Internal mammary lymph node involvement??

[Macie40]

Hi Lu-Lu
Sorry for the delay in catching up but have had a problem with hubby admitted to hospital and intensive care but pleased to say on the mend now.
Yes you are right I am well over 40 so no cyber slaps for you (lol) I expect you have started your chemo by now and IHope it is going well for you.I am not starting mine yet by choice as I am going for Isotape bone scan first just to see if any more progression in bones.my last chemo was weekly Taxol and then epirubicin and I found that very tough so holding of as long as possible but am going to start Ibandronate acid now until I get results of bone scan and a repeat ct scan.
Lu-Lu I also had PE whilst on Taxol and had daily heparin inj for 6 months and now warfarin I hope we meet up again on one of the chemo threads although it looks like mine won't be until february,now.
I wish you good luck on this new journey again ànd thank you for all the help you give love Macie x

[Lulu34]

Hi macie

Firstky id like to apologise for not replying sooner i must have missed the email notification saying you had posted.

With regard to genentic testing would only be considered for testing if you were originally diagnosed with TNBC under the age of 40.... Im just presuming that you may have been older than that at first diagnosis if you have several granddaughters... Feel free to give me a cyber slap if im presuming incorrectly.

My trial drug has stopped working and ill be starting chemo again this month too.... But im going with taxotere again, probably followed with carboplatin as i feel they both worked well for me in the past..... I will keep the capecitabine for when im firther down the line and maybe cant tolerate the harsher treatments so well.....

Im glad you got the problems with your team sorted out and you have an onc you can trust.

Rexi glad your op is over and done with.... Does sound extremely invasive and not surprised you were in a lot if pain but glad its getting better.... But does sound like you went through a real ordeal... Its good you went when you did seeing they were still actually able operate.... Sound slike the 3 of us are having new chemos all about the same time... Im hoping i dont as bad side effect from tax this time around as i did from carbotax 2 years ago.

I was a bit disappointed to say the least that the ganetespib had stopped working as i had hoped it was gonna be my wonder drug... But it did work for a good few weeks so thats still heartening to hear.

Also on my recent scan it showed i had a blood clot in my other lung so i was put on daily heparin jections i was to do for 6 months but had a bleeding reaction within 24 hours of the first injection causing a very severe nose bleed and after id done the second dose i had further nose bleeds lasting for over 2 hours at a time.... Injections were stopped last wed and bleeding stopped last thur.... Im restarting them again tomorrow on a low dose but im not feeling confident that they wont come back.

Good luck to you both and hope trestment is tolerable .

Lulu xxx

[Rexi]

Hi Lulu,
you were right the operation was hefty and i cant deny it, the pain levels were impressive.
i was in the intensive care unit for the first 24h and even with button press morphine, it took about 6-8 hours to adjust all the meds to make me comfortable enough to doze of for maybe 20mins at the time. all a bit surreal. the care, especially on the ICU was outstanding though - i am very happy with the London Bridge Hospital. it took about 3 days to get me off the on-demand morphine and replace it with tablets, which were fine while i was awake, but when i was asleep and didn't take anything regularly, i woke up in absolute agony - till the next tablets could kick in again. once i realised that, i made sure - especially at home - that i would set an alarm for 3am to have continuous meds. slowly lengthening the times. i only came off all opiates around xmas time!
as for an operation on the internal mammary nodes - well, i also didnt realised that my lungs were actually an organ effected during the op - as they collapsed on side for better access, which they only made clear just before the op. think it sounds more horrific than it actually was, but it took a couple of weeks and exercise to expand it properly again. i am writing about it here and i hope anybody having the same ish procedure doesnt panic. i am not sure if i would have worried about it, if i had known days before or if i could have gotten my head around the size of the op better?

although both surgeon mentioned that a bunch of lymphnodes will be taken out, especially more internal mammary ones, they didnt. i am not even sure why not. it bothers me, as the thoracic surgeon definitely said they should go as they are probably compromised. rather they are talking about radiotherapy to that side now. the IM node actually had grown into the rib and they had to remove a small section, so i have now a mesh, which will grow over.

They took an additional node beside the interpectoral one and it was completely clear. Its all a bit odd.
The affected inter-pectoral node - that actually threw some spanners into the works - as that one had decided to grow towards major vessels and nerves. apparently it took ages to strip any visible cancer cells from that area and i was told that it would have been inoperable a couple of months later?!
I did lose a nerve to my arm - which is giving me grief - so i am on longterm gabapentin. worse though - they didnt get the margins they ideally want, because it would have meant removing tissue/vessel that i cannot do without. so - i am counting on chemo - full heartedly. and on my gut instinct in future - i knew something was not right for months, but was fobbed off by platitudes like: you cant feel cancer grow, the residual discomfort is from the radio therapy treatment. Well - i can feel it and it wasnt from the radiotherapy. unfortunately - 'i told you so' is not as satisfying if it still plays with my life!

Anyway, the op is over and i ll do anything i can to get as much gemcarbo drugs inside me as i can. my kidney function test was really good and they apparently gave me an extra big bag full of poisons. its been 4 days and i feel pretty good, tad tired. hopefully the SEs stay kind and i can do stuff i like to do in the next 4 months, as i decided not to go back to work this time during chemo. Been there, done that. Work can wait for a bit.

Regine xxx

[Macie40]

Hi Lulu I thought I would pop back and let you know the result of scan and onc app scan showed some disease progression in chest wall but no progression to other organs and bone mets stable so the exemestane was not helping so stopped.The next step is back to chemo prob in Jan and most likely capecitabine.I raised the point of different oncologists each visit and have now been assigned to a regular one and I must say he was very nice and gave me a very confident feeling.Lulu I have a daughter and several grand daughters should I get tested for their sake although there was not any body before me in the family with b/c.Sorry to keep asking you questions but I find you and lemon grove are very knowledgable and have followed your posts for along time and have learned a lot from you both so I hope you don't mind.I wish you we'll and hope everything is going ok for you and all the other ladies on here. Love Macie x

[Lulu34]

Good luck too macie with your onc appt and CT xxx

[Macie40]

Thank you LuLu for replying to my post I had first WLE in 2007 followed by rads and Arimadex was then ER+5, after almost 5 years dx with a parasternal mass and spread to sternum for which I had chemo but was stopped because of severe s/e and had cyber knife treatment a year ago.I go for my ct scan next week so when I see the onco the following week I will ask for biopsy.
I do hope you get good results with the trials and wish all the ladies on here good luck with their treatments
Love maciexx

[Lulu34]

Hi macie

I would say if your area is still growing its prob withwhile to go and get it rechecked particularly if you havent had surgery or a biopsy to taht area which could cause inflamation or increase in the size of the fat necrosis..... Perhaps there could be something underneath it even a cyst which is making it feel more prominent.

I agree its very unsettling having all those changes in staff.... Is there anybody who has been in post a long time and seems set to stay? As maybe worthwhile asking for a change to the longstanding member for some continuity... You should be able to organise that through your BCN and it isnt a problem and wont affect your care.

As for being on exemestane if its causing you problems its prob not worthwhile taking it as an ER score of 2 means less than 1% of the cells are hormone positive and its typically classed as negative. However if your a gene carrier or at a higher chance of a new primary then it probably wont be doing any harm to take it.


Hi again Rexi

Hope surgery goes well and hopefully eventually will give you some relief although id imagine in the short term its going to be quite painful.

I agree about the range of TNBC.... Mine isnt one of the typical ones.... Most are basal-like (about 80-90%) but mine is negative for the receptors that are common for basal and actually has receptors more like hormone positive BC.... Not actually sure what that means for me but its interesting.

The research for the screening for mets has been discounted on many ocassions in the past.... Although i guess with newer treatments or specific types of BC they may do research again to see if the same holds true.... Basically from symptoms to death is the same regardless of whether it was screen detected or symptom detected but as i have no symptoms at present im hoping the ganetespib delays the onset of symptoms for a good while.

I guess time will tell.

BTW the ganetispib trial (ENCHANT) id only available for people with mets who dont have surgery so its measurable and who havent had radiotherapy to the site they are measuring so it may not be suitable for you at present but if it turns out to be effective it may be available to more TNBC patients in the future.

Good luck ladies

Love Lulu xxxx

[Rexi]

Hi Lulu,

It has been decided to do a thoracotomy and remove all the internal mammary as well as the (sub?)pectoral lymph nodes. And the one that is hanging around under the breast muscle.
The doc says that he and his colleagues ( he works usually together with an onc and an radiologist, now they gotten the thoracist(?) into their little group for me 🙂 ) are of the opinion that the recurrence counts as local recurrence as no further spread shows up.
My op is planned for the 2nd Dec. I can't wait. Whatever the lymphnodes is pressing on gives me pain now and is uncomfortable. Near the sternum, or directly behind on the back ( seem to also come from the IMLN) or near the arm. Something seem to always hurt, since the weekend. Counting down the days. Rather have the positive postop pain, knowing the unwelcome guests are gone.

I am not a Brca carrier, we got that checked out 2 years ago.
I dug into TNBC a bit more, started reading some more and I think I am only now appreciating that TNBC is not a thing. It's what's left over when you discount the combinations of the other known receptors. TNBC itself can also be subdivided into at least 6 defined categories. Each one is different from the other. I am not surprised now that they don't have specific treatments yet.
I will ask about that 'TNBC herceptin' - and anything else I can get my hands on :). It would be fab if it gives better lifeline.

I didn't realise that finding secondaries early doesn't give better chances. That's awful. Y, I can see why you say ignorance is bliss. At least you don't see the sword of Damocles hanging over you, which would make us the same as any other person without the C looming in the shadows.

Macie40,
I know nothing about your question, sorry.

Kind regards
Regine

[Macie40]

Hi I have a 8mm parasternal mass that an ultra sound confirmed was fat necrosis but I am not convinced as it is growing all the time I am currently taking exemastane although Told I amTN.
I have had cyber knife treatment and am due a scan in two weeks if there is any progression they will rethink treatment.Ia am confused as to why the onco thinks that exemastane will work if TN(ER+2).
I am hoping for an opinion from LuLu and wonder whether I should ask for a biopsy if ct scan results do not show anything.unfortunately I have seen 4 different oncologist the last 4 app due to staff leaving the hospital and itis a bit unsettling
Love macie

[Lulu34]

How did you get on on tuesday?

Because im a brca 2 carrier i had annual breast mri scans to look for new primaries and the interpectoral node was picked up on that. although i had felt the area was getting bigger it had been biopsied before and was fat necrosis but the node was actually underneath... I just thought the fat necrosis was growing.

The lung mets were diagnosed the exact same day two years later.... Again on the breast mri.... It showed a new area in the lung that wasnt in previous MRIs.... They did a CT scan which confirmed it was cancer but had to get a biopsy done by bronchoscopy to confirm it was TNBC again.... Kinda wish id never had the MRI now as finding mets early hasnt been found to prolong survival... So even though i have no symptoms im on treatment instead of living in blissful ignorance... But we do know they are there and they are growing so means i can try this new drug called ganetespib which might turn out to be the herceptin equivalent for TNBC.

Xxxx

[Rexi]

Lulu,
I am sure I remember you from 2 years ago. I was fairly active in the June chemo group and for obvious reasons read a lot in the TNBC forums.
So sorry to hear about your lung mets. How did they find them?

Thanks very much for replying. I have not seen much about these internal lymphnodes at all, but not surprising if only 1 in 1000 have to deal with them.
How did they discover your internal one?

I am getting a bit annoyed with myself that I didn't press the matter earlier, but the symptoms only became noticeable since Aug, there is a whole topic in post radiotherapy pains in ribs and breast and none of the yearly checkup had shown up anything at all. Now, of course, I realise that none if these will show up anything.
If I hadn't got the lymphnode on the side, they would never have sent me to the PET CT scan...
It's all very scary. Ooh - I think I am repeating myself.
They will hopefully tell me on Tuesday how they are going to get them out.
Rexi xxx

[Lulu34]

Hi rexi

I havent had involved IMLN involvement but did have a recurrence in my interpectoral lymph nodes two years after my primary TNBC and like IMLN the recurrence rate to IPLNs is about 1 in 1000. It sucks!

Mine were able to be removed and showed signs of previous treatment in that my chemo and rads had a bit of an effect on the nodes...... My axillary lymph nodes were negative at primary and at recurrence.

I think due to the position of IMLNs that surgery is rarely an option but that they can give radiation..... Whether this is cyberknife or normal radiation i dont know as i think they are so rare there isnt a specific best practice and that you just have to go by what your onc and surgeon think are best.

Unfortunately this year i developed lung mets.... 2 years to the day of the IPLN recurrence..... What has reassured me is that during this time that my the cancer has responded to treatment and kept things fairly stable between recurrences...... Which sounds like yours being fairly stable between treatment also.

I can comment on radical surgery behind the sternum but sounds very invasive..... Are they going to remove the other node surgically sounds like it could be an IPLN too.

Probably not much help but just wanted to let you know there are a few folk on here who had equally rare rare recurrences.

Im on a reserch trial called ENCHANT of a drug called ganetespib for my lung mets its had manageable side effects so far... But one of the criteria is that yiu havent had chemo or rads to the affected area but think its only for people with stage 4 TNBC and not stage 3 but might be worthwhile having a chat to your team abiut tis as well.

Lots of luck with whatever they and you decide on treatment wise and hope this will be the last time you have to deal with a recurrence.

Lulu

[Rexi]

Hi,
I was diagnosed May 2011 with TNBC 3cm lump, lymphnode involvement. Had chemo first (4xEC, 4xTax), lumpectomy &node clearance and 35rads.
One year after diagnosis they discovered a lymphnode in an unusual area ( inside my arm muscle), it was removed, no further treatment. I had a PET CT scan and everywhere was clear.
Post op & post rads I had Seroma fluid collections which gave me discomfort and they were removed. After a while though, discomfort was put down to damages due to rads and I should get on with it. The doctors tactile check for lumps didn't find anything of concern.
I have a yearly full checkup with chest xray, ultrasound, mammogram, liverscan and at 2 years (May'13) it came back all clean.
I had a discomfort around the sternum/ rib area behind the affected breast for a while, not pain, but what must be yet another rads induced discomfort, which supposedly could be around for years. 2 weeks ago I insisted on an ultrasound and they found an enlarged lymphnode hiding behind the breast muscle, near the arm pit, not the sternum! A recurrence. However - the PET CT scan revealed that there is a second tumour/enlarged lymphnode behind the ribs- near the sternum! It's in the 'internal mammary lymphnode' and its about 3cm ( not confirmed yet).
I have not heard of anyone having affected lymph nodes in the ribcage?!!
None of the traditional checks would have found it, if the doc hadnt ordered a pet scan due to the cancer node they found on the side - that worries me immensely. Beside the emotional distress of how long has it been sitting in my body - how are they going to get it out???
There is talk about a cyber knife or cutting through rib bones.
Has anyone had either?? What can I expect?
Rexi xx