifen now untill the surgery anyway.

My path results didn't state the er+ in % only er+++, so I assume that means high amounts, my oncologist said I was rare being er+ and brca1, my auntie is brca1 and tnc but 15 years clear.

At the beginning of this rubbish year I asked my oncologist about targeted therapy at the brca1 gene as I was told by my genetics dr that it responds well, but my oncologist said that we are unable to target brca1 therefore I was given generic chemo. I should of researched the brca1 response to chemo and would have been able to discuss different options with my oncologist, I have just read some info on the parp-inhibitor and I had never heard of it before, I will have to do some research on this at it sounds quite promising although they have said no more chemo.

Thank-you for the information I think I forgot about being brca1 and just looked at chemo and targeted therapy for er+

new_direction

Without a doubt I would have chosen a lower stage if I could but rationally I like the idea about staging not being very important.

Rather have a large tumor burden which is sensitive to therapy. Being hormone positive you still have lots of hope of finding a succesful treatment.

Plus I think you are right about the "no response" not being true - you had no progression on the treatment, so it seems it kept everything in check.

Good luck.

GraceB1

My pathology report also said no response but when I questioned my MO about this he said he knew I had response because he could feel it. The no response comment is common because the pathologist doesn't have the pre-chemo information. All they know is that there is still some cancer there - not that it has shrunk or debulked. It's an incomplete response. Mine flattened like a pancake but was still 5 cm.

agness

I had an MRI after Neoadjuvant treatment and my BC showed signs during chemo of responding.

Were you offered no scans along the way to check to see how your cancer was responding?

If you didn't have a complete response was there discussion yet of a different round of chemo for you?

Since there was cancer remaining, have they preserved the tumor tissue samples? You might want to get genetic testing done of the tumor to figure out what mutations make it different. Better to pay for this now then wait and see is my feeling. Ask your oncology team to arrange for tissue sampling and get your pricing.

Have you seen a doctor who practices integrated oncology such as a naturopathic oncologist? They might be able to help you understand what is going on in your body better. My chemo tests were awesome but the nutritional labs ordered by my NO showed severe nutritional imbalance of magnesium, copper, zinc, ferritin, and Vit D. Learn more about your body and the environment in which this cancer mutated and grew.