Hello everyone, I promised to report back after my follow up to receive my lumpectomy results. It looks as though my lumpectomy surgery was successful in removing my cancer, although the tumour was right up against the chest wall and I don’t think they were entirely happy with the surgical margins they achieved on that side - hence the delay in giving me my results.
I am not entirely sure what this means for me in terms of risk for recurrence and I clearly didn’t ask the right questions during my appointment last week. I have now asked for a copy of my pathology report to read for myself what was found and to try to understand surgical margins a little better. If any of you know about surgical margins, particularly against the chest wall, please do let us know?
They have ordered another test, the Oncotype DX genomic test to assess how likely my cancer is to return. If the likelihood percentage is high, I will probably be advised to have chemotherapy as well as radiotherapy and hormone therapy. I am now waiting for an appointment to see the Oncology teams and to discuss treatments. Oh it is such a waiting game from one appointment to the next, but I will have to get used to this.
My tumour when measured initially was 19 mm and at removal measured 25 mm, so it was growing and I am pleased it is out. Grade III invasive ductal carcinoma was unfortunately the final confirmed diagnosis from the lumpectomy results, but the good news is that the cancer appears to be still in its early stage, Stage 2A, with no known distant spread. However, further tests when I see the Oncologist will hopefully be done to be sure, before starting any treatments.
I always have the option to get a second opinion if I am not reassured at any stage in my cancer journey. I may seek a second opinion at our specialist cancer hospital, The Royal Marsden, since unfortunately I have lost some confidence in my current team. It all started so well, but I am beginning to pick up some resistance to answering my questions and that just seeds doubt. It is probably my fault because in all truth, who can really give any reassurance/guarantees about cancer but I have only got one life and I want to continue living and need to feel confident that I am on the right course. Thank you everyone for listening
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I think lumps often come back as bigger, than the scans estimate, after surgery. Difficult to lnow if that is due to less accuracy or any growth in between.
2a means no lymph node as I understand it, but the minimal margines could mean extra radiotherapy boosters to that area. Hopefully the genomic testing will shed light on benefits of chemo or not. I had boosts as went to end of breast tissue above and near skin at the front. No worse than having full breast radiotherapy IME.
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Thank you. I didn’t realise that Stage 2A means no positive lymph nodes. Even though I cannot quite believe it, the one and only tested Sentinel lymph node was apparently negative. I would have been more reassured if 2-3 nodes had been tested as originally planned, although the surgeon I think did say that there was no uptake of blue dye into sentinel nodes 2 and 3 so there was no need to remove for testing.
Yes I hope the genomic test gives positive info. I hope I soon get an appointment to see the Oncologist so that I will know what my options are. I was told to expect radiotherapy + Hormone therapy, but chemo was never mentioned. I am hoping it won’t be needed
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A strange thing happened in my results meeting with my surgeon. I had a list of questions as I’d done my reasearch and being a nurse, I talk to Consultants on a daily basis, so not the least phased. However, when I asked how many sentinel nodes were removed, he laughed, and said there is only ever one sentinel node ( I think part of it was getting one up as I knew too much). What I get from that, is that by definition, the sentinel is the first node that the lymph drains into, from radio-isotope and dye tracking they do intra op. However, if during the op, other nearby nodes look larger or suspicious, they may take them too at the time, hence some have 2 or 3 out, or they could be grouped together so a few get extracted as only tiny maybe. I dont know which it is, and it would be good to hear from a surgeon, because it dawns on me that what happens intra op is a bit of a mystery with lymph node removal decisions at the time.
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Entropy, your comments brought a smile to my face and made a great deal of sense too. It is true, some doctors don’t like us to appear to know too much or might feel threatened by our knowledge, although I would like to believe that most good doctors are supportive and encourage us to take an interest in our health condition.
I am still trying to work out how best to move forward because I have to be confident that the treatments I finally agree to will work for me. But how to decide when there are no guarantees? Sometimes I want to believe that surgery alone will be enough to give me a quality of life for the next five years at least with early stage, Grade III invasive ductal carcinoma. All options might be on the table and it is daunting to know what to agree to, whether to accept “everything” on offer or whether to leave well alone after a successful tumour removal?
As you say, lymph node removal decisions to help prevent any potential spread, often seems to be a decision for the surgeon during surgery. I still don’t quite understand some of their decisions or why they might assume that cancer will always settle in the first node or even go to the nodes first? I believe cancer can spread through many different routes. It would only take a small cancerous cell to break lose and to get into the blood stream and spread to distant places and yet “potential” vascular invasion doesn’t seem to concern our teams quite as much as “potential” lymph node invasion or perhaps I am mistaken?
Also why isn’t an all body scan done routinely at the start of a breast cancer diagnosis to look at all our nodes in the area of the tumour and to look for any distant spread? I feel my team are suggesting treatments “before” knowing the true extent of my disease, or can they tell the extent of my disease from the tumour alone? Sorry so many questions
Hi angelina,
Sorry to find you here. Your message resonated with me as I was also very curious and wanting second opinions. My experience was that most surgeons don’t like being questioned and you have to rely on the nurses with any queries.
It’s not unusual for post op results to be different from the original biopsy results. I had a similar experience and was told my IDC was only 1mm, absolutely tiny and they told me it had probably been sucked out in the biopsy and that any further treatment would probably be over treating me. In actual fact it was 10mm and very much still there!
It’s good news that you have no lymph or vascular spread and nodes were clear - very much a positive. If the sentinel node is clear, which is the first node the breast drains into, then they don’t remove any others because of potential lymphoedema. My surgeon didn’t use the dye which I queried but the node came back clear.
I also wanted further scans after diagnosis but didn’t get one. They just won’t do them without clinical need. What we would like for reassurance and what we get in the NHS are two entirely different things.
I also considered getting second opinions from the Marsden. I didn’t in the end but after discussions with them, they are happy to do this but need all your medical notes.
If you’re still worried you can always go down the private route. Scans aren’t cheap but if you have the means it can give further reassurance. You have to see a private consultant first.
All the best with everything x
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Thank you Frances, I do appreciate your response.
I was under the Marsden for metastatic melanoma in the early nineties and did very well under their care. I certainly won’t be running around looking for guarantees for my current disease since I know there are none, but I would like more answers for some of my symptoms which may or may not be related to my breast cancer. Hopefully when I see the oncologist he will reassure me.
I want to stay with my local current team since the Marsden would mean longer travelling times to appointments, treatments.
I hope you continue to do well Frances. May I ask what treatments you went with for your IDC? I know our disease is unique to us, but it is always interesting to hear others’ experiences.
Hi angelina,
I know what you mean about staying with your current team, I did in the end too and just had to trust them. It’s difficult though to build that trust sometimes isn’t it if you feel they’ve missed things or aren’t explaining things properly, or not hearing you. I feel it’s a thin line in that whilst we do have to trust our multidisciplinary team and take their advice on treatment, we also need to advocate for ourselves and learn about this very complex disease that BC is. So different for everybody. I took their advice 100 % and I’d advise anyone else to do the same, but knowledge is power as they say!
I had microcalcifications on a screening mammogram at 54. Turned out to be IDC and 2 areas of DCIS, one area initially missed. I was due to have a lumpectomy but 2 days before my op I had a call to say they’d found other areas of concern - and they wondered why my trust was eroded at that point! - They’d missed it and I had to go thru all the biopsy process and waiting again, it was tough. In the end I had a mastectomy and no reconstruction. I was thankful it was grade 1 stage 1 no lymph or vascular spread. They sent me off with 2 years tamoxifen and I’m a year into 3 years of Letrozole. I’ve had no other treatment. My PREDICT score benefit for hormone therapy was very low but I take it religiously because they told me to!
Fear of recurrence never completely goes away but in time it gets easier.
All the best x