I’m back

@sallylovestosing Im
so sorry your are going through this too. I hope your biopsy results show that they are benign but if not just know that we CAN  do this again and put this bastard to bed once and for all.

Like the first time it is better once you know it is contained to the lymph nodes and you have a plan in place.
at this point however I’m still crossing my fingers your biopsy results are good.

I had my first of 12 weekly chemo’s 2 days ago and the nausea is not good but no where near as bad as the dose dense FEC I had last time. This is manageable. The toxal pain will probably start tomorrow but I had that dose dense last time too so hopefully the weekly dose is nicer. 

Keep us all posted, we are here for you and feel free to PM me anytime xxx

@TripleTea . Hey lovely how you managing ?  And can I ask you and @Goodhealthagain  and @sallylovestosing if any of you lovelies had lymph nodes involved with your initial diagnosis of TNBC? I had 8 removed and they were all clear along with my scans. I had 8 rounds of chemo.  4 AC and 4 paclitaxol. No rads as I had the mastectomy (then a prophylactic to the other side)  Just wondering if that’s ok to ask ? I finished chemo 3 years ago in October  My oncol says  less than 5% chance of any recurrence and even less after 3 years due to this but am curious And @sallylovestosing how’s things with you ?  Big hug Margie xx

I hope I haven’t upset or offended anyone with the above post xx. I, just trying to get my head around it and am in awe of those who have been through the shit storm again. I just hope I have half the strength you all have if that’s ever me xxx

Hi @onemargie and @TripleTea - sadly my news isn't great. have now had a PET scan and the cancer has spread to lymphnodes in the chest and neck. This means surgery is out - radiation too - field is too big. So started chemo (Eribulin, 2 weeks on, one week off - don't know much about this drug if anyone has any info/experience I am interested) yesterday, but the Onc wasn't very encouraging about my prognosis. My initial diagnosis was Triple Neg Inflammatory cancer, so I had 5 mths dose dense A/C(8wks) and taxol(12wks) prior to mastectomy. Inflammatory cancer is known to spread through the lymph system, but after mastectomy the three nodes they took were clear. Had 5 weeks radiation "to mop up any stragglers"(how my surgeon put it). And then 4 months Xeloda as an insurance policy - treatment went from Nov 2017 to end Dec 2018. And even with all that, heaps of exercise and a plant based diet, the f%$#&er still came back - it's an aggressive little blighter! Trying to get my head round this diagnosis - it's a lot to take in and you can only think about it a bit at a time. Concentrating mainly on what I can do to stay as healthy as possible for as long as possible so I can do as much nice stuff as possible with the ones I love!

@sallylovestosing. Thanks so much for your response and I’m so sorry to hear you’re going through treatment again. I had a different treatment plan to you so I’m wondering what the difference is between TNBC and inflammatory TNBC as that was never mentioned to me in my diagnosis. Is it the same thing ?  I didn’t have rads like I mentioned nor did I I have the xeloda ?   I wish you the very best with your treatment sounds like you’ve had some positivity from your oncol which is good please keep us posted and you’re right this disease can be a mother fucker that’s for sure. Biggest hugs. Margie xx

Hi there @TripleTea 
Firstly my apologies for the delayed response.
My first diagnosis was mid 2013.  At which time I had a 1.7cm growth removed in my left breast in a lumpectomy along with 7 nodes with one being positive. All were Triple Negative
 I then had 12 rounds of Taxol and AC followed by 30 rounds of radiation.
All was going well and getting on with life, until I had my three year scan, when another growth, same size, same spot reared it's head again.  
This time I was told that I needed a mastectomy.  Nodes were removed but none were positive.  Was told that all was cleared but that I needed to have chemo again !!!!
Having felt that something didn't seem right for this to come back in the same spot decided to get another opinion.
I found the most caring, professional and knowledgeable Specialist that I and my family have ever know.
He wanted to not only know what was happening in that area, but also my entire body.
So he first wanted me to have a PET scan before any recommendations in my treatment moving forward.
I had the PET scan only to be dealt another blow. 
You see, what the other surgeon and radiographer missed was picked up in my PET.  It was discovered that I had another growth, in the same breast but higher up in the tail of the axilla, about the same size !!!!
Shock, Horror and grief was felt all round.  How could they have missed this.   But they did.
I'm forever grateful to my health care Specialist as he has saved my life.
Anyway, again just three weeks after having my mastectomy was back in hospital to have a total axillary clearance.
Treatment was more chemo.  I had 12 rounds of a different regime, Carboplatin and gemcitabine.  Again 12 rounds.  Then more radiation 24 rounds to the upper chest area.
Well, I'm now three year post recurrence and recently had another PET scan and given the all clear.
I'm on a hospital list now to have a reconstruction on the left side.  It's taken me a long time to come to my decision, but feel that I need to get it done to feel whole again. 
I'm going to have my annual mammo and ultrasound done in a coupe of weeks and can feel the tension building, which I suppose will never leave any one of us.
Best of luck with your recovery and stay strong with the knowledge that you have so much support from this wonderful site at any time.
Best wishes, Cheryl  xo

strongtogether said:

onemargie :.......
 I’m wondering what the difference is between TNBC and inflammatory TNBC as that was never mentioned to me in my diagnosis. Is it the same thing?I was wondering the same.

I think inflammatory breast cancer is a different subset of breast cancers - and there is some overlap between the tnbc and inflammatory subsets.
The main symptoms seem to be inflammation, pain, skin dumpling and discolouration, nipple discharge.
Sounds very uncomfortable. Hugs to anyone who has to go through this.

@strongtogether and @onemargie - you are quite right in what you have said about Inflammatory BC. I have TN Inflammatory BC.
  
Inflammatory BC is not always Triple Negative, but often is. Triple Negative BC is not always Inflammatory. 

Inflammatory BC is aggressive, swift to progress and moves through the lymph system. Initial diagnosis can sometimes get confused with mastitis as the breast tends to be red and a bit hard/firm and there is often no discernable lump. Because it is very invasive it also means that at initial diagnosis it is always Stage 3 (this is quite scary) . It also means that the current favoured approach to treatment is Neo-adjuvant chemo (chemo before surgery) to try to contain the cancer, followed by mastectomy (not lumpectomy, because often the skin of the breast is involved) and then radiation.

 I had 5 months Chemo (8 wks dose dense A/C followed by 12 weeks Paclitaxel), then a modified radical mastectomy (3 lymph nodes taken), 5 weeks radiation and then 4.5 months on Xeloda for good measure. That took me to Christmas 2018. Unfortunately after six happy months, in June I had signs of Lymphoedema in my surgery side arm. Although we all assumed this was a result of long-haul flights, my surgeon is a wonderfully thorough (and kind) man, and so he organised all the right tests.
 An Ultrasound, biopsy and PET scan later and I am sad to say, the cancer is living up to it's aggressive stereotype and has returned in remaining lymph nodes under the arm and also spread to nodes in the chest and collarbone area. This means surgery and/or radiation are not  treatment options for me now. Last week I started chemo again, this time on Eribulin, 2 weeks on, 1 week off.
The prognosis is not fabulous, but I am focussing on the good. My underlying health is excellent. I am using a really nutritionally sound plant - based diet to support my health and hopefully discourage the cancer - if you're interested research methionine dependent cancer and dietary restriction.
 A good overview here:https://nutritionfacts.org/video/starving-cancer-with-methionine-restriction/

The IBC Network Foundation has more information about Inflammatory Breast Cancer - https://www.theibcnetwork.org/

It's a foul disease @sallylovestosing and I'm sorry it's set up house in you. Fingers crossed that this round of treatment smacks it right in the pie hole. Mxx