Poor results after three sessions of chemo - scared

Lily55

alicki do you have any moreinfo on strange link between hysterectomies and breast problems? I am sure this is true for me

alicki

hello,

I remembrer reading some where that ladies having had a hystectomy Were At risk (3 years afterwards?!?) of breast cancer and breast issues. It happened to me but all I got (at least I hope nothing is lurking) is fibrocystic breasts (fatty so not something I had before) and one hell of an IBC scare which all exams (PET, breast reduction material, 4 skin biopsies  3 MRIs, 8 ultrasounds) did not confirm. 

But because the connection is there, I'm getting myself checked (MRI, ultrasound and mammography) once a year. Maybe I'm being over cautious but if I cant prevent BC, the least I can do is try and catch it early and pray I never get it.

Tell me more about your story. I kept ovaries and cervix

Best

Alicki 

MelissaDallas

Alicki, I thought you were trying to stay away from the discussion boards. 

alicki

euh, I'm keeping in touch with Amantha, (fellow European) and what business is it of yours? 

Alicki

bak94

amarantha- I don't have ibc but saw your post. I am so glad you are getting great treatment! I just have to say that here in the US they send you out of the hospital as fast as possible. I stayed overnight, that is it. They sent me home with 4 drains (double mastectomy) and it was a nightmare and painful dealing with them. Your surgeon sounds so caring, too bad that they all are not like that.

Hope you continue to have speeding healing!

amarantha

Alicki, fellow european, I am really glad your pathology report showed no cancer, particularly if they weren't mistaken !  I understand your misgivings.

I was operated at Fief de Grimoire clinique (Poitiers), private clinic. It's small and looks a bit shabby, especially compared to the grandiose hospital, but I appreciated not being the object of a university course demonstration, and being treated by doctors and nurses over the age of 12. :-D

 I'm so happy to have you gals to talk to.  It turned out that by Thursday morning, the bleeding had stopped and all that was leaking out was was lymph drainage, so they took out the drain and sent me home ! So of course I was wondering, this is all fine, I feel fine, no pain, and can move my arm as if nothing happened, digestion is working fine, psychologically I okay no reason to keep me here ... but what about this continuing lymph drainage ? To my surprise, I learned, I will be returning to see the surgeon, or her substitute every four days or so as necessary for "ponctions" == where they will aspirate the lymph (Bye the way, I did some reading and found the normal protocol would have allowed them to keep me between 2 and 7 days. There was no particular financial reason for them to send me home early, the social security would have paid, and they would have profited - the surgeon asked me if I "wanted" to go home. (I was happy to go home, and sleep in a bed that didn't feel like a concrete slab over metal rungs). The surgeon said I will notice the area filling up with fluid and will think I am growing a new breast (it reminds me of a flat tire filling up with air) (I made the surgeon laugh) - so I'll go in every now and then to have the "air" taken out of the "tire".  Now is that weird or not ? I suppose it's weird ! But I like it.  

    At home later that evening, the visiting nurse came and gave me the anti-coagulant shot, and I showed her the scar so she could help me keep track of changes and tell me when to go in for "ponctions'. I told my husband not to look, thinking, it would be horrible for him. But to my surprise, he said no, he wanted to see. So he looked, and was so taken with admiring the admirable scar that he forgot to notice the breast was missing. And then to my amazement, the fact that he saw it and didn't think anything particular about it, was a huge relief to me. I had been feeling sort of - not depressed but ... dysphoric, and then after that, my mood lifted considerably. Just that little thing made a difference.  So here we are, Friday. I'm waiting for the visiting nurse, and yes, the flat tire is filling up with air. I guess I'll be going in Monday for the tire to be "punctured"./

About hysterectomies and breast cancer ... YES I have been thinking about that link. Back when I got the hysterectomy, that was one of my concerns. What is up with that ?? I had my hysterectomy in 2011. 

alicki

Hello,

Great to hear you are doing well and they looked after you properly. How long before you get the path report? 

Next week, will be evaluated for lymphoma again because I have a 33mm lymph node in my left breast + 24mm + 25mm and because they are fatty and even if they are growing, the Swiss radiologists don't give a damn. I phoned the lymphoma specialist who is horrified to learn that I have lost 20 kilos, and extremely tired, persistant migranes and he wants to check my lymph nodes and ME! He has a holistic approach so my hopes are up! Something is wrong, could well be B9, but I want to know what. 

A biopsy of the lymph nodes will give us an idea of what on earth is going on. 

Enough about me. Take care of yourself and let us know how you get on.

Best to you,

Alicki

PS: Your husband rocks!

Kicks

Alicki  - remember well when you had decided that you were IBC and that was the only DX possible according to you.  Also that you were going to say away from the IBC Section after it was proven that you weren't IBC.

You can PM amarantha to keep 'in touch'.

alicki

Good point Kicks, will PM my European friend!

Hope you're fine. 

Take care,

Alicki

amarantha

Three  weeks wait until the pathology report can be completed...

amarantha

Gack. got the pathology report today. Not happy. 4 out of 7 nodes cancerous, and cancer found all throughout the breast ... even after all that chemo and radiation. And even after the PET scan had said there were no more cancerous nodes !  Now the oncologist says we cannot do any more surgery (I thought maybe the surgeon might want to go in and take out more nodes ) cannot do any more chemo, and cannot do anymore radiation. She put me on Tamoxifen of course, but told me at the same time that the cancer was only feebly responsive to estrogen. Here I thought all this time that it was ER+, it is but not very much. I feel doomed. Meanwhile a PET scan will happen in 3 months.

alicki

hello,

I was hoping for better news for you. Would you like to try Curie? I don't know how much French you speak but if you would like and assistance  in the process, I'm happy to help. Just PM me

Best

Alicki 

amarantha

Thanks for the offer alicki, but I'm a french speaker. I don't see what contacting Curie would do, honestly, my doctors were/are already in contact with them, and acted on advice from them. What's done is done.

Akevia

Hey Amarantha how are you?

How did the radiation along with chemo work for you? My tumor has stop responding to chemo so I'm going to start radiation and may do some chemo along with it. My tumor is so large and I'm not sure how much the radiation will shrink it but I'm hoping a lot. I start rads in a week but I wish I was starting on Monday. How will did you handle rads? Was your surgery successful after having rads before hand. I heard surgery can be hard if you have rads before it. Your the only person I know that has done treatment this way and if it worked for you I'm praying it will do the same for me! :-)

Leslie2010

Amarantha, so sorry about the bad news.  But, please don't give up.  There are a lot of different chemo available.  I too didn't have any redness, just a big hard mass (7 cm in a A cup).  Went thru 3x DD AC, the mass didn't soften a bit, pressed my onco for a change of cocktail.  Changed to weekly Carboplatin & Taxol, 6 weeks later, nope, still a hard mass.  Went to see The IBC specialist, Dr. C, he cautioned me more chemo and/or radiation might be needed before surgery, to strive for complete response or close to it.  Understand the medical system is different in France,  please do press on.  Can you change onco and/or seek 2nd opinion?

Reading your posts, reminding me when I was facing the decision of choosing treatment options at the end of 16 weeks of C & T, there was a lady was going thru radiation/chemo combo treatment at the time, she encouraged me, and told me to gain understanding of different treatment options and asked why.  Afterall, it is my body and my life.  Regardless of what the tumor board, my family, and most Internet info suggested that surgery should be next.  I chose radiation and chemo option that the IBC specialist recommended, and that option made the most sense to me at that time.  When I went to radiation onco, he actually forced me to sign a waiver.  Granted that my onco followed my wishes was due to a very reputable specialist was consulted.

To make a long story a little shorter, 5 cm ( surgeon scooped out 2cm for biopsy) mass had only 1mm atypical cell left when the path report came back after MRM.  The radiation onco was the first one to call me, he admitted he learned something new and was so trilled.  My onco declared no more treatment needed, I have gone thru enough.

But, I still requested to have 2nd look of my path report because the last MRI was not clear, sure enough, cancer center found some cancerous cells around the margin.  Asked for recommendation again from Dr. C, 5 more months of chemo was his answer.  Hmmm, after all that, those little suckers were still hanging, I was determined to chase them down.  5 more months of chemo, it was not easy, but doable.

Now, after 2 and half year since my last chemo, dealt with lots of side effects from those treatments, I felt so blessed to be alive and well.  Even if I was not, I knew that I had tried my best to fight it.

Please don't give up!  There are more chemo options.  

Best wishes!

amarantha

Dear Akevia, Dear Leslie, I am very grateful that you have written on my thread, and am very eager to share my notes with you. Akevia, I am very sorry to hear that your tumours have stopped responding to chemo.  I am glad that they are going to try chemo and radiation together, it seems to be the new way of handling things when the chemo does not take.  I did not have a problem with the surgery, the wound has closed and seems to be mostly healed, it was actually a very easy surgery, I did not suffer, I did not need much pain meds, and was out of the hospital and moving my arm pretty normally after two days in the hospital.  Thankfully, the surgeon did avoid cutting under my arm, because the skin still looked pretty bad, (just looked, although it was pretty much healed) - so she had to take the lymph nodes out via the ten inch scar across the breast - I guess by tuneling under somehow.   Now that it has been a couple weeks since the surgery, I am actually having more pain, 24/7 pain, and it probably has to do with "cording" so I will be seeing a physical therapist to help with that. The surgeon felt that this problem was the result of the radiation, but I'm pretty sure the radiation oncologist will say it was the fault of the surgery, hahahah.  

It is very hard to for me to tell how well the treatment of chemo and radiation combined actually worked for me. Every time I saw the radiation oncologist he thought the hard mastitis like area was smaller and softer, and I always thought he was either faking it or a flake, because I could feel no difference.  In any case, I can tell you that the radiation period was pretty okay. It was a rather tough period, because they put me on Cisplatine, once every three weeks (with hospital stay 24hrs), along with Taxol, twice every three weeks - actually a very heavy and chemo regimen, the Cisplatine was just awful (no throwing up, but  nauseated, for a long time, most of all day every day for a week, even longer, and sometimes intense body pains. Meanwhile I had to go every day for radiation. But that was all fine until the very last week. The Cisplatine + Taxol combination is supposed to make you more sensitive to the radiation (and vice versa - the radiation to complement the chemo). But the chemo also made the skin more sensitive -so they only did 25 sessions instead of 30 or so. By the final week I started to have problems, there were cracks that opened up under my arm and along the bra line under the breast. One of them left out a lot of stinky pus, they had me put Eosine on it to keep it dry -- twice a day. The the end of the radiation I was quite a mess -Eosine all over, and the skin very dark, and lots of places wanting to crack open. But none of that was of any real concern to them, and it healed.  I was just concerned that the tumour did not seem to have diminished at all. The radiation oncologist was persuaded it was much better, but even so he had me take a blood test for CA-15 markers, and of course we did an end-of-treatment TEP scan. 

The blood test showed no cancer markers, and the oncologists were very happy with the results of the TEP scan after my final treatment, it showed that the cancer was reduced to almost nothing in the breast, and it no longer showed three cancerous lymph nodes lighting up as it had done the first time, but only showed one tiny spot, that they considered not clinically important. HOWEVER none of that was true ! Or else it was true at the time of the scan, but was no longer true three weeks later when the surgery was done, because I just got the pathology report (Friday) (I wrote about it above) and unfortunately -- there were FOUR cancerous lymph nodes out of seven taken out, and cancer still anarchically in the breast, although, thankfully, mostly towards the middle, and the skin was fine, so the surgeon felt that the margins were safe. 

So I am not sure that the extra chemo and radiation had any real effect on the tumours. It is now impossible to tell. I can say that the report classed my cancer as "stage 2" - I guess because there were very few cancerous cells found in mitosis  - I am not a doctor and am in no way competent to read this report, however I am pretty sure that is the result of the chemo and the radiation because it don't think it would have been "stage 2" earlier. 

Leslie, I very much appreciate your input - at the time I wrote the opening post - I was ready to fight for more chemo, and as you may have gathered by reading this post, I actually won that fight, and did get more chemo. First Taxotere, which also had no effect, and then of course - the regimen of chemo and radiation as I just described. In France -- it is difficult to get an actual "second opinion" because actually - you don't have just one oncologist or one doctor, but a whole team of doctors working together hashing things out and consulting other doctors. It is much more of a team work and scientific consensus system, such that the final decision to give me chemo and radiation together was made by all the oncologists at the regional hospital together in consultation with the doctors in the famous clinic in Paris, hence dozens of opinions.

Even though we all would have liked the hard mastitis type lump which took up the better part of three quarters of the breast - to diminish more before surgery, after the chemo-radiation period was finished, it was considered that surgery could no longer wait.  So anyhow, the breast is off of me, the bad lymph nodes are out of me and now it's Tamoxifen time  ... now we just have to close our hands together and pray like hell that it doesn't come back, or that it doesn't come back to soon.

Back to Akevia -- Anyhow the main point of this is to say that the surgery went fine, the radiation was mostly no problem and despite the difficulties it is definitely liveable, and worth trying, so I think it would be good to try it for it, and I wish you all the best. I am with you, I will be thinking of you, I hope you keep me posted, we are sisters in this !!

Akevia

Amarantha thanks for the detailed response, I start rads on the 16th and I'm on weekly navelbine chemo but that might change. I will keep you posted I'm just ready for it to be over with. Radiation sounds a bit scary but we will see!  Thanks again :-)

amarantha

Akevia, I SO understand what you mean when you say "ready for it to be over with" yessiree ! Radiation will be a walk in the park after chemo. Nothing to worry about ! Hugs.

Akevia

Thanks Amarantha I'm ready!!!!! :-)

Leslie2010

Dear Amarantha, love your spunk and sense of humor!  You did fight your way to get more treatments!  I felt compelled to share my long treatment journey, because if you believed it was IBC, the fight might not be over yet, even though my onco thought it was due to the great path report, the IBC specialist cautioned me it was not over, thus 5 more months of chemo.  

Will pray that  tamoxifen does the trick for you and you will enjoy NED for a long time;-)

(hugs). Good for stretching out cording....

Leslie

Kicks

amarantha - My TX plan was quite differenr than your (and almost everyone I see post).    19 of the 19 nodes removed were positive.  The area had formed a 'lump' with good margins but still quite large (don't remember the size).  That was over 4 yrs ago amd I'm still NED so it's not all 'gloom n doom'.

However, as I said my TX plan was quite different.  I did 4 DD A/C neoadjuvant to get the IBC to shrink and form into a 'lump' with margins so Surgeon could have a hope/chance of removing it.  2 weeks after last A/C, I had surgery and yes 'it' was there but had formed a lump with good margins and still in all the removed nodes and surgeon felt sure he had been able to 'get it all'.  3 weeks after surgery I started 12 weekly Taxol adjuvant, followed a week after last one with 25 rads.  I asked Dr T. why I had done chemo, surgery, chemo, rads instead of what all/almost all others were saying they were doing/had done chemo, chemo, surgery, rads.  He told me that there are different 'schools of thought' (of course there are) and his idea was that the best plan in most cases was to use neoadjuvant chemo to get 'it' to where surgery had a good chance of getting it out then go back with a different chemo and rads to attack any cells that might have somehow been 'hiding' somewhere rather than trying to get it all gone with chemo before surgery and none after.  That's always made a lot of sense to me - neoadjuvant chemo to get it where it's operable (though still there) and get it gone/out (surgery) and then the adjuvant chemo would only have very little (if any) to kill.  Then rads as a backup.  Made sense to me.

We are each so unique so what 'works' for one may not for another.  For me, my TX plan, though diferent than most have, worked as it should have.

Akevia - for me rads were easy during them.  Taxol had been real nasty to me (complete and utter EXHAUSTION), but I felt better everyday as I went through rads which started a week after last Taxol.  I am one, of the unlucky few, who burned very bad AFTER rads but had no skin issues at all during them.  VERY few burn as bad as I did so it's not to be expected but is a distant possibilty.

Akevia

Thanks Kicks for the info!!! :-)

amarantha

Dear Kicks and Leslie, I do agree that the fight is not over yet, and would feel more reassured if they were to continue chemo - despite the reduced life quality. I thought they would want to do chemo to mop up whatever else might be lurking but not showing up on the PET scan ... however the fact that the pre-adjuvant chemo had little effect if any may be what is stopping them. I am particularly nervous about leaving it at this in that there were vascular embolisms that showed up in the breast .... etc. The oncologist told me since there was no traceable cancer left to target, it made no sense to do chemo - how would they know if it were working ?  To which I'm wish I'd answered that for people who get chemo AFTER surgery, it is the same issue !  We seem to go around and around with this reasoning. Meanwhile, I am very glad to hear that there are long term survivors of IBC ! 

They did find it reassuring however that the traces of cancer found in the cut-off breast were in the center, and the skin was good. 

My cancer was clearly IBC, while the surgeon does not hesitate to speak of it this way, the hospital still seems reluctant to use the term. All of the various reports - IRM's, PET scans, biological reports - describe IBC the way an scientific ant might describe a house without naming it : "...it has a condensation of angular masses forming rectangular conglomerations that meet at right angles. Attached to these four rectangular conglomerations (walls) is an profusion of imbricated curved structures showing signs of being heated, overlying tubular planks, in an inverted V (roof). The walls are perforated by several wide lesions, including one nearly 2m high, sealed with a thick membrane in which a very dense spherical protrusion may be observed."  (It's a house dammit, it's house !) -- so reads the pathological report. (It's IBC dammit !)

p. s. Leslie, it's great that you were able to see an IBC specialist. Perhaps I ought to inquire if such a thing exists here.