Pathology report

Tom1981 · February 2017

Hey ladies and possibly gents.

My wife had her double mastectomy. Her pre surgery testing showed no activity after chemo however when pathology came back she had a 6cmx4cm (shrunk from 8cm) main mass that was swiss cheesed 40% and 6 out of 16 lymph nodes involved.

On to the problems, they did not get a clear margin on the deep side of the affected area but they state what is left is less than 1mm. Also, on previous tests she had a lymph node near her heart light up. We were never sure if it actually had cancer. The plan from the Cleveland Clinic is to just use radiation to these areas rather than take our her chest muscle or go digging through her chest wall for a potentially uninvolved node. The surgeon says if anything pops up after radiation, they can get it then. Does this sound correct? I can understand the logic behind it but at the same time I just scream get it out.

sbelizabeth · February 2017

Tom, thank you for the love and concern for your wife. I bet you're her rock right now.

It's a visceral feeling to GET IT OUT. Get this beast out of me. But the plan you described sounds sensible. Radiation does a good job of wiping out cancer cells, and it does make sense to zap anything leftover with rads rather than go after an internal mammary node surgically.

But I'm no doctor. Maybe a second opinion from another oncologic surgeon or a radiation oncologist would help.

ElaineTherese · February 2017

Hi!

RE: the node near the heart, I've heard of similar cases where the solution was radiation. Radiation beams are pretty precise these days.

The margins, yes, radiation could clear that up, too. There's more of a choice there -- I guess you could ask for more surgery there if that would make your wife more confident that the cancer's gone.

Either way, best wishes!

MinusTwo · February 2017

Tom - At stage III with the number of nodes involved, I'm surprised they're not talking about chemo before rads. Other than that, I agree the plan sounds sensible to hold off on more surgery for now. I also agree that a second opinion would be extremely valuable in this case. Most docs will support your getting a second opinion. And hopefully they will have done the same at their own tumor boards.

Tom1981 · February 2017

MinusTwo- She had 16 rounds of chemo before surgery. The lymph nodes originally lit up on PET and MRI, after chemo they did not and we were hoping she responded better. That being said, after surgery the pathology still showed cancer in the 6 nodes so we are guessing at the very least the amount in the nodes shrunk. We don't see the oncologist again until Wednesday so it's possible more chemo might happen. I'm not really sure. As far as second opinion we did that at the beginning of this process and ended up going with the Cleveland Clinic. I have confidence in their abilities, I just have such fear for my new wife. I love her beyond belief and to have all this start a month after our wedding is a real gut punch. I just want her to be ok. She's one of the best people I've ever met and she had such a crap early life that she doesn't deserve this. I'm just grasping and want someone to say it will be ok, it just seems like every time we take a step forward, we take two steps back.

SSInUK · February 2017

Hi Tom - I messaged you before. Your wife's diagnosis and history is EXTREMELY similar to mine -size nodes cheno response - and including s finding in an internal mammary node. Can I ask about her reconstruction plan? Autologous reconstruction (ie Diep) involves surgery in which internal mammary nodes CAN be reached and resected. Alternatively radiation is a viable option but you want the very best. Do they have Proton beam at your centre? This can target something the size of a node very precisely. There are centres which have specifically tackled nodes in the chest in this way. If not proton can they in any case target a more intense dose to the area they saw? I have researched these nodes extensively. Treatment is very important but there is encouragement to be found for example in this study, in which radiotherapy to the area for affected women seems to have been very effective: : https://academic.oup.com/annonc/article/19/9/1553/... if you are seeking a second opinion my finding was that the centre with the greatest interest and research into IM nodes is MD Anderson. The kind radiation prof there gave me a second opinion and worked with my hospital to make a plan.

Finally she seems to be eminently eligible to join one of the Ibrance trials. It is a very exciting drug with some amazing results in some stage 4 women and now being trialled in stage 3 - do look into it - could be her magic bullet.

Wishing you all love and luck, I'm so sorry for the awful way this has happened to you both

Tom1981 · February 2017

SSSInUk her reconstruction plan is to go the implant route. She didn't want to do the extra surgery and she figured there would be less tissue for anything to grow in, figures they would be inspected more often and the vanity part of getting a perky set every 15 years. I'm wondering if she should have done the DIEP flap. The doctors said either way would make no difference though. We love our oncologist and he is the head out the department. His plan already involves trials so I'm sure something will come of that. We are just shook right now because we were expecting better results given the clear PET scan. It's still possible that the IM node is not involved so there's that. Thank you for recommending the proton beam. I'll see if that is available. It's the Cleveland Clinic so I would be surprised if they didn't have just about everything.

YATCOMW · February 2017

Tom

I did surgery before chemo.....my tumor was 8 cm and I had at least 17 nodes positive. They did not get clear margins.

After chemo it was suggested for me to go to MD Anderson for my radiation as they are one of the best. I asked that since I had such high positive nodes that they hit the mammary nodes just in case. I got the radiation and the boost and am now out nearly 13 years.

Hang in there. It does get better.

Jacqueline

Tom1981 · February 2017

Jacqueline

Did you do the proton therapy as mentioned above or did you just have standard radiation? I know MD Anderson is the best, it just seems silly to go there when the Cleveland Clinic is 15 minutes from our house and I would assume the quality has to be at least within reach. Don't get me wrong, any increase in odds I think is better but everyone keeps calling our radiation oncologist brilliant. Our problem is his personality and bedside manner but in the grand scheme I don't really care about that.

Tom

MinusTwo · February 2017

Tom - I still believe you would benefit from a second opinion. It doesn't have to be all the way to MD Anderson, but it would be good to see someone at an NCI designated cancer hospital.

lkc · February 2017

hi Tom, the plan sounds solid to me. I also did not have clear surgical margins. As my BC was infiltrating so many areas,I also got a full 5 fields of. Rads incl IM nodes. My rad tx was performed specifically by th head of the rad dept per my Onc.

I opted for implants, as facing a major surgery like a DIEP was way too much for me.

SSInUK · February 2017

Tom - I got my opinion from MD Anderson without having to go there. My hospital sent my records and scans and the head of radiation oncology there looked it all through and discussed with me and them by phone. Your centre may be brilliant - but in any case make sure you have input from someone with IM node interest and experience. My hospital in the UK is exceptional supposedly one of the best in Europe - but there was no one there with a research interest in this area. It's not a small thing. If it lit up on a PET remain vigilant. You can treat the area without Proton using VMAT. The italian study I sent you also details an approach. Sorry this I sent all so complex it sucks

Pathology report

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