Ship's Medical Officer

Hi -

Turns out that one of my boat's crew members is an oncologist! So I have a personal consultant :) I called her today and we talked about the situation. She started by saying that "history of the cancer", meaning previous cases, would be very helpful. When I told her the type, she corrected: "forget about the history, I can count the number of cases on my two hands..."

- She did say that getting 2-3 opinions from the doctors I had spoken to was great
- She did say that the local renowned tumor board was very good so she's glad that they have agreed to review the case
- She did confirm the "jumping" habit of sarcomas
- She did say that most sarcomas are not ERP+ (eostrogen receptive) so would not be affected by changes in hormonal levels. the biopsy should have determined this so if my doctor is offering this option, it means that the tumor is ERP- which would be expected in the case of a sarcoma.
- She did say that 1 year is a long time out and risking to leave cancer cells in the body for that long might not be such a great idea.
- She agreed that removing the lymp node (and sending them for biopsy) is a good idea
- She did say that low grade sarcomas can grow very slowly before they become a problem (1-5 years, consistent with what oncologist #1 said) but since my tumor is > 2 cm, it's hard to tell how old the tumor already is. When I said that the oncologist #2 had recommended radiation, she said that in general
=> low grade <> low grade > 2 cm, surgery + radiation often recommended
=> high grade, surgery + radiation + chemo
=> invasive -> turns into a stage IV cancer.

However, she said that every case will be different so maybe when she sees more data, the doctor will be comfortable taking a calculated risk. She also said that most sarcomas will recur within 1-5 years so the most conservative approach after treatment would be to wait for 1-5 years before starting a pregnancy. After 5 years, relapse is still possible but much rarer and a bi-yearly scan/exam should suffice. And because most sarcoma are not responsive to hormonal changes (unlike breast cancers), patients that have had sarcomas (a non uterine sarcomas) can usually get pregnant later without increasing the risk of relapse.

She also did say that chances of success in the case of a pregnancy probably don't apply to my case. If the uterus is affected by cancer, it may not function properly, so it may not stretch to accommodate a baby. Unfortunately, there will be no way of knowing to what extent its functionality has been impaired without going through a pregnancy. So this 50% number is up in the air apparently.

So she agrees that since the margins are negative, the cervix should be removed - the 50% will depend on how much of the uterus they can leave. She also agrees that there may be no visible tumor, yet aggressive cancer cells developing in the uterus, certainly not what she would leave in for 1 yr.
She also agrees that if the tumor is considered really low grade, meaning closer to the 5 yr mark than to the 1yr mark (eg chances that the cancer cells in the uterus are not yet that aggressive), if the cervix and lymph nodes are removed with no cancer cells in them (or ovaries/or radiation), then it might be possible to calculate the risk associated with waiting 1 year or so before removing the uterus. She said that given the size of the tumor (big), it could be closer to the "getting ready for a high grade boost". The size of the cancer matters a lot since the growth rate is exponential. The more cells there are in a tumor, the faster the cancer will grow, and in the case of a sarcoma, the more likely some cells will have "jumped" places, just because if there a constant x% chance for each cell to jump, this risk increases with the number of cells in the base pool. In my case, a 4cm tumor was removed but looks like all of the cervix is affected since the margins were negative so it's a little bigger than that. Sounds like there could be up to 1 billion cells in there already.

She also confirmed that the more I waited, the higher the chances of needing more radiation, chemo, ovaries removed, etc...later on. although probably really hard to estimate the actual risk.

So sounds like the discussion will focus on determining the actual grade of the tumor (eg likely rate of growth in the coming year). Once they agree on this, then a decision can be made.
Still really low grade, then a calculated risk for a year or so is possible
Unsure or high grade, then probably better to be safe rather than sorry

Have a great week!